Asserting Gender Justice Case studies of flagrant sexual and reproducve health rights violaons

Human Rights Law Network 8, Vijay Colony, Near Railway Station, 576, Masjid Road, Jangpura Chittorgarh - 312 001 India New Delhi - 110014 India

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Human Rights Law Network The European Union Human Rights Law Network The European Union PRAYAS' VISION

• Enable poor to have opportunies for their social, economic, physical and cultural growth. • Create alternave knowledge and mechanisms for community development. • Lobby to secure social, economic, polical and cultural rights to all. • Respond to contemporary poverty related community needs • Campaign to gender sensive conduct and equity

Human Right Law Network's Vision

• To protect fundamental human rights, increase access to basic resources for marginalized communies, and eliminate discriminaon. • To create a jusce delivery system that is accessible, accountable transparent, and efficient and affordable, and works for the underprivileged. • To raise the level of pro bono legal experse for the poor to make the work uniformly competent as well as compassionate. • To equip through professional training a new generaon of public interest lawyers and paralegals who are comfortable both in the world of law as well as in social movements, and who learn from the social movements to refine legal concepts and strategies. • To work towards an increased awareness of rights as universal and indivisible, and their realizaon as an immediate goal.

CREDITS Funded by : European Union Design : Cover photo: Book Design: Mahima Creaons Printed by : Mahima Creaons Wrien & Edited by : Tushita Mukherjee and Kshiz Sisodia Published by : Prayas 8, Vijay Colony, Near Railway Staon Chiorgarh, Rajasthan312001, India Ph: +91-1472-243788/250044 E-mail: info@prayaschior.org Website: www.prayschior.org & Human Rights Law Network (HRLN) A division of Socio Legal Informaon Centre 576, Masjid Road, Jangpura, New Delhi, India 110014 Ph: +91-1124379855/56 E-mail: publica[email protected] Website: wwwhrln.org ACKNOWLEDGEMENT The publicaon is based on research conducted by the fact finding team of Prayas and Human Rights Law Network. We would like to thank the whole team of Reproducve Rights Iniave of Human Rights Law Network (HRLN) and extend our gratude to Sr. Adv. Colin Gonsalves, SaritaBarpanda and Sanjai Sharma of HRLN who were supporve throughout. We want to thank HRLN team: Doma Bhua, Shanno Khan, Sunil Mow, Vikash Kumar Pankaj, Saroj Kumar Padhi, Debsmita Bora, Prabha D'Mello, Prisha Bora, Deepa Pandey, Prayas team: Khemraj Chaudhary, Govardhan Yadav, Ajalu Lingi, Duyu Anga, Jawahar Singh Dagur, Udailal Meghwal, Rameshar Sharma, Geeta Mathur, Rekha Nagda, Dinesh Lal, Lalu Ram Game, Sudhindhra Kumawat, Madhav Lal Meghwal. We are extremely grateful for the valuable inputs from Dr. Narendra Gupta who helped us at every level. We would also like to extend our gratude to European Union for its financial support for this publicaon. We would also like to acknowledge with gratude the support of Chhaya Pachauli and Priyanka Sharma of Prayas. Lastly we would like to thank Mr. Balkrishan Gupta of Mahima Creaons for designing and prinng the publicaon. TABLE OF CONTENTS

S.No. Parculars Page No. 1) Introducon 1 2) Failure in providing maternity services: Maternal 3 and infant death case in Madhya Pradesh 3) Violaons of health Rights of refugees in Mewat 12 4) Understanding quality of care in sterilizaon operaons 20 and Family Planning Indemnity Scheme in Delhi 5) Sgma and discriminaon against transgender persons in Odisha 31 6) Maternal death in Odisha 43 7) Primary health services falling apart: A case study 51 of a non-funconal PHC in Arunachal Pradesh 8) A case of maternal and infant death in Bihar 58 9) Sterilizaon failure leading to grave violaons 67 of reproducve rights in Rajasthan 10) Maternal death case in Cachar, Assam 73 11) Denial of treatment to an HIV posive woman in need 84 of hysterectomy in Rajasthan 12) List of acronyms 92 13) List of laws related to women 94 INTRODUCTION

Discussion about sexual and reproducve health issues was always considered a taboo in India for a very long me and for a very long period aer independence while many naonal health programmes were iniated but none relang to sexual and reproducve health was started. There was no clear definion of sexual and reproducve health and no clarity on what entails into it. Maers relang to sexual and reproducve health were part of the mother and child health (MCH) programmewhich was started in 1952. It was only in the late eighes and early ninees when randomized clinical trials were conducted in some areas of India, it came to knowledge that women carry a huge burden of sexual and reproducve tract morbidity aer they aain reproducve age. These are essenally morbidity relang to reproducve tract morbidity which remained undetected and untreated essenally because of strong inhibions and majority of women suffered in silence. Things began to change aer the organisaon of the Internaonal Conference on Populaon and Development in Cairo in 1994 and the World Conference on Women in Beijing in 1995 in which India was an important stakeholder. The Govt. of India modified the MCH programme and renamed it as Reproducve & Child Health (RCH) programme. Many new elements were added in the programme viz. detecon and treatment of RTI and STI clinics in Community Health Centres and higher instuons through syndromic management approach, organizaon of adolescent health clinics and later women counseling and protecon centres to provide support in instances of gender based violence. New legislaons such as the Protecon of Women from Domesc Violence Act 2005, the Child Marriage Restraint Act and the Sexual Harassment of Women at Workplace (Prevenon, Prohibion and Redressal) Act, 2013 were promulgated. India accounts for highest maternal deaths in the world followed by Nigeria according to the UN report on maternal deaths in 2014. In India nearly 50,000 women dies out of 2.85 lakh women due to complicaons arising out of pregnancy or childbearing. The Maternal Mortality Rate of India as per SRS 2012 is 178 and Infant Mortality rate is 42. Total Ferlity Rate of India is 2.3. To reduce the maternal mortality rate and infant mortality rate, India has rafied with various internaonal convenons and formulated various schemes and policies. The World Health Organizaon (WHO) reported that India's MMR, which was 560 in 1990, reduced to 178 in 2010-2012. However, as per the MDG mandate, India needs to reduce its MMR further down to 103. Though India's MMR is reducing at an average of 4.5 per cent annually, it has to bring down the MMR at the annual rate of 5.5% to meet the Millennium Development Goal. Despite India progressing noceably in curbing the maternal mortality rate (MMR) — 65 per cent drop reported since 1990 — the country is lagging behind the UN-mandated Millennium Development Goal (MDG) of bringing a 75 per cent decline in the MMR ll 2015. According to the UN Human Rights Commission, “Women's sexual and reproducve health is related to mulple human rights, including the right to life, the right to be free from cruelty, the right to health, the right to privacy, the right to educaon, and the prohibion of discriminaon”. Despite these obligaons, violaons of women's sexual and reproducve health rights are frequent. These take many forms including denial of access to services that only women require, or poor quality services and performance of procedures related to women's reproducve and sexual health without the woman's consent, including forced sterilizaon, forced virginity examinaons, and forced aboron. Women's sexual and reproducve health rights are also at risk when they are subjected to early marriage.

1hp://indianexpress.com/arcle/india/india-others/india-has-highest-number-of-maternal-deaths/

1 Violaons of women's sexual and reproducve health rights are oen deeply engrained in societal values pertaining to women's sexuality. Patriarchal concepts of women's roles within the family mean that women are oen valued based on their ability to reproduce. Early marriage and pregnancy, or repeated pregnancies spaced too closely together, oen as the result of efforts to produce male offspring because of the preference for sons, have a devastang impact on women's health, somemes with fatal consequences. Women are also oen blamed for inferlity, suffering ostracism and being subjected various human rights violaons as a result. With the launch of Naonal Rural Health Mission in India in 2005, a new energy is infused in public health programme in India with focus on reducon in maternal mortality rate. This led to condional cash transfer scheme to promote instuonal deliveries. The scheme is named Janani Suraksha Yojna (Mothers Protecon Scheme) which was further expanded in scope in 2011 to provide all services relang to mother and child health cashless to all who approach public hospitals. However, there is no corresponding improvement in services other than maternal health services. Therefore, most other important services relang to sexual and reproducve health remain unaended and are the cause of persistently high prevalence sexual and reproducve tract morbidies. The quality of sexual and reproducve health services delivered through public health instuons in India has been a cause of concern all the me and instuon based maternal mortalies are not declining. Similarly, female sterilizaon for permanent contracepon is also an important issue relang to SRHR as women bear unprecedented burden of contracepon mostly in the form of tubectomies. There are strict standard guidelines formulated to conduct tubectomies in India, but in most instances they are being flouted. The project tled “Expanding Access to Reproducve Rights: Using Law to Guarantee Reproducve Health and Rights in India” implemented by Human Rights Law Network and Prayas Chiorgarh seeks to reach out to those families in the states of Rajasthan, M.P., Bihar, Odisha, Chhasgarh, Delhi, Arunachal Pradesh, Manipur, Nagaland and Assam who could not access sexual and reproducve health services for barriers beyond their control and as a result experienced adverse consequences. This book is a collecon of ten case studies of ten different persons from different states of India describing the experiences of different forms of denial of sexual and reproducve health services and consequences thereof. These case studies have been documented by the reproducve health unit of Human Rights Law Network and a team comprising Kshiz Sisodia, Tushita Mukherjee, Chhaya Pachauli and Narendra Gupta of Prayas. Every effort has been made to the accuracy of the events while wring the case studies, however inadvertent mistakes if there are regreed.

Prayas Human Rights Law Network

2 FAILURE IN PROVIDING MATERNITY SERVICES: MATERNAL AND INFANT DEATH CASE IN MADHYA PRADESH Background The infant mortality rate in Madhya Pradesh is the third highest among the states of India. The infant mortality in NFHS-3 (Naonal Family Health Survey-3) is esmated at 70 deaths before the age of one year per 1,000 live births, down from the NFHS-2 (naonal Family Health Survey- 2) esmate of 88. The under-five mortality rate, at 94 deaths per 1,000 live births, is the second highest in the country. These rates imply that, despite declines in mortality, 1 in 14 children sll die within the first year of life. Children from scheduled tribes, scheduled castes, and other backward classes are at greater risk of dying than children not belonging to any of these groups. Scheduled-tribe women are less likely than any other caste/tribe group to receive antenatal care. Almost all women belonging to the highest wealth quinle received antenatal care, compared with only two- thirds of women in the lowest wealth quinle. Almost three out of every four births in Madhya Pradesh take place at home; only one in four births (26%) take place in a health facility. Methodology The fact finding was conducted with the objecve of reviewing all the possible factors that played an important role in Ramkuri's death such as informaon gaps, service gaps, and lacunae in quality of services, negligence and denial of services. The fact finding team conducted: · Site visits to home and health centers · Interviews with family and hospital staff · Observaons of quality of care provided in different facilies. Fact Finding Team Respondents Fact Finding Team Respondents

1. Goverdhan Lal Yadav, SRHR Bhopal 1. Sanjivan singh – Husband

2. Budh Lal Marko, MPW Podki 2. Santoshi devi – AWW

3. Kamlesh Kumar, HARD Anuppur 3. Durda devi – ASHA

4. Shan bai - Mother - in- law

5. Seema devi –ANM Podki

Case of Maternal death and Infant death Ramkuri's background Ramkuri lived with her three children (two boys and a girl) and her husband, Sanjeevan Singh Baiga. The eldest son studies in standard seven and the girl is in standard three. The third child is a boy of three years. They

1 Naonal Family Health Survey- 2005-2006, Ministry of Health and Family Welfare Stascs Division, Government of India

3 reside in a remote village of Dumgarh which is near a forest in Pushprajgarh Block, Anupur District. This village has no direct transport facility. To go to a nearest city, one has to travel almost 8 kilometres to get a bus from Podkai. Nobody in the village possesses a four wheeler; hence everyone is dependent on the buses to travel. Even for buying necessary things like raon, they have to go as far as Amarkantak which is about 22 kilometres from Dumgarh. The nearest Sub health centre is in Podkai which doesn't have any specialized care unit or facilies that government mandates a sub centre to have. The closest Primary Health Centre is in Amarkantak which takes hours for the people of Ramkuri Bai and her husband Sanjeevan Dumgarh to reach. The buses are in bad shape and the roads are not very smooth. For a paent it is highly uncomfortable to travel in such a bus. Ramkuri's family lives in a kutchha house made of mud. They have one room where one half is occupied by two cows and other half is ulized by them for cooking, eang and sleeping. They do not have any funconal Right to Life The constuon under arcle 21 guarantees that toilet; therefore they use forest area for cleaning and everyone everywhere has the right to live with bathing. They use an old rug to sleep and have few dignity'. As an extension of it, Arcle 21 also rugged sheets to cover themselves. They do not have protects the right to safe pregnancy. any assets other than the cows. They use earthen utensils to eat and store water in earthen pots. There is no regular source of water for them. They have a big food container made of mud where they store cereal but that container is usually empty. Hunger is a huge problem that they face almost every day. Ramkuri and Sanjeevan both used to work as labourers and his husband connues to work as one. Both used to set out for work early and come home aer the dark with meagre wage in their hands. They would spend the money in buying food for their children and their minimum requirements of school. Many a mes Ramkuri and Sanjeevan would go to sleep on an empty stomach. In their absence, Sanjeevan's mother used to take care of the children. Ramkuri got married to Sanjeevan when she was 18 years old. Her first pregnancy was at nineteen. Without much complicaon she had a normal delivery. At 21, she delivered again. Aer four years when she was 25, she gave birth to another child. The children were born malnourished but they survived. When she got pregnant for the fourth me, life took a huge turn for Ramkuri and Sanjeevan. She couldn't survive the delivery and nor did the child survive. Ramkuri and her family are unaware of the various schemes of JSSK and JSY that guarantees safe pregnancy. Hospital being at a Sanjeevan and his two children

4 long distance leads to failure of implementaon of such schemes. There is no one to provide care and educaon to pregnant women of villages like Dumgarh, far from any city.

Factors leading to death of Ramkuri Bai

Deaths of Ramkuri Bai and her new born child is a clear illustraon of uer negligence, apathy and insensivity of health care providers from ASHA to the staff at the district hospital Annupur. The medical and health department of Annupur district has completely failed in complying with the norms laid down in JSSK and JSY for safe motherhood. Village health register and records of Anganwadi centre make it explicit that:

- Her pregnancy was registered when she was seven months pregnant and the norm is that confirmaon for pregnancy should be done soon aer a woman in a heterosexual relaonship misses her menstrual period and then on confirmaon she is registered as early as possible and certainly in the first trimester.

As a result of very late registraon of Ramkuri, she could not be examined for the growth of foetus, haemoglobin, blood pressure, urine at intervals which was required and mandated. She could not be counselled for diet, rest, work etc. In the absence of her registraon at Aganwari centre she was deprived of the supplementary nutrion (Take Home Raon THR) which was an important requirement for her. It is also not clear how her last menstrual period (LMP) and expected date of delivery (EDD) were calculated because her first contact with the health workers took place when she was in advanced stage of pregnancy. Since Ramkuri had low haemoglobin and low body mass index (BMI); certainly the foetus she carried was small for gestaonal age (SGA). In such a situaon Ramkuri should have been admied and kept under medical supervision even if the medical staff found that she is sll not due for delivery. While Ramkuri was examined by staff nurse/ANM at the hospital and aer conducng primary examinaon of her abdomen she was asked to go back home in-spite of clear complicaon of swelling and anaemia.

Since her pregnancy was registered when she was about JSSK Guidelines seven months pregnant, opportunity for all the possible “Free transport from home to health measures required to be taken for safe motherhood were instuon” lost. The baby she delivered in full public glare in a corner at the bus stand Annupur is an abominable tesmony of the fact that the public health system downright failed in responding to ensure safe motherhood to Ramkuri and her new borne.

There was extreme delay in her pregnancy registraon which further kept her deprived of all the antenatal services which she should have received during the course of pregnancy. There were no home visits nor could she get adequate Take Home Raon (THR) from Anganwari Centre during her pregnancy and later on.

Failure from the medical team to ensure safe delivery and save life Death of Ramkuri also le behind various queson on present health care system. The amount of negligence shown by the medical staff at various levels is no doubt one of the main reasons for the death of both mother and child in this case. Ramkuri Bai was referred from one place to another despite pain in her abdomen. She

5 had clear signs of high risk pregnancy like the swelling on her body, reports indicang a low HB level sll no medical centre took the right measures to deal with the case. There were no doctors to aend her. Even when the MTC card clearly showed the date of delivery she was asked to get back home. She was provided with no ambulance facility and was bound to take public transport in that acute labor pain. Hospital did not inform the family about any of the rights entled to them under the JSY and JSSK.

Date Parculars (2015)

1st April Ramkuri bai went to PHC Amarkan tak which was about 20 kms from her village because of acute abdominal pain. She went there by a private jeep. She was examined by the staff there and was asked to return home as she sll had days le for her delivery and was given iron sucrose, IV saline and gave some medicines a long with iron tablets as reported by family.

15th April Ramkuri bai and ASHA worker Kusum Dhurve went to PHC Amarkantak aer Ramkuri started having labor pains at about 09:30 AM and ASHA called 108 which reached aer someme. The medical officer at the PHC referred her to CHC Pushprajgarh. She was

not advised during her ANC to go to higher level facility (CHC or district hospital) at the

me of her delivery as she was a high risk pregnancy and could suffer complicaon.

Ramkuri went to CHC located at Pushprajgarh by government ambulance provided by PHC Amarkanthak. The medical officer at the CHC referred her to district hospital with the same ambulance, Anuppur by giving an ambulance cing as a difficult case because of sw. elling all over her body and a very low hemoglobin count.

Ramkuri reached District hospital Anuppur by 1:00 PM. Medical staff of District Hospital Anuppur examined her and told her that she has come to the hospital much before her due date and advised to go home. The fact that she was anemic and ha swelling was completely overlooked. The MCT card issued to her at the me of

registraon menoned that the due date was 15 April, 2015. She was denied any transport to go back home by the hospital. So she went on foot to get a public transport from the bus stand.

Ramkuri deliverd a baby girl at bus stand of Anuppur in full public glare. She was taken

to the District Hospital by govt ambulance Ramkuri was admied at district hospital Anuppur.

New born baby died aer half an hour of delivery.

6 Date Parculars (2015)

15th, 16th & Many newspapers covered the news of Ramkuri bai giving birth at bus stand and also

th 17 April cricized the health facilies and the irresponsible behavior of the medical staff

15th to 29th Ramkuri connued to remain admied in District Hospital, Annupur.

April

29th April District hospital Anuppur discharged Ramkuri bai

Ramkuri bai went back to her village using her own resources.

29th April to Nobody ever contacted Ramkuri Bai aer she was discharged; she got no treatment

13th June aer she got back home. She was suffering from connuous fever.

13th June Ramkuri bai died at her home.

Failure of the state to implement maternal benefits schemes:

Both the central and state governments have introduced many schemes to promote safe motherhood with the objecve of reducing maternal mortality rao including the Naonal Health Mission, Janani Suraksha Yojana, and Janani–Shishu Suraksha Karyakram (JSSK). We observed that neither the medical staff nor ASHA workers are fully aware of such schemes and the various entlements through NHM. Ramkuri bai's family was not entled any compensaon either under the various schemes.

Lack of proper antenatal care:

Ramkuri Bai could not receive adequate ante-natal care which was one of the most important reasons for her death. Hospitals lacked facilies to tackle a high risk pregnancy case like her. She was referred from one place to another without arrangement for proper transport facility. There were no doctors and sufficient medical staff to aend her even in the case of emergency. She was carelessly sent back home on the due date of delivery. Role of ASHA was very weak, she was registered late and hardly got ANC checkups, and she did not even receive any post antenatal care. She had very low level of HB sll she was not given iron tablets on me nor was any proper measure taken to make her gain weight before delivery.

7 Analysis of incident with the context of Guidelines by the Ministry of Health and Rural Management and Internaonal Treaes & Laws

S.No Guidelines, Internaonal Treaes and Laws, Violaons

Constuonal Acts and Rights Treatment Guidelines mandated by Ministry of Health and Family Welfare, Govt. of India

1. Under Janani Shishu Suraksha Karyakram Ramkuri’s husband had to arrange for transport

(JSSK) the following entlements have been and pay while going back home from the Hospital

guaranteed to pregnant women: Blood was unavailable at CHC despite the · Free and zero expense Delivery and knowledge of Ramkuri’s low hemoglobin of 4 gms.

Caesarean Secon

· Free Drugs and Consumables

· Free diet during stay in the health instuon · Free Provision of Blood · Free transport from home to health instuon · Free transport between health facilies in case of referrals · Exempon from all kinds of user charges

2. As outlined in the Guidelines for Antenatal Late registraon of pregnancy. The registraon Care and Skilled Aendance at Birth by t ook place on the seventh month of pregnancy. Auxiliary Nur se Midwives/Lady Health Failure of providing 4 antenatal checkups b y ANM Visitors/Staff Nurses, a Skilled Birth Aendant (SBA) should : No proper checkup of Ramkuri’s condion. She was Track every pregnancy for conducng at least th sen t home from the District Hospital during her 9 4 ante natal check-ups (including the first visit pregnancy despite her low hemoglobin. for registraon), keeping in mind all essenal componen ts listed under Secon B. Ramkuri had swelling due to anemia and it was Secon B overlooked by the hospital staff. · Take the paent’s history. Incidence of anemia was not menoned in the · Conduct a physical examinaon–measure Mamta card. the weight, blood pressure and respirat ory rate and check for pallor and oedema.

8 · Conduct abdominal palpaon for foetal No checkup of the foetus for seven months as

growth, foetal lie and auscultaon of Ramkuri’s pregnancy was registered in the seventh mon th itself. Foetal Heart Sound (FHS) according to the stage of pregnancy.

· Carry out laboratory invesgaons, such as No urine tests conducted. haemoglobin esmaon and urine tests (for sugar and proteins).

3. Minimum services to be provided by a fully Ramkuri didn’t receive any referral card from the funconal First Referral Unit (FRU) CHC when she was referred to a District Hospital.

· 24-hour delivery services including normal

and assisted deliveries Emergency Free transport was not provided.

Obstetric Care including surgical intervenons like Caesarean Secons and other medical intervenons The child was delivered in a bus stand which is a

complete violaon of the right to safe delivery and · New-born Care right to live.

· Emergency Care of sick children · Full range of family planning services including Laproscopic Services

Absence of 24 hour delivery services Safe Aboron Services - . · · Treatment of STI / RTI

· Blood Storage Facility No referral transportaon was provided.

· Essenal Laboratory Services

· Referral (transport) Services

Internaonal Treaes and Laws

1. Arcle 10 of Internaonal Covenant of The right to have special protecon to mothers Economic, Social and Cultural Rights (ICESCR) during a reasonable period before and aer

which has been rafied by India states that childbirth is violated.

“Special protecon should be accorded to Ramkuri delivering in a bus stand without any mothers during a reasonable period before medical help shows the failure of JSSK and JSY and aer childbirth.” schemes and it also does not meet the standards

enlisted under ICESCR

9 2. Arcle 19 of Convenon on the Rights of the The state failed to provide protecon to the new Child born child. Adopt ed and opened for signature, raficaon and accession by General R efusal of Janani Express (Ambulance) at the Assembly resoluon 44/25 of 20 November district hospital in Anuppur

1989, entry into force 2 September 1990, in accordance with arcle 49 This is a negligent behavior on the part of the staff States “Pares shall take all appropriate responsible for providing services to pregnant · legislave, administrave, social and mothers and their newly born children.

educaonal measures to protect the child

from all forms of physical or mental No checkup of Ramkuri aer her discharge from violence, injury or abuse, neglect or the District Hospital. No visit from ANM at negligent treatment, maltreatment or Ramkuri’s house aer the discharge. Ramkuri had exploitaon, including sexual abuse, while fever and very low hemoglobin count on the day of in the care of parent(s), legal guardian(s) the discharge. or any other person who has the care of the child.”

· “Such protecve measures should, as appropriate, include effecve procedures

for the establishment of social programmes to provide necessary support for the child and for those who have the care of the child, as well as for other forms of prevenon and for idenficaon, reporng, referral, invesgaon, treatment and follow-up of instances of child maltreatment described heretofore, and, as appropriate, for judicial involvement.”

Violaons of Arcles of the Constuon of India

1. Arcle 21 of the Constuon of India There has been a violaon of the rights menoned Prot“ econ of Life and Personal Property-No in arcle 21. person shall be deprived of his life or personal The state failed to protect the lives of Ramkuri and liberty except according to procedure her new born child established by law.”

2. Arcle 15(3) of the Constuon of India states No special provisions were made for Ramkuri and that: her new born child to protect their lives

10 Recommendaons Immediate acon: Ramkuri Bai's family should be provided:

· Compensaon of Rs.20,000 under the naonal family benefit scheme as soon as possible

· Compensaon for any expenses related to her medical care should also be entled to the family

· Compensaon for grave fundamental rights violaon Long term acon: 1) Ensure availability of all the required facilies at all the health care centres. 2) Regular supervision of the ASHA and ANM workers. 3) The Ministry of Health and Family Welfare should appoint NGO's to carry out community awareness on maternal health benefits and schemes mandated by the Government of India. 4) Severe penalty/punishment for negligence of duty by ASHA, ANM or any worker in the health care centres. 5) Immediate robust monitoring and evaluaon in of the working of the hospitals that are covered under all the policies and schemes mandated by the Government. Conclusion Ramkuri's case is a classic example of sheer negligence on the part of the hospital and other staff at the health care facility. Her death and that of her infant could have been easily saved if she received care at the right me. Despite knowing about her anemia and body swelling she was sent back home from two government hospitals. The fact that she had to deliver at a bus stop shows that the state failed to ensure safe motherhood to Ramkuri. There was no need for her to visit different hospitals. She could have delivered at the hospital easily. There were not major complicaons. Ramkuri belonged to a very poor family with no savings and no assets. They are tribals, living in the jungles of Madhya Pradesh. Here the closest hospital is about 8 kilometres away. It is next to impossible for the people living in Naubatpur to receive any medical aenon. Due to lack of transportaon facility, the people of the village have to struggle a lot to reach a medical facility. And aer all this when they are denied medical aenon without any reason, there life takes a huge turn. Below Poverty Line (BPL) people spend their whole lives paying off the debt because of the huge amount of loan they take to avail medical facilies which should be free of cost as mandated by JSSY.

11 VIOLATIONS OF HEALTH RIGHTS OF REFUGEES IN MEWAT

Background On 20th September 2015, a fact finding team visited two camps in Mewat, Haryana. The team comprised Prabha D'mello, Social acvist, two interns (HRLN) and Jaffar Ullah, the peoner in this case, Rohingya refugee community leader and intermediary for UNHCR. The team visited Nangli Camp number 1 and 7. Both camps were flooded due to rainfall and lack of drainage system. In Camp 1, the interviewees were mostly quesoned about the general condions and the snakebite in that camp. For the interviews conducted in Camp 7, the focus was laid on reproducve health issues, services available, access to services, schemes and entlements guaranteed under Naonal Health Mission, and Integrated Child Development Schemes (ICDS). The team interviewed pregnant women and lactang mothers to understand their experiences with the health system, the violaons they faced and the quality of care available. Other larger issues like availability of civic amenies and sanitaon issues were also part of the fact-finding. Nangli Camp 7 Descripon of the camp The original camp is covered under water now due to heavy rain, as a result of which the inhabitants had to shi. On a temporary basis, they are allowed to stay in a building sll under construcon, converted in to an emergency shelter. The building consists of two floors and a basement. The windows and doors, parts of the

1The Rohingya people are a Muslim minority group residing in the Rakhine state, formerly known as Arakan. In 2015 an ongoing incident of migraon of thousands of Rohingya people from Myanmar and Bangladesh began, collecvely dubbed as 'boat people' by internaonal media,to Southeast Asian countries

12 Refugee children on the first floor of the construcon site Stairs to the basement filled with dirt water outer walls, parts of the roof, and the interiors are sll missing. As a result, there are holes in both the exterior walls and floors with no barriers. The stairs between the ground floor and first floor do not have a balustrade. The ground floor has access to the basement which is flooded with standing dirt water. Approximately 88 families with 720 people are living in this complex. Children of all ages run about and are under risk of falling off the first floor and stairs. There is no electricity, sanitaon facility or other infrastructure available in the building. A basic cooking facility exists.

Stairs to the basement filled with dirt water

13 Case Studies Rohima Khatum

· Interviewee Name: Rohima Khatum

· Home State: Myanmar

· Address: Nangli Camp 7, Nuh, Mewat, Haryana

· Age: 30

· Age at the me of marriage: 18

· Educaon: None

· Husband's name: Hamid Hussein

· Husband's Occupaon: Weekly Labourer

· Age at the me of first pregnancy: She does not remember

· Number of children: 6 (3 boys, 3 girls) Rohima Khatum with her child

· Number of pregnancies: 6

· Type of delivery: Normal (at home)

· Idenficaon/Documentaon: UNHCR card (menoned as REFUGEE)

· Health facilies: Primary Health Centre, Community Health Centre and hospitals are present in the residing area. There is no ambulance facility available in the vicinity. The interviewee is not aware of Government Schemes like Janani Suraksha Yojana, Janani Shishu Suraksha Karyakaram or the Naonal Maternity Benefit Scheme. Rohima is a lactang mother. She has a one year old baby boy. Her baby received a vaccinaon at the Civil Hospital. She is charged Rupees 10 per visit. Rohima did not have her first Antenatal checkups; she does not receive any subsistence allowance either. Rohima does not have any other idenficaon paper (other than the UNHCR refugee card) and no visa or residence permit from the government. She has access to a water line and somemes gets water from their Indian neighbours. The residents dig holes in the soil outside for sanitaon purposes and cover those with bamboo. She disposes waste generated from home in the barren land. Laila Begum

· Interviewee Name: Laila Begum · Home State: Myanmar

· Address: Nangli Camp 7, Nuh, Mewat, Haryana

· Age: 19

· Age at the me of marriage: 17

14 · Educaon: None (illiterate)

· Husband's name: Md. Hasan

· Husband's Occupaon: Labourer

· Age at the me of first pregnancy: 18

· Number of children: 1 (1 girl)

· Number of pregnancies: 1

· Type of delivery: Normal (at home, Dai present) Laila Begum (with pink scarf) and her child

· Idenficaon/Documentaon: UNHCR card (menoned as REFUGEE)

· Health facilies: Primary Health Centre, Community Health Centre and hospitals are present in the residing area. The next hospital is Nalhad Government Hospital. There is no ambulance facility available in the vicinity. The interviewee is not aware of Government Schemes like Janani Suraksha Yojana, Janani Shishu Suraksha Karyakaram or the Naonal Maternity Benefit Scheme. Laila is a lactang mother and has a 5 months old daughter. She received two Antenatal checkups including examinaon of her weight, height and breasts, folic acid supplementaon and a tetanus toxoid injecon. However, Laila has never been visited by any ASHA worker or accessed an Anganwadi Center. She has not had any contracepve counselling either but received counselling on nutrion. Laila stated that she experienced unfriendly treatment during her checkups. She has had her daughter vaccinated in a government facility; apart from that, she is not aware of any service provided with regard to children below the age of 6 such as primary educaon. At the me of the interview, she did not have any diseases but felt a general weakness. Laila has been living in this camp for 7 months. Before, she stayed in Jogipur and Salahadih. In the camp, dog bite accidents have occurred. Laila has access to water only once in three days. She has to buy it from a local tanker. Like the other residents, she digs holes in the soil for sanitaon purposes. She disposes waste in an emply plot. Sajida Begum

· Interviewee Name: Sajida Begum

· Home State: Myanmar

· Address: Nangli Camp 7, Nuh, Mewat, Haryana

· Age: 20

· Age at the me of marriage: 18

· Educaon: Arabi

· Husband's name: Emdadul Haq

· Husband's Occupaon: Labourer

· Age at the me of first pregnancy: 19 Sajida Begum and her child

15 · Number of children: 1

· Number of pregnancies: 1

· Type of delivery: Normal (at home)

· Idenficaon/Documentaon: UNHCR card (menoned as REFUGEE)

· Health facilies: Primary Health Centre, Community Health Centre and hospitals are present in the residing area. There is no ambulance facility available in the vicinity. The interviewee is not aware of Government Schemes like Janani Suraksha Yojana, Janani Shishu Suraksha Karyakaram or the Naonal Maternity Benefit Scheme. Sajida is a lactang mother. She has a six months old baby boy. Her baby received vaccinaon at the Civil Hospital. She is charged Rupees 10 per visit. Sajida did not have Antenatal checkups, nor does she receive any subsistence allowance. Apart from the UNHCR card, she does not have any other idenficaon paper and no visa or residence permit from the government. Her husband previously lived in Bangladesh for 1 year before he came to Mewat. Sajida has access to a water line and somemes gets water from their Indian neighbours. They dig holes in the soil for sanitaon purposes and cover those with bamboo. She disposes waste generated from home in the barren land. Anwara Begum

· Interviewee Name: Anwara Begum

· Home State: Myanmar

· Address: Nangli Camp 7, Nuh, Mewat, Haryana

· Age: 25

· Age at the me of marriage: She does not remember

· Educaon: None

· Husband's name: Mohd. Hashin

· Husband's Occupaon: Labourer

· Age at the me of first pregnancy: 13

· Number of children: 3 (3 boys)

· Number of pregnancies: 3 Anwana Begum and her child

· Type of delivery: Normal (at home)

· Idenficaon/Documentaon: UNHCR card (menoned as REFUGEE)

· Health facilies: Primary Health Centre, Community Health Centre and hospitals are present in the residing area. There is no ambulance facility available in the vicinity. The interviewee is not aware of Government Schemes like Janani Suraksha Yojana, Janani Shishu Suraksha Karyakaram or the Naonal Maternity Benefit Scheme.

16 Anwara is a lactang mother and has a 6 months old baby boy. She had Antenatal checkups in a civil hospital aer 3 months and 5 months of her pregnancy. Anwana had her last delivery at home. Due to complicaons with the uterus during her delivery, a lady doctor (whose qualificaon was unclear) came to her home and gave her 6 injecons. The 13 days of treatment costed Rupees. 6,000. Anwara has had a uterus prolapse cannot afford a surgery. Moreover, the contracepve shots that she used to receive while in Myanmar are not available here. Her children received vaccinaons from a AWC teacher. Anwara does not have a visa or residence permit from the government. Her two sons (12 years and 6 years old) go to school which provides free educaon . She used to work as labourer and had to go to the police when she did not receive her wage. She has a debt of amount Rs. 3500/- . Anwara has access to water only once in three days. She has to buy it from a local tanker. For sanitaon purposes, they have to use the barren plot. Rukaiya

· Interviewee Name: Rukaiya

· Home State: Myanmar

· Address: Nangli Camp 7, Nuh, Mewat, Haryana

· Age: 35

· Age at the me of marriage: 17

· Educaon: None

· Husband's name: Md. Alam

· Husband's Occupaon: Labourer

· Age at the me of first pregnancy: 26

· Number of children: 5 (3 boys, 2 girls)

· Number of pregnancies: 5 Rukoiya with her child · Type of delivery: Normal (at home)

· Idenficaon/Documentaon: UNHCR card (menoned as REFUGEE)

· Health facilies: Primary Health Centre, Community Health Centre and Hospitals are present in the residing area. There is no ambulance facility available in the vicinity. The interviewee is not aware of Government Schemes like Janani Suraksha Yojana, Janani Shishu Suraksha Karyakaram or the Naonal Maternity Benefit Scheme. Rukaiya is a lactang mother. She has a nine months old baby boy. Her baby received vaccinaon at the Civil Hospital. She was charged Rupees 10 per visit. She did not undergo any first Antenatal checkups. Apart from the UNCHR refugee card, Rukaiya does not have any other idenficaon paper and no visa or residence permit from the government. She does not receive any subsistence allowance either. Her husband previously lived in Salarpur and Jogipur; aer that he came to Mewat. She has access to a water line and somemes gets

17 water from their Indian neighbours. The residents dig holes in the soil for sanitaon purposes and cover those with bamboo. The camp residents dispose waste generated from home in the barren land. Rehana Khalum

· Interviewee Name: Rehana Khalum

· Home State: Myanmar

· Address: Nangli Camp 7, Nuh, Mewat, Haryana

· Age: 18

· Age at the me of marriage: 14

· Educaon: None

· Husband's name: Nur Alam

· Husband's Occupaon: Labourer

· Age at the me of first pregnancy: 14

· Number of children: 2 (1 boy, 1 girl)

· Number of pregnancies: 2 Rehana Khalum with her child · Type of delivery: Normal (at home)

· Idenficaon/Documentaon: UNHCR card (menoned as REFUGEE)

· Health facilies: Primary Health Centre, Community Health Centre and hospitals are present in the residing area. There is no ambulance facility available in the vicinity. The interviewee is not aware of Government Schemes like Janani Suraksha Yojana, Janani Shishu Suraksha Karyakaram or the Naonal Maternity Benefit Scheme. Rehana is a lactang mother. She has a one year old baby boy. Her baby received vaccinaon at the Civil Hospital. She was charged Rupees 150 when she visited it. Rehana had to buy medicine from sources outside the hospital whenever the medicine cost more than Rupees 10. She has received an Antenatal checkup, which costed her Rupees 150. Rehana does not receive any subsistence allowance. Apart from the UNCHR card, she does not have any other idenficaon paper and no visa or residence permit from the government. Her husband previously lived in Shaladih before he came to Mewat. She has access to a water line and somemes gets water from their Indian neighbours. The residents dig holes in the soil for sanitaon purposes and cover those with bamboo. She disposes waste generated from home in the barren land. Recommendaons

· Ensure that the refugees receive land that is free and inhabitable on a long-term basis, i.e. that is protected from natural disasters and expulsion

· Provide safe housing with appropriate sanitaon, sleeping and cooking facilies

18 · Ensure free access to water at any me

· Direct Anganwandi and ASHA workers to the camps to provide services

· Make available free access to appropriate public healthcare

· Enhance awareness-rising on available maternal health schemes

· Admit children to government schools

· Encourage free registraon of births Conclusion The interviews revealed that the refugee communies are in need of both urgent and long-term relief. Especially the water logging problem is a recurring situaon that requires ad hoc as well as prevenon measures. The recent incident of snake bite has shown that the water not only exacerbates life but also poses a threat to the life of the residents. The refugee communies are moreover living in a remote area that is not well connected with governmental support schemes. Fending for themselves, the refugees lack access to basic sanitaon facilies, educaon, and (maternal) healthcare. The pregnant and lactang women are in an especially vulnerable posion. These women are in dire need of special care, for which schemes do exist but are mostly not available for the refugee women. This is either due to the lack of knowledge of such services, the denial of access, or non-existence of facilies. Although the refugees do not face harassment from locals, their inadequate treatment in the healthcare sector gives cause for concern. All fact findings filed in this case were conducted in regular intervals and reveal that the situaon in Mewat, especially for women, has not improved. There are sll severe issues with regard to access to healthcare and informaon on available maternal health Schemes. Moreover, the recent water logging and snakebite incident is a result of insufficient infrastructure such as a decent housing for the refugees. Already in earlier visits, residents have told the team about water logging problems and snakebite accidents. The death of yet another resident is alarming and proves the connuing plight of the Rohingya communies in Mewat District.

19 UNDERSTANDING QUALITY OF CARE IN STERILIZATION OPERATIONS AND FAMILY PLANNING INDEMNITY SCHEME IN DELHI Background India is the second most populated country in the world aer China, with a populaon of approximately 1.3 billion people. The growth rate for 2013 has been 1.7% and the ferlity rate is currently at 2.3 children per woman. While growth rates have been steadily declining since independence, India remains ahead of other comparable Asian or middle-eastern States such as China or Iran in terms of populaon growth.

Map
of
fertility
rates
© Creative Commons

The populaon and populaon growth rates are a maer of concern for policy makers since the early days of independence. In fact, R.A. Gopalaswami's 1951 Census Report stated that the growing populaon of India would represent a problem, because the producon of food grains could not be increased to levels made necessary by the populaon growth. This Malthusian view of populaon growth led successive Governments of India to implement populaon control policies. However, unlike China, the Government of India chose mass sterilizaon as a tool for populaon control. The first populaon control policy was the naonal family planning programme of 1952. The family planning policy and populaon control in India is generally implemented through a vercal approach. This vercal approach culminated in forced sterilizaon in the 1970 under the Government of Indira Gandhi and the forced vasectomies during that period are one of the factors for refusal of sterilizaon of men today. In 1981, the Government of India introduced its first family planning scheme in the form of a centrally sponsored scheme for loss of wages due to the sterilizaon. However, post-surgery complicaons and failures inflicted enormous harm, led to death of the sterilizaon paents and discouraged doctors from performing sterilizaons, because of negligence lawsuits brought against them. Therefore, the Union of India created the Family Planning Insurance Scheme (hereinaer referred to as FPIS) as part of the Naonal Rural Health Mission

20 (NRHM hereinaer) in 2005, which provides compensaon and payments to paents having had complicaons or failures from the sterilizaon. This scheme was renamed to Family Planning Indemnity Scheme in 2013. The sterilizaon policy of the Indian Government has been problemac and vastly cricized. The sterilizaon policy has been cricized for various reasons which can be broken down to problems regarding human rights and the fact that the policy completely ignores other factors which slow populaon growth such as educaon. In fact, human rights abuses in the sterilizaon programs are widespread. Women oen suffer from post- operave complicaons and lose their life, like recently in Chhasgarh. Women are oen coerced into accepng a permanent method of contracepon, either through cash incenves made to them or their husbands. These violaons are rooted in the formulaon of the policy and targets, even though abolished, connue to determine the mindset in the implementaon of the policy. These problems and violaons of fundamental rights have led the Supreme Court of India, in Ramakant Rai versus Union of India (Civil Writ Peon No. 209 of 2003), to direct the Union and States of India to ensure that the guidelines and quality standards for sterilizaon procedures are strictly followed. However, the recent death of 13 women in a sterilizaon camp in Chhasgarh shows that the guidelines and quality standards are not strictly followed. Moreover, reports of women who did not receive their incenves or compensaon under the FPIS are widespread. Therefore, throughout the year 2014, a Fact-Finding team consisng of Prabha D'mello, Social Acvist, and Amanda Taub, journalist, conducted a fact-finding in Delhi on the quality of care in sterilizaon and the implementaon of the FPIS. The meengs were held with Medical Officers and Auxiliary Nurse Midwives, Departments of Family Planning, Gynecology /Obstetrics, women using contracepves or undergoing tests and check- ups for tubectomy ASHAs accompanying them and the husband of one woman who was undergoing tubectomy in hospital. Moreover, this report also contains fact findings undertaken by interns on the same issue. The purpose of the fact finding was to document the experiences with the public system for accessing contracepves, with a special focus on sterilizaon services in Delhi, and to assess the informaon of providers, acceptors and ASHAs on contracepves and the Family Planning Insurance Scheme (hereinaer referred to as FPIS). Methodology In order to understand the funconing and quality of care of sterilizaon services, as well as the FPIS, the fact finding teams visited Gynae/Obstetric departments in Government hospitals to speak to doctors and other hospital staff. During those hospital visits, the team also interviewed Accredited Social Health Acvists (ASHA) and women, who underwent sterilizaon. Lastly, the fact finders undertook a round of interviews with women from communies where a lot of sterilizaons had been performed. The fact finders carried out their observaons and interviews in Deen Dayal Upadhyay Hospital (DDUH), AIIMS (All India Instute of Medical Sciences), Safdarjung Hospital, Vikas Puri Dispensary and Karawal nagar. Female Sterilizaon in Delhi Limited Contracepve Opons The hospital staff does not provide women with birth control pills. Service providers do not consider the birth

21 control pill a viable method. Counseling on pills is considered difficult and health workers do not trust women to correctly take their medicaon. In all the interviews conducted women shared that men refuse to use condoms. Gender Imbalance, Women as Targets of Family Planning Policy ASHAs and government health workers are encouraged to promote female sterilizaon because men are not targeted. The incenve for vasectomy is three mes that of incenve for tubectomy. For tubectomy, the Department of Health and Family Welfare gives Rupees 540 per tubectomy out of which Rs 250 is given to the acceptor as incenve. For vasectomy, Rs 1440 is given to the hospital, out of which Rs 1100/- is given to a man accepng vasectomy. Clearly, women's bodies are the targets of government family planning policies. Women shared that it is difficult for them to talk to their husbands about condom use. They do not consider condoms as an opon. There is a real need to counsel men about condom use and vasectomy. Pressure on women to opt for tubectomy and medical terminaon The pressure the health system puts on women amounts to coercion to have an aboron in the case of sterilizaon failure, even if a woman wishes to connue with the pregnancy, and to undergo tubectomy aer aboron if she has 'completed' her family as per health service providers' understanding/standard. Tubectomy is forced as a pre-condion to pregnant women trying to get an aboron, leaving them with no alternave. Aboron at a private facility is very expensive and makes them vulnerable to have free aboron at public health facility at the cost of having tubectomy against their wishes. During our interview one woman approached the doctor for aboron and the doctor told her to accept tubectomy aer the aboron. No other temporary contracepve method was offered /explained to her. Consent before surgery The “Informed Consent Form for Sterilizaon Operaon/Re-sterilizaon-annexed with guidelines documents” states:

“(h) If I/my wife get (s) pregnant aer the failure of the sterilizaon operaon and if I am not able to get the fetus aborted within two weeks, then I will not be entled to claim any compensaon over and above the compensaon offered under the Family Planning Insurance Scheme from any court of law in this regard or any other compensaon for the upbringing of the child.”

This point in consent form is misunderstood by the health service providers in the government hospital leading to coercion i.e. aboron as pre-requisite for compensaon. The Guidelines also state that each case of sterilizaon failure should be reported to the District Quality Assurance Commiee. The District Quality Assurance Commiee will conduct a preliminary invesgaon and report to the State Quality Assurance Commiee. Incomplete informaon is leading to coercion, as there is a linking of compensaon with aboron followed by tubectomy. Asha's Case Asha is a mother of two children, who underwent sterilizaon on 7th of March, 2015. She shared that cost of living is raising high in Delhi and it's difficult to provide good standard of living and quality educaon to children. She already has two sons and does not want any more children. The ASHA worker provided

22 informaon about Tubectomy and its benefits to her. However, the ASHA did not provide counseling as per GOI guidelines as she only provided informaon about the benefits, not about the limitaons / risks involved in the procedure. The only limitaon shared was that it is an irreversible procedure. Not a single client and even the ASHAs were aware of what will happen before, during, and aer the surgery, its side effects, and potenal complicaons. This is in clear violaon of the Union of India Guidelines which provides that:“Counseling is the process of helping clients makes informed and voluntary decisions about ferlity. General counseling should be done whenever a client has a doubt or is unable to take a decision regarding the type of contracepve method to be used. However, in all cases, method-specific counseling must be done.” (Secon 1.4.1 of the Standards for Sterilizaon).

“Counseling is the process of helping clients makes informed and voluntary decisions about ferlity. General counseling should be done whenever a client has a doubt or is unable to take a decision regarding the type of contracepve method to be used. However, in all cases, method-specific counseling must be done.” (Secon 1.4.1 of the Standards for Sterilizaon).

Asha had a Cu'T' (Copper T) inserted aer the birth of her first child and got it removed when the family decided to have one more baby. She had a Cu'T' inserted again aer giving birth to her second child. She paid Rupees 1000 to a private facility for this procedure. When asked why she did not get the service from a government facility, she explained that she had no trust in the quality of Cu'T' that the government hospitals provide. She shared that Cu'T' is sll inside her and now it's me to remove it and opt for another method. She had a very good experience and did not face any side effects or problems. When asked about her opinion on choosing a 10 years expiry Cu'T', as she had no problem ll date using Cu'T' twice for a long period, or other spacing methods, she explained that the ASHA told her about a 'nice' facility available for tubectomy, so she decided to go ahead with it. She knows that it is an irreversible permanent method. Asha said “I am very anxious and tense about the surgery, how it will happen and what will happen?” she was tensed because the hospital staff failed to inform Asha about the risks and benefits involved in tubectomy. Family Planning Indemnity Scheme: Asha was completely unaware of the provisions of the scheme. No one told her about the compensaon that she is entled to in case of failure, complicaons or death due to tubectomy. The ASHA worker was also not aware of the scheme. Nagina's case Nagina missed her period and came to the hospital for a check-up. She underwent a urine test which confirmed her pregnancy. She did not want a second child so early. Because she is sll breaseeding her previous child. She wanted to get an aboron done. She did not talk about any contracepve method that could be used to prevent pregnancy. She shared that her previous child was born at home and that she was not aware of contracepve methods. She didn't know who the ASHA worker is in her area and has never met one. She went to the government dispensary and they further referred her to Deen Dayal Upadhyay Hospital (DDUH). She explained that her neighbor told her about Cu'T' and that she will get it for herself aer undergoing the aboron. This is a typical case of unmet need, where no service provider or outreach worker approached her for informaon and services, despite guarantees under the NRHM. As per circular from Ministry of health and family welfare, dated 4th August, 2011 the Govt. of India, in order to improve access to contracepves by

23 eligible couples, decided to ulize the services of ASHAs to deliver contracepves at the doorstep of households and to incenvize ASHAs for their efforts. Free supplies of contracepves at Primary Healthcare Centers (PHC) and sub-centers were withdrawn. However free supply at Community Healthcare Centers and sub divisional and district level hospitals shall connue as before. Mehrunnisa's Case Mehrunnisa has five children. The cost of living is very high in Delhi and it is difficult to provide a good standard of living and quality educaon to children. She already has five sons and does not want any more children. She received informaon about Tubectomy from her neighbor. She had no informaon about any other spacing method. Mehrunnisa's family migrated to Sagarpur 7-8 months ago and she has never seen an ASHA worker in her area. She had no informaon about ASHAs. She never used any contracepve in her life. Mehrunnisa was two months pregnant and came to DDUH (Deen Dayal Upadhyay Hospital) for an aboron. However, the hospital refuses to offer aborons to women with “complete” families who do not consent to a tubectomy. Aboron becomes condional in such cases and women, especially the pregnant ones, are le with no other choice but to have a tubectomy if they want an aboron. DDUH refuses to offer non-permanent forms of contracepon to these women. Geng an aboron in a private facility is expensive and these women with limited earnings cannot afford it easily. Mehrunnisa never used any contracepve in her life. She was not aware of any of the temporary methods such as pills, copper T, injecbles, etc. Mehrunnisa said that the health service providers only talked about tubectomy. No counseling on the tubectomy procedure was done; no limitaons or side effects were communicated. She was not even aware of the incenve money (Rupees 250) for accepng the method. Her neighbor told her about Cu'T' aer she got appointment for the surgery and she did not have courage to refuse her scheduled tubectomy at that point of me. This shows the pressure the health system puts on paents, specially the women.

Secon 1.4.1.7. provides that “Clients must be told that they have the opon of deciding against the procedure at any me without being denied their rights to other reproducve health services”

However, in this case client was not given this informaon and opon. Aer her surgery, she was in a lot of pain. She informed the fact finding team that if someone had told her about the 10 year Cu'T' earlier, she would not have undergone tubectomy. She was filled with guilt for religious reasons. Religious and social issues that impact a woman's access to contracepon are never addressed. India is signatory to the Convenon on Eliminaon of all forms of Discriminaon against Women, which obligates Governments to take social/cultural issues into account when addressing discriminaon against women. It is the obligaon of the Government to take measures to address religious and cultural issues / beliefs which are prevenng women from seeking health services and / or forces them to live with guilt for adopng health seeking behavior like accepng Cu'T' or tubectomy. Family Planning Indemnity Scheme: When asked about FPIS, Mehrunnisa was completely unaware of the provisions of the scheme. No one had told her about the compensaon she is entled to in case of failure, complicaons or death due to tubectomy.

24 Accredited Social Health Acvists The fact finding team interviewed three ASHAs, who accompanied women to the hospital, and they shared the following points: Remuneraon and tasks

· The discussions with ASHAs revealed that they have to complete a six point task list and submit to the ANM at the nearest health facility for monthly payment.

· There were some differences in the reported tasks for monthly payment as they were not able to recall all of them or may be different ASHAs had a different understanding.

· Hidden Targets for ASHAs:

· There is no clear targets conveyed to ASHAs verbally but in case ASHA is not able to complete / fulfill all the above menoned points then she will get only Rs 500/- per month. ASHA Compensaon

· ASHA workers feel that their remuneraon should be according to work. Right now ASHAs think that it is very low in comparison to their role and responsibilies. FPIS (Family Planning Indemnity Scheme) ASHAs were also not aware of the scheme. They told that they know that in a failure situaon the hospital will provide free aboron and treatment. They also emphasized that surgeries are always successful and failure, complicaons and death never occur. The ASHAs did not have informaon about the compensaon provided during each situaon. Inadequate Training for ASHAs ASHAs require comprehensive follow up training on contracepon and counseling. Their knowledge about contracepve methods did not correspond to Union of India Sterilizaon Guideline requirements. They had incomplete informaon about Cu'T'. Newer IUDs like the Cu T-380 provide a longer period of protecon and has a failure rate of 0.8% in the first year of its inseron. It is also one of the safest contracepve devices, but ASHs are not talking about its benefits and most importantly automac expulsion (28.8%) a significant cause of disconnuaon is not being shared. Inadequate counseling for sterilizaon Although health services providers behaved cordially with paents, contracepve counseling requires specialized training. The ASHA workers and health service providers do not play an acve role in raising awareness about all contracepve methods available and about alternaves to tubectomy. The Union of India Guidelines on Sterilizaon specifically state that counseling should entail the process of helping clients make informed and voluntary decisions about ferlity (Secon 1.4.1. Counseling ). The Guidelines mandate that women should be counseled mulple mes by mulple services providers including:

25 1.4.1.1. Clients must be informed of all the available methods of family planning and should be made aware that for all praccal purposes this operaon is a permanent one.1.4.1.2. Clients must make an informed decision for sterilizaon voluntarily. 1.4.1.3. Clients must be counseled whenever required in the language that they understand. 1.4.1.4. Clients should be made to understand what will happen before, during, and aer the surgery, its side effects, and potenal complicaons. 1.4.1.5. The following features of the sterilizaon procedure must be explained to the client: a. It is a permanent procedure for prevenng reversal involves major surgery and that its success cannot be guaranteed. b. future pregnancies. It is a surgical procedure that has a possibility of complicaons, including failure, requiring further management. c. It does not affect sexual pleasure, ability, or performance. It will not affect the client's strength or her ability to perform normal day-to-day funcons. Sterilizaon does not protect against RTIs, STIs, or HIV/AIDS. 1.4.1.6. Clients must be encouraged to ask quesons to clarify their doubts, if any. 1.4.1.7. Clients must be told that they have the opon of deciding against the procedure at any me without being denied their rights to other reproducve health services.

Distress of ASHAs: All the ASHAs interviewed had common complaints from the system. They told that they face problems in geng their commission. In cases of immunizaon to the infants and children, like measles, they do not receive their pay unless they have ensured all three doses have been administered to the child. Oen the clients get 2 doses of the injecon and leave the city and go to their village or get the third dose for their child from somewhere else. In such cases the ASHAs do not receive any commission for even the two doses that they were responsible for. They shared that they work hard with their pregnant clients for months and somemes the client decides to have a delivery in a private hospital rather than a government hospital. Thus, the ASHA workers lose their remuneraon as they do not receive any incenve for paents opng for medical and health services of private hospitals. Thus, the month's long toil of the ASHAs goes waste and proves to be fule. All their me, money and effort bear no fruit for them. They also complained of extremely low wages in comparison of the work they are required to do. Oen the ASHAs are called at odd hours in the night or early morning when their client needs them. In comparison to the Anganwadi workers whose job mainly is of distribung food and filling up of some forms, for which they are paid Rs.5500 per month, the work of an ASHA is much more rigorous and involves much of field work and running around for which they are paid grossly inadequate wages of Rs.1000 per month on the condion that they meet the 6 points that have been assigned to them, else their pay is slashed down to Rs.500 per month. The ASHAs said that they receive their commission due for a delivery only when the client provides her with the discharge slip given by the hospital. Oen the paents do not provide the papers/ documents or receipts to the ASHA which is also a cause of loss of commission for the ASHAs.

26 Some health workers reported that the district and sub-district authories assigned individual yearly targets for contracepves, with a heavy focus on female sterilizaon. Almost all said that their supervisors or other higher-ups threatened them with adverse consequences if they did not achieve their targets. These included threats to withhold or reduce salary, negave performance assessment, or suspension and dismissals. In one case, a health worker reported that she was asked to falsify records to show she had met targets or else she would be reported for poor performance. Sunita's Case Sunita, a 30 year old mother of two children had come along with an ASHA in AIIMS (All India Instute of Medical Sciences) on 26th of June 2014 for tubectomy surgery. She did not want any more children. The reason why she got tubectomy operaon is that she was told that Copper-T is not a very effecve method of contracepon and causes many complicaons. She was told that tubectomy was the most viable opon. She got to know about tubectomy through her sister who had also undergone tubectomy before. When she got her operaon done the 26th of June, she experienced some complicaons. She had some internal bleeding and was experiencing a lot of pain. She came again to the hospital on 29th June to see the doctor as she was experiencing problems aer the first surgery. An Ultrasound was conducted aer which she underwent a second Tubectomy operaon on the same day. A laparoscopy was done aer which she did not experience any problems any further. Moreover, she was not aware of any other alternate methods of contracepon except Copper-T. That means that the ASHA with her did not inform her about other opons. She also did not know about the complicaons related to tubectomy. She only knew that she wouldn't be able to give birth again. She informed as that when she repeatedly asked the doctor regarding problems that she might face aer the operaon, the doctor only gave her assurance that no complicaons would arise. Even ASHA told her that no complicaons would occur and that it's a maer of only few hours and she would be discharged the same day. Even ASHA told her that no complicaons would occur. She was given a consent form but she was unaware of the contents of the consent form. The consent form required signature of the acceptor a well as her husband. She got her compensaon of Rs. 250 as per the scheme aer the second operaon that happened on 29th June. Experience of other contracepves: Sunita had used Copper-T before and she had got it inserted at a private hospital/clinic. She had used it for a period of five-six months. Later, her sister suggested that tubectomy was a beer and permanent opon. Since, her sister had also undergone tubectomy before; she was convinced and wanted to get the surgery too. However, she told us that had she been informed about the possible problems that she might have to face, she would have never got Tubectomy done as aer the operaon she had to face complicaons. No counseling was provided to her before and aer the surgery. She did not have any knowledge of the Family Planning Indemnity Scheme or any compensaon that she should receive in case of failure, complicaon or death. Violaons The Right to Life requires governments to safeguard individuals from arbitrary and preventable loss of life. Most maternal deaths are preventable, and therefore a systemac failure by governments to provide the services needed by women to survive childbirth constutes a violaon of the right to life. All preventable maternal deaths are a violaon of the right to life of a woman.

27 The Right to Health includes the right to control one's health and body, including sexual and reproducve freedom, and “entlements include the right to a system of health protecon which provides equality of opportunity for people to enjoy the highest aainable level of health. An essenal component of the right to health is the availability, accessibility, and quality of health facilies, goods and services. Women's right to health is therefore violated when governments do not provide them with reproducve health care services that meet these standards”.1

The right to equality and non-discriminaon, regardless of gender, race, or other status, is protected under internaonal and regional human rights law. Because only women require health care services for pregnancy and childbirth, systemac government failure to provide such services reflects the devaluaon of women in society and constutes discriminaon on the basis of gender.

The Right to Reproducve Self-Determinaon (the right to determine the number of spacing of children, and the rights to liberty, personal integrity and privacy): The right to determine the number and spacing of children is based on recognion of the overall impact of childbearing and rearing on women's physical and mental health, as well as women's access to educaon, employment, and other acvies related to their personal development. Government failure to provide reproducve health services in connecon with pregnancy and childbirth violates women's rights to reproducve self-determinaon because it denies them the freedom and ability to safely control their family life, in parcular the number and spacing of children. Moreover, women without the means to control their ferlity are more likely to experience unwanted pregnancies and have mulple births at shorter intervals, making them more vulnerable to the risks of maternal mortality and morbidity.

The Right to Informaon is a necessary part of women's ability to make choices with respect to their sexual and reproducve lives and to access health services needed to ensure healthy pregnancy and delivery. The states must provide access to the informaon, educaon, and means to enable women to decide freely and responsibly on the number and spacing of their children. The Child Rights Commiee has emphasized that states “should provide adolescents with access to sexual and reproducve informaon, including on family planning and contracepves, the dangers of early pregnancy, the prevenon of HIV/AIDS and the prevenon and treatment of sexually transmied diseases (STDs).”2

The Right to an Effecve Remedy is the obligaon of states to protect women's right to health care which includes pung in place a system that ensures effecve judicial acon. The rights of vicms of violaons of the right to health to access judicial or other remedies and adequate reparaon in the form of restuon, compensaon, sasfacon or guarantees of non-repeon also need to be recognized. States must ensure “accessible and effecve remedies” for human rights violaons and to take into account “the special vulnerability of certain categories of person”. 3

1Commiee for Economic, Social and Cultural Rights“General Comment on the right to the highest aainable standard of health, E/C.12/2000/4 2Commiee on the rights of the child, General Comment No.4, U.N. Doc. CRC/GC/2003/4 (2003) 3Human Rights Commiee, General Comment No. 31 “The nature of the General Legal Obligaon Imposed on States Pares by the Covenant”, CCPR/C/21/Rev.1/Add. 13, p. 6

28 Ground realies of sterilizaon The recent incident in Chhasgarh, where 15 women were killed in a sterilizaon camp, has once again brought India's Family Planning policies under the scanner. It is a painful reminder of not just the inadequacies of our public health system but, more importantly, a reminder of the wrong focus of health programmes in India, which should focus on women's reproducve health and rights, not just on sterilisaon. Thus there is a need to assess the condions and issues before the tubectomy acceptors in the country. HRLN Delhi has been working on this issue much before the Chhasgarh incident. A PIL was filed eight months back on the same issue. A field visit was arranged by reproducve rights team of HRLN on the 15th of November in Karawal Nagar, Delhi to get acquainted with the ground realies of sterilizaon. A list of all the tubectomy acceptors was sought under the RTI Act. The list included those whose tubectomy operaons had failed. The aim was to find out whether these women had received proper treatment, care and compensaons for the failed operaons. The HRLN team found out the following discrepancies: 1. The Government list of names and addresses of people was mostly wrong. 2. Lanes and by lanes were wrongly numbered. Addresses in the list did not match the ones present there. 3. The names in the list were mostly nicknames, so it became difficult to find the exact person. 4. Most people had taken houses on rent. There were many cases where the people from the list had either le or shied to some other place. Meeng with ASHAs Some of the key points shared by the ASHAs with the HRLN team were:

· None of the ASHAs were aware of schemes and benefits of health provided by the government, the ASHAs were not aware of government benefits provided if there were complicaons or death during tubectomy;

· The acceptance for Copper T amongst women is very low, as there is a belief that the copper T inserted gets displaced and heavy bleeding occurs;

· No male is interested in vasectomy and they push their wives in the slum to opt for tubectomy;

· Within a year one ASHA has helped around 8-10 women to be acceptors of tubectomy. They have been asked to mobilize women for sterilizaon, however in large slums like Karawal Nagar; the women voluntarily reach out for sterilizaon.

· The slum dwellers do not trust condoms, and hence the ASHAs are reluctant to distribute condoms, the condoms are distributed for free. But the ASHA workers being women are hesitant to talk about condoms .As also there is hesitaon on the part of men while taking condoms from ASHA workers.

· Over the counter availability of Medical Aboron Pills like Misoprestol / Mifepristone has made it easy for women as it facilitates in aboron, however somemes these women do seek the help of the ASHAs when they have heavy bleeding. The ASHAs do not know what to do with these cases, as the women are reluctant to visit the Doctor or ANM.

29 · There is no counseling session in order to guide these women about the procedure or opons for other contracepve methods.

· Post tubectomy there is no guidance about post surgery/operave care.

· Proper norms and guidelines are not followed in regard to filling up of forms, to counseling and cerficaon. Conclusion Shocking facts of poor health care system related to sterilizaon have emerged post field visit of HRLN team. Interviews with ASHA workers and women acceptors of tubectomy are yet another revelaon of series of instances of violaons of medical guidelines and brutal repression of reproducve rights and health of women in India. India's Family Planning programme has been targeng only women, which in fact is a far more complicated procedure with side effects and post-surgery hormonal disturbances and health implicaons. Furthermore, targeng with monetary incenves to women is problemac as it also suggests coercion especially when the women are from poor and marginalized communies. During interviews, women have revealed that they were not given any/complete informaon about permanent nature of sterilizaon or problems like weakness, excessive bleeding or irregular menstrual cycle. Both the women interviewed have not received benefits under the Janani Shishu Suraksha Karyakram Scheme (JSSK). One of the acceptor did not even know what tubectomy was. In most of the cases it was observed that women had to over spend or get further treatment at private hospitals. The acceptors were not even informed that in case of failure, compensaon/remedies were available under Family Planning Indemnity Scheme. Public Health Workers force women to have Medical Terminaon in the case of Failed Sterilizaon or Tubectomy in the Case of Medical Terminaon. It is a maer of concern that none of the ASHAs interviewed were aware of schemes and benefits of health provided by the government. They failed at providing counseling session for sterilizaon in order to guide women about the procedure or opons for other contracepve methods or guidance about post- surgery/operave care. The government must ensure that medical, procedural and ethical guidelines are strictly followed in every government run hospital and health camps. There should be proper training programmes for ASHA workers. Proper norms and guidelines should be followed in regards to filling up of forms, to counseling and cerficaon. Women should be well informed. It should be considered to shi the focus to expansion and availability of non-surgical contracepon to women and enhancing their contracepve choices, along with programmes to women's empowerment and counseling around medical needs and reproducve choices.

30 STIGMA AND DISCRIMINATION AGAINST TRANSGENDER PERSONS IN ODISHA Background The State of Odisha is located on east coast of India by the Bay of Bengal. It is divided into 30 districts. According to the 2011 Census, the State has a populaon of 43,228,228 people spread over 155,707 square kilometres1 and over 80.9% of Odias live in rural areas, which is significantly higher than the naonal average of 68.8%.2 As noted, it is esmated that up to 25,000 people living in Odisha idenfy as transgender. In parcular, based on informaon obtained during the fact-finding mission, it is esmated that there are around 25 transgender persons living in Cuack and around 486 living in Bhubaneswar. It is important to note, however, that accurate figures are unavailable due to the fact that no formal esmaon of the number of transgender persons living in Odisha has been conducted. Between 20 July and 22 July 2015, a team of social acvists from the Human Rights Law Network (HRLN) conducted a fact-finding mission in Cuack (Cuack district) and Bhubaneswar (Khurdha district), Odisha in order to establish the current situaon of the transgender communies living in these areas. Odisha has a very visible transgender community. It is esmated that there are up to 25,000 transgender persons living in Odisha, although in absence of a formal esmaon, this number is only an approximaon.3 HRLN has maintained a dialogue with members of the transgender community in Odisha for several years and is aware of the high level of discriminaon and ostracism they face. In parcular, Sarita Barpanda has maintained contact with transgender community members in Odisha since 2005. Transgender community members from Bhubaneswar visited HRLN (Delhi) in March 2015. They expressed their desire to file a peon due to failure of Odisha state government in implemenng the Supreme Court's judgment in Naonal Legal Services Authority (NALSA) vs. Union of India and Others.4 They also requested Informaon on Educaon Communicaon resource materials. In its judgement in NALSA on 15 April 2014, the Supreme Court gave legal recognion to persons idenfying as transgender – or third gender. It held that transgender persons are afforded the same Constuonal protecons as any other Indian cizen. Furthermore, it made a number of direcons to the Central and State governments, instrucng them to ensure that necessary services and reservaons are made for transgender persons. The purpose of the fact- finding mission therefore, was to determine whether the judgment has been properly implemented in Odisha or not

1HMIS Analysis – Odisha Across Districts, Apr ’14 to Sep ’14, Naonal Rural Health Mission (14 Nov. 2014). Analyzing data from the 2011 Census. 2Census of India 2011, Orissa Profile, available at hp://censusindia.gov.in/2011census/censusinfo dashboard/stock/ profiles/ en/IND021_Orissa.pdf; Census of India 2011, India Profile, available at hp://censusindia.gov.in/2011census/ censusinfodashboard/stock/profiles/en/IND_India.pdf.

3See for example, a census conducted in India in 2011, it was esmated that there were around 20,000 transgender persons living in Odisha. However, acvists and members of the transgender community claimed that the number of transgender persons was actually much higher, as many transgender persons would not have revealed their gender idenes in the census. hp://mesofindia.indiames.com/india/First-count-of-third-gender-in-census-4-9-lakh/arcleshow/35741613.cms

31 The fact-finding team consisted of Seva Soren, an advocate at the HRLN office based in Cuack, Odisha, and three social acvists from HRLN New Delhi. Sarita Barpanda is the current Director of the Reproducve Rights Iniave and has a longstanding history of working with transgender communies in India. Smri Minocha is the Director of the Women's Jusce Iniave. Sarah Crowe is an intern at the New Delhi office. The interviews of the transgender communies were conducted by Seva Soren and Sarah Crowe. They visited two different groups, one in Cuack, and one in Bhubaneswar. All four team members were present during a meeng between the Odisha Department of Social Jusce and Empowerment and transgender representaves from different districts of Odisha. The team successfully met with different members of the transgender community and gained an insight into the situaon of transgender persons living in Odisha. Ulmately, the team learned that the government of Odisha has made minimal effort to implement the NALSA judgment. Defining Transgender Transgender is a person whose self-idenfied gender does not correspond to the gender assigned to them at birth. Their gender identy may not conform to convenonal binary noons of male and female, but rather as a third gender. The term transgender is not indicave of sexual orientaon, hormonal makeup, physical anatomy, or how one is perceived in daily life.5 The term 'transgender' should be disnguished from terms such as 'transsexual' and 'intersex.'7 It should also be disnguished from sexual orientaon, which refers to an individual's enduring physical, romanc, and/or emoonal aracon to another person.8 Transgender, by contrast, relates to one's internal idenficaon as a parcular gender. Thus, to idenfy as transgender does not necessarily determine one's sexual orientaon as gay, lesbian or bisexual. Background and Issues Faced by Transgender Persons in India Ostracised from mainstream society and vicm of widespread discriminaon, India's transgender populaon remains one of the country's most marginalised groups. It is esmated that there are between 2-3 million transgender persons living in India, with some calculaons even higher.9

5Trans Student Educaonal Resources, Trans and Queer Definions accessed at hp://www.transstudent.org/definions 6A person whose gender does not correspond to the gender assigned to them at birth and has made, or is making, the transion within the gender binary. 7A person who is born with sexual organs/hormones/chromosome paerns which do not conform unambiguously to one gender i.e they do not fit the binary noons of male or female. 8American Psychological Associaon ‘Answers to Your Quesons about Transgender People, Gender Identy and Gender Expression’ accessed at hp://www.apa.org/topics/lgbt/transgender.aspx 9See for example The BBC, India court recognises transgender people as third gender, April 2014 accessed at hp://www.bbc.com/news/world-asia-india-27031180 The Independent, India court recognises transgender people as 'third gender', April 2014 accessed at hp://www.independent.co.uk/news/world/asia/landmark-indian-transgender-law-change-as-court-rules-third-gender- must-be-recognised-9263813.html Hindustan Times, ManabiBandopadhyay: India's first transgender college principal, May 2015 accessed at hp://www.hindustanmes.com/kolkata/manabi-bandopadhyay-india-s-first-transgender-college-principal/arcle1- 1351700.aspx Global Press Journal, Radio Gives Voice to India’s Transgender Community July 2012 accessed at hp://globalpressjournal.com/pt-br/asia/india/radio-gives-voice-india-s-transgender-community

32 Transgender persons have been excluded and vilified since the period of the Brish Raj. Prior to this, they played a prominent role in the Delhi Sultanate and Mughal royal courts, in parcular under the Delhi Khiljis in the thirteenth and fourteenth centuries, and the Mughals from the sixteenth to nineteenth centuries.10 Transgender persons – or Hijras - enjoyed influenal posions and were accorded much respect. They were trusted to guard and protect women's palaces, as well as serving as watchmen, guards and messengers throughout the palaces and even advisers to the king.

During the era of the Brish Raj, however, the percepon of Hijras was drascally altered. The Brish considered Hijras as 'a breach of public decency' and categorised them as a 'criminal tribe' or 'criminal caste' under the Criminal Tribes Act 1871. Secon 377 of the Indian Penal Code was used as an instrument of harassment and physical abuse against Hijras and transgender persons.These measures lead to the ostracism of the Hijra community, stripping them of their civil rights and status. Due to severe social and economic discriminaon, Hijras were cut off from society, unable to work and subjected to everyday abuse because of their idenes. Indeed, the term 'Hijra' came to be used with contempt, as a derogatory term, with such senment sll present at mes even today.

Despite the denoficaon of Hijras following Indian independence and the passing of the Criminal Tribes Act 1952, the marginalisaon of and systemac discriminaon against the transgender community connued long aer the collapse of Brish rule in India, and is even present today. Widespread and deeply entrenched discriminaon has prevented the majority of transgender persons from accessing educaon, healthcare, housing and employment, and fuels social exclusion from the rest of society. Treated as untouchables, many transgender persons in India have been abandoned by their own families and forced to turn to begging or prostuon. Fact-Finding Team

Name Posion

Seva Soren Advocate, HRLN – Cuack

Sarita Barpanda Director, Reproducve Rights Iniave, HRLN – Ne w Delhi

Smri Minocha Director, Women’s Jusce Iniave, HRLN – New Delhi

Sarah Crowe Intern, HRLN – New Delhi

10* Gayatri Reddy, With Respect to Sex: Negoang Hijra Identy in South India University of Chicago Press 2005 p8 11Preston, Laurence W. 1987. A Right to Exist: Eunuchs and the State in Nineteenth-Century India. Modern Asian Studies 21 (2): 371–87 12Criminalising sexual acvies "against the order of nature", arguably including homosexual acts 13Writ Peon No. 400 of 2012 with Writ Peon No. 604 of 2013 para 18 14Denofied tribes also known as VimuktaJa

33 Meeng with Transgender Group in Cuack The fact finding team met with the transgender community members in Cuack on 20th of July, 2015. It is a smaller and less visible community compared to group in Bhubaneswar. According to this group, there are 25 transgender persons living in Cuack. Out of these 25, seven (07) persons are living with HIV (28%). The team travelled to PHD Colony, popularly known as “local business hub”, near Matrubhawan School, Sankarpur, P.S Badambadi in central Cuack. The team spoke with a group of 5 transgender persons, however two or three others present chose to stay silent on the subject. Team interviewed Mithi Sahoo, a guru, and four of her chelas within the age group of 22 to 30 years. The interviews consisted of quesons surrounding the issues of discriminaon, educaon and employment, health, living condions, family, toilet facilies and transgender-specific services in Odisha (parcularly in light of NALSA). 1) Discriminaon and Social Exclusion- The respondents were asked whether they had experienced discriminaon based on their gender identy. They were also asked about public percepon of transgender persons in their area. Mithi did not share any personal experience but talked about her friend Sonny Kinnar's(22years) experience at the Medical Campus ART Centre near Tarini Mandir, Mangalabag. Sonny was not only humiliated and verbally abused by the medical worker named Pradeep Sahoo but also aacked her with a pair of scissors. Sonny sustained minor injuries. Mithi informed us that the accused medical worker already had a number of allegaons against him prior to this incident. Pradeep has been asked to disconnue working at the centre. An FIR (no.0048) was filed at Mangalabag Police Staon on 8th March 2015 (see Annexure 1). Sonny has never heard of any invesgaon or update from the police since she filed the complaint. The group suspect it has been forgoen.

34 2) Health- Apart from the incident menoned above concerning Sonny Kinnar, the respondents were posive about the behaviour of medical staff towards them. Mithi, who is HIV posive, is the only one (out of seven posive transgender persons) receiving An- Retroviral Therapy (ART) free of cost at the public hospital. There are no transgender specific HIV services in Odisha. However, she has no problem in accessing ART that is available at the public hospital. Mithi also stated that she is the only one receiving Madhu Babu Pension Yojana (MBPY). She has a bank account and passbook. Complexies of applying for MBPY dissuade TG from availing its benefits. MBPY requires a bank account, passbook, ID card, filing of applicaon at Gram Sabha and compromises confidenality are issues of concern. The government has ignored direcon 4 of the Supreme Court's judgment in NALSA, in which it directed states to introduce separate HIV servo-surveillance centres for transgender persons. 3) SRS (Sex Reassignment Surgery) - SRS is an integral part of a TGs transion and necessary for their mental well being. Unlike states like Tamil Nadu and Karnataka, Odisha does not provide SRS in public hospitals except for two private hospitals. These hospitals provide lile or no counselling crucial to the successful performance of SRS. SRS is expensive in Odisha and can cost up to Rupees 80,000. TGs are expected to travel Bihar (cheaper than Odisha) for operaons where it can cost upto Rupees 25,000. Mithi underwent SRS in January 2015. She could not afford the operaon in Odisha; hence she travelled to Bihar for SRS. They all stated that they would like to have SRS, but they cannot afford it. They stated that if it was provided by the government then they would undergo the procedure. Direcon 6 of the Supreme Court's judgment in NALSA directs the government to take proper measures to provide medical care to transgender persons. For many transgender persons, undergoing SRS is an integral part of their transion and is necessary for their mental wellbeing. Furthermore, the inaccessibility of SRS to a transgender person seeking to undergo this procedure can be said to undermine their right to live with dignity and their right to health, as protected by Arcle 21 of the Indian Constuon. 4) Separate Beds/Wards- There are no separate wards or beds for transgender persons in public hospitals. Transgendered women are either referred to a male or female ward where they do not feel comfortable and do not receive the same quality of care as a cisgender person. As per Mithi's experience, one of her friend was admied to female ward and rest of the women were cooperave. However, she stated that transgender women do not feel comfortable in the female ward. Respondents in other groups shared that oen females are not comfortable with transgender persons in the same ward. All of the respondents stated that the government should provide separate wards and beds for transgender persons. Mithi suggested that at least two or three separate beds specifically for transgender persons should be made available. The state's failure to provide separate hospital beds/wards for transgender persons defies the Supreme Court's judgment (direcon 6), undermines their right to dignity and health (Arcle 21) and undermines Arcle 15 of the Constuon, which protects cizens from discriminaon on grounds of gender. 5) Contracepon- The respondents are aware of how to use contracepon and did not have any problem accessing them. None of the group members had a raon card, meaning they receive no assistance from the government in maintaining adequate nutrion.

35 6) Educaon and Employment- Most of the respondents have passed class 10th. Suman had studied ll 9th standard. Prachi could not pursue further educaon due to financial barriers while Mithi stated that she did not want to study further. All the respondents have used “begging in trains” as means of living. On an average, they are able to earn Rupees 100-200 per day or approximately Rupees 5000 per month. The respondents are ostracised and feel forced to live a life of begging and are unhappy but cling to a dream of geng respectable employment & have aspiraons. Suman and Sofia stated that they did not want to beg, but they were too afraid to apply for other jobs because of public reacon towards them and the fact that society does not generally accept them. The other respondents agreed. There was a consensus amongst the group that they did not want to beg, but needed help geng into other employment. Suman expressed her anguish at being unable to access proper employment and being stuck in a life of begging. Sofia aspires to be a dancer and also cied that all transgender persons have skills and talents and they should be able to fulfil their potenal like anyone else. Prachi dreams of working for the police and Ranjita would like to have her own business. However they do not have the skills, in some cases the educaon, the capital or even the confidence to begin to pursue their goals. The Supreme Court's judgment made direcons for the economic inclusion of transgender persons. In direcon 3, the Centre and State governments is required to treat transgender persons as socially and educaonally backward classes of cizens and extend reservaons in cases of admission in educaonal instuons and for public appointments. In direcon 7, it required the introducon of social welfare schemes for the beerment of transgender persons. The Government of Odisha hasn't taken any steps as required by the Supreme Court. Transgender persons connue to struggle to find employment and receive no assistance from the government in any form. This has failed to protect their rights under Arcle 15 to be free from discriminaon and is being forced to carry out undignified professions. It also undermines the Arcle 21 that guarantees to living life with dignity. 7) Toilet Facilies- There is no separate gender-neutral or transgender toilets in Cuack or Bhubaneswar or if there were any in enre Odisha. The respondents stated that they currently access female public toilets. Even though they haven't faced any problem or harassment yet, they are sll not comfortable using female toilets. Direcon 6 of Supreme Court specifically requires the state to provide transgender persons with separate public toilets. This failure also undermines the right to dignity protected by Arcle 21 of the Constuon. None of the members of the group including Mithi (senior) were aware of NALSA judgement except that, 'now we are cizens of India.' While few others knew that, 'now we have our own identy in society.' One respondent, Suman, stated that she knew nothing of the judgment. No one in the group knew of the implicaons of the judgment, and what legal recognion of their third gender status actually means. Further, none of the respondents were aware that the government of Odisha has been directed to provide a number of transgender-specific services, and its failure to do so is in violaon of the Supreme Court's direcons. SUMMARY OF FINDINGS • No transgender-specific HIV services have been established in Odisha. Free ART is available and accessible in public hospitals. Hospital staff seems generally sensized in Cuack. • Some transgender persons living with HIV cannot access MBPY because they do not have a passbook.

36 • No separate gender neutral/third gender hospital wards or beds have been provided in government hospitals • No separate gender neutral/third gender public toilet facilies have been provided • Access to SRS and counseling is very difficult due to cost. No SRS treatment is provided by the government. • Public atude is improving, but sgma is sll prevenng transgender persons from purchasing land and renng properes. Transgender persons in Cuack have no access to government housing schemes. • The primary occupaon of transgender persons in Cuack is begging. Others also engage in sex work. Transgender persons are receiving no livelihood support or support to help them into other employment. • While police harassment does not appear to be an issue according to this group, it is clear that group members avoided reporng incidents of discriminaon to the police as they feel the police does not understand or sympathise. • The group have not formally changed their name/status and are not aware of the implicaons of doing so. • The group did not know their rights and entlements as pronounced in the NALSA Judgment. Meeng at the Department for Social Jusce and Empowerment On 21st July 2015, the fact finding team (HRLN) aended a meeng at the Department for Social Jusce and Empowerment (DoSJE) at Capital Hospital, Bhubaneswar. The meeng saw representaon from 23 members of TG community, Secretary and Director of the Department of Social Jusce and Empowerment, HIV Alliance India, SAATHI, All Odisha Eunuch and Third Gender Associaon (AOETA). The purpose of the meeng was to bolster a dialogue between the transgender community in Odisha and the state government. This was in order to express concerns and grievances, as well as to catalyse the establishment of government transgender welfare board or commiee which has been in pipeline for at least three years, but has not materialised. The representaves invited the government to address the following key issues: 1. Educaon – To ensure provision of choices for transgender persons regarding educaon and receive an educaon that will allow them to access meaningful employment. 2. Employment opportunies – creang employment opportunies for TGs so that they are not forced to beg or engage in sex work to make a living. Since majority of transgender persons do not want to beg or engage in sex work, they asked for alternaves. 3. Health – Access to free SRS, HIV treatment and separate beds/wards. States like Tamil Nadu and Karnataka provide free SRS, whereas SRS in Odisha is expensive and costs double the amount if the person is HIV posive. Also the cost of SRS differs in Odisha depending on the doctor. It was suggested to develop naonal/regional guidelines for SRS. 4. Housing and land – difficulty in accessing Biju Paka Ghara Yojana and renng & purchasing land/property. 5. Awareness – of the NALSA decision amongst transgender persons and awareness of transgender issues amongst members of the government and public.

6. Access to social welfare schemes – transgender persons living in Odisha has no access to government social welfare schemes.

37 7. Livelihood support – To provide transgender persons in Odisha livelihood support that would enable them to transion into employment from begging and prostuon. 8. Advocang a safe space for transgender persons – e.g. a shelter/community centre, especially due to the level of migraon of transgender persons to Bhubaneswar from other areas of Odisha. 9. Advocang the establishment of a 'third gender' desk at police staons and providing further training to sensise the police. 10. Provision of ID cards to all transgender persons – difficulty in opening bank accounts, accessing government schemes without ID cards. 11. To conduct a proper esmaon of the number of transgender persons living in Odisha that will also give weight to transgender persons' struggle for equal access to housing, employment and government schemes. 12. Public toilets – To have separate gender neutral or third gender toilets. Failure to implement nalsa and violaon of fundamental human rights

Supreme Court Direcon in NALSA Violaon by the state

1. Hijras, Eunuchs, apart from binary gender, · A number of violaons of transgender persons’ be treated as “third gender” for the purpose Constuonal rights connue to occur, with no of safeguarding their rights under Part III of intervenon from the state. the Constuon and the laws made by the The right to dignity contained in Arcle 21 is Parliament and the State Legislature. ·

undermined by the social and economic exclusion they connue to face. No measures have been taken to remedy this.

· The right to health contained in Arcle 21 is undermined by the failure to provide appropriate healthcare services, including transgender-specific HIV services, free

contracepon or SRS

· The right to be free from discriminaon under Arcle 15 connues to be violated, including in general public, in accessing housing or employment. No measures taken by the state to address this. No reservaons of public posts have been made for transgender persons, violang Arcle 16. Sgma connues to curb transgender persons’ right to freedom of expression contained in Arcle 19.

38 2. Transgender persons’ right to decide their · State has not been consistent in issuing ID cards self-idenfied gender is also upheld and the recognising transgender persons’ gender Centre and State Governments are directed identy. to grant legal recognion of their gender · State has not been cooperang in publishing identy such as male, female or as third

changed names/status. gender.

3. The Centre and the State Governments to · Transgender persons living in Odisha have are directed to take steps to treat received no assistance in accessing educaon or transgender persons as socially and employment in the public sector. educaonally backward classes of cizens No express reservaons have been made or and extend all kinds of reservaon in cases · implemented for places in educaonal of admission in educaonal instuons and instuons or public appointments. for public appointmen ts. 4. Centre and State Governments are directed · No separate HIV Sero -surveillance centres have to operate separate HIV Sero -surveillance been introduced by the government. Centres since Hijras/Transgender persons · There are no transgender-specific HIV services in face several sexual health issues. Odisha which take account of transgender 5. Centre and State Governments should persons’ very different health needs

seriously address the problems being faced · No measures have been taken to reduce sgma by Hijras/Transgender persons such as fear, or facilitate social inclusion. shame, gender dysphoria, social pressure, depression, suicidal tendencies, social · No tailored health services have been provided

sgma, etc. and any insistence for SRS for which are designed to support transgender declaring one’s gender as is immoral and persons’ parcular vulnerabilies.

illegal.

6. Centre and State Governments should take · No separate wards or beds in hospitals and no proper measures to provide medical care to separate public toilets have been provided. TGs in the hospitals and also provide them · No transgender -specific facilies have been separate public toilets and other facilies. introduced.

· No free SRS or counselling

· No free or subsidized contracepon · No transgender specific HIV services

39 7. Centre and State Governments should also · No access to social welfare schemes such as take steps for framing various social welfare education support, livelihood support, pensions schemes for their beerment. or housing schemes.

· Inconsistent access to MBPY.

8. Centre and State Governments should take · No steps have been taken to create public steps to create public awareness so that TGs awareness of transgender issues to encourage will feel that they are also part and parcel of understanding and acceptance.

the social life and be not treated as untouchables. 9. Centre and the State Governments should · No steps have been taken to include transgender also take measures to regain their respect persons in mainstream society such as facilitang and place in the society which once they their access to employment.

enjoyed in our cultural and social life.

Recommendaons A team of ten representaves from TG community and other organisaons was appointed for conducng meaning discussions with the state in future. Sarita Barpanda and Seva Soren were included as representaves from HRLN.

The following measures were proposed by the government representave to be provided by the state government of Odisha:

· Financial support for transgender parents with children.

· Financial support for transgender persons studying in classes 8-10.

· Financial support for TG persons pursuing higher studies within India beyond class11.

· Skill development training.

· Loan of up to 5 lakh, with government subsidy of up to 2 lakh.

· Naonal pension scheme for transgender persons above 60.

The director of the DoSJE ensured best efforts in implemenng above menoned proposals. He also stated that this was just the beginning of a process which would take considerable me. He emphasised that the appointment of the 10 representaves was merely to engage in a dialogue with the government, and did not constute the establishment transgender board or commiee.

It should be noted that other states in India such as Tamil Nadu and Maharashtra have their own transgender welfare boards, designed to ensure that transgender persons' needs and entlements are met. The government of Odisha, however, is sll refusing to commit to the establishment of a similar board in Odisha.

40 Conclusion The fact-finding team learned that, despite the Supreme Court's landmark decision in NALSA, the lives of transgender persons living in Odisha remain subject to discriminaon and hardship. Transgender persons sll struggle to access basic services and support that other persons rely upon or even take for granted. Ingrained sgma has maintained their struggle in accessing housing, land, educaon and employment. Our findings have demonstrated that transgender persons are afforded no support from the government in accessing employment, causing them to be unwillingly trapped in occupaons such as begging and sex work. They also receive no assistance with accessing proper housing and are not included in any other welfare schemes. No separate, transgender-specific services have been provided since the judgment. As such, the Government of Odisha has failed on all accounts to implement the Supreme Court's judgement in NALSA. In its treatment of transgender persons, the Government of Odisha is failing to protect their constuonal rights, as well as violang a number of internaonal human rights instruments. The findings across the three groups – the group in Cuack, the group at the Department of Social Jusce and Empowerment and the group in Bhubaneswar – largely corroborated one another. The main differences were that the group in Cuack appeared to experience less public harassment than reported by the other two groups, and reported that they could access contracepon easily – unlike the group in Bhubaneswar. All groups were clear that no transgender-specific services or support schemes have been introduced by the government of Odisha. It was clear that there is sll a lack of public sensisaon of transgender issues, with verbal abuse and discriminaon sll common. The Cuack group appeared to experience less issues in this respect, although they aributed this to the NALSA judgement and not to anything done by the government. This sgmasaon is also sll apparent amongst some public service providers, including medical staff and the police. Our findings show that instances of assault, verbal abuse and sgmasaon sll occur, and that the government has taken no steps to provide training or awareness raising programmes to address this. Transgender persons are, for the majority, working as beggars and prostutes because they simply have no alternave. Employers will not employ them, or if they are employed, they may not be paid or dismissed. All respondents made it clear that they are not begging and engaging in sex work because it is what they want to do. They do it because otherwise they will starve. The government has provided no support to help transgender persons into meaningful employment or to ensure access to further educaon. No transgender-specific health services are available in Odisha. While respondents informed us that they can access free HIV treatment in public hospitals, there remains no transgender-specific HIV service which fully accounts for their parcular needs and circumstances. Furthermore, there is no publicly funded or subsidised SRS or counselling. The SRS available in private hospitals in Odisha is extoronate and no counselling is available, meaning that transgender persons in Odisha are forced to travel to other states for SRS or not have it at all. This is a major issue, as, for some, SRS is crucial in fulfilling their own sense of identy. Without it, many face psychological issues. Odisha public hospitals have no separate beds or wards for transgender persons, meaning that transgender persons have to go through the undignified experience of being placed in the male ward, where they are not comfortable, or the female ward, where neither they nor the female paents are comfortable. Accessing a separate bed in a private hospital is not affordable. Worryingly, access to contracepon is also a struggle for many transgender persons. The disconnuaon of government subsidised

41 condoms means that sex workers have to meet the cost themselves. This is extremely worrying, as the inaccessibility of contracepon may lead to more cases of HIV amongst the transgender community. For transgender persons in Odisha, the inaccessibility of proper housing remains a key issue. They are not included in any government housing schemes. Due to sgmasaon, they find it difficult to rent property or purchase land. No separate gender neutral or third gender public toilet facilies for transgender persons have been introduced. With regards to their civil status, many transgender persons have been issued with an ID card describing their gender as 'other.' Distribuon of these cards has been inconsistent, however, and a quarter of respondents interviewed did not have a card. The process of changing their names and status in official documents is long and laborious and not met by government cooperaon. Furthermore, many respondents were not aware of the importance of updang their records for accessing employment in the future. Overall, it can be clearly concluded that both the Central Government and State Government of Odisha have failed to implement the NALSA judgment. The majority of direcons have not been implemented at all, with one direcon only parally implemented. As such, the fundamental rights of transgender persons in the state of Odisha have been violated by the state. The state's failure to guarantee these fundamental protecons has resulted in connued hardship faced by transgender communies across Odisha. These direcons were made by the Supreme Court because they are what is required for transgender persons to be placed on an equal foong with others. They are what is required for transgender persons to enjoy their constuonally protected, fundamental rights in the same way as other cizens. As a maer of priority, these direcons must be implemented and the issues raised in this report addressed, in order that transgender persons may enjoy a quality of life that is determined by their choices, hard work and ideas – not by their gender.

42 MATERNAL DEATH IN ODISHA

Background The State of Odisha is located on east coast of India by the Bay of Bengal. It is divided into 30 districts. According to the 2011 Census, the State has a populaon of 43,228,228 people spread over 155,707 square kilometers.1 Over 80.9% of Odias live in rural areas, which is significantly higher than the naonal average of 68.8%.2 This is significant because it is generally more difficult for people in rural areas, especially women and children, to access necessary health services. As an overall measure of health, total life expectancy in Odisha is 59.5 years (59.6 for females, 59.5 for males), which is substanally lower than the naonal average of 63.4 years (64.2 for females, 62.6 for males).3

1HMIS Analysis – Odisha Across Districts, Apr '14 to Sep '14, Naonal Rural Health Mission (14 Nov. 2014). Analyzing data from the 2011 Census. 2Census of India 2011, Orissa Profile, available at hp://censusindia.gov.in/2011census/censusinfo dashboard/stock/profiles/en/IND021_Orissa.pdf; Census of India 2011, India Profile, available at hp:// censusindia.gov.in/2011census/censusinfodashboard/stock/profiles/en/IND_India.pdf. 3High Focus States – Other than NE, Naonal Rural Health Mission (30 Sep. 2014). Analyzing data from the 2011 Census.

43 Every year, India has more maternal deaths than any other country in the world. With approximately 17.3% of the world's populaon,4 India accounts for 19% of the world's maternal deaths.5 According to the numbers of 2013, 56,000 women in India lost their lives due to pregnancy-related complicaons.6 Moreover, India's rate of progress in reducing these deaths lags behind that of other countries in the region.7 Right now, India is far from reaching its united Naons Millennium Development Goal (MDG) 2015 targets for reducing maternal mortality. Thus, thousands of Indian women connue to die needlessly from wholly preventable causes.

While India has performed poorly on maternal healthcare, Odisha's performance has been even worse. Not only is the State responsible for a disproporonate share of India's maternal deaths, but its progress in reducing these deaths has also been slower than the naonal average. As a result, the State lags behind the rest of the country in all the key maternal and child mortality indicators (i.e., maternal mortality, under-five mortality, infant mortality, and neonatal mortality). While a handful of Indian states are on track to hit at least one of their 2015 MDG targets for reducing maternal and child mortality, Odisha lags behind on all fronts.8

Every year India experiences 56,000 maternal deaths, which represents153 deaths per day, or just over six deaths per hour.9 A maternal death is defined as the death of a woman while pregnant, during childbirth, or within 42 days of terminaon of pregnancy from any cause related to or aggravated by the pregnancy or its management.10

The vast majority of maternal deaths are wholly preventable. Maternal health experts have determined that three preventable delays result in maternal death: (1) an inial delay in obtaining quality antenatal care; (2) a delay in reaching care (e.g., poor infrastructure, unavailable or costly transportaon, connual referrals); and (3) a delay in receiving quality care at a medical facility (e.g., inadequate staff, facilies, supplies, hygiene). These might be considered the social and governmental causes of death, which inevitably precede the direct medical causes of death discussed next.

In India, the most frequent direct medical causes of maternal death are postpartum hemorrhaging (PPH),

4Based on 2011 figures from Census of India 2011, India Profile (calculang India's 2011 populaon at 1.21 crore) and Populaon R e f e r e n c e B u r e a u , 2 0 1 1 W o r l d P o p u l a o n D a t a S h e e t , a v a i l a b l e a t h p : / / www.prb.org/pdf11/2011populaon-data-sheet_eng.pdf (esmang 2011 world populaon at 7 crore). The highest esmate of India's populaon as a percentage of world populaon that the authors have seen is 17.9% from Populaon Reference Bureau, 2013 World Populaon Data Sheet, pp. 2–3, available at hp://www.prb.org/pdf13/2013-populaon-data-sheet_eng.pdf. 5A Strategic Approach to Reproducve, Maternal, Newborn, Child and Adolescent Health in India, Ministry Of Health and Family Welfare, pg. 4 (Jan. 2013) 6hp://nrhm.gov.in/images/pdf/RMNCH+A/RMNCH+A_Strategy.pdf.Id. 7See WHO & UNICEF, Countdown to 2015: Maternal, Newborn & Child Survival (2010), pp. 8–9. 8Government of India, Ministry of Stascs and Programme Implementaon, Social Stascs Division, Millennium Development Goals: India Country Report 2014 [hereinaer Government of India, MDGs: India Country Report 2014], pp. 57–93 & Appendix 6, pp. xxxvi–xliii (Tables 11–17),available at hp://mospi.nic.in/Mospi_New/upload/mdg_2014_28jan14.pdf. (analyzing Indian States' performance). 9A Strategic Approach to Reproducve, Maternal, Newborn, Child and Adolescent Health in India, Ministry Of Health and Family Welfare, pg. 4 (Jan. 2013) hp://nrhm.gov.in/images/pdf/RMNCH+A/RMNCH+A_Strategy.pdf. 10WHO, Maternal Mortality Rao, hp://www.who.int/healthinfo/stascs/indmaternalmortality/en/.

44 oen from lack of blood at health facilies; post-delivery infecon, from lack of access to hygienic instuonal delivery; and anaemia and malnourishment. The final two are caused by inadequate nutrion and significantly increase a pregnant woman's chance of maternal death or morbidity. Other major medical causes include high blood pressure during pregnancy (eclampsia and pre-eclampsia), unsafe aboron, obstructed labour, and infecous diseases such as malaria.

In measuring maternal deaths, the most important stascal indicator is the Maternal Mortality Rao (MMR), which esmates the number of maternal deaths per 1 lakh live births. According to WHO and three other UN agencies using 2013 stascs, India's MMR is 190.11 The MDGs require countries to reduce their MMR by 75% between 1990 and 2015.India's 2015 MMR target is 109, but due to inadequate access to healthcare and poor quality of services, the country is only projected to achieve a MMR of 140 by 2015.India will therefore fail to hit its target by 31 lives per 100,000.12 For a country with more than 2.56 crore live births in 2012 (a number that increases every year), this failure represents at least 7900 addional maternal deaths per year in India.13

Unfortunately, Odisha's MMR of 235 is 32% higher than the naonal average. Moreover, under the MDGs, Odisha should reduce its MMR to 121 by 2015, but the State is only projected to achieve a MMR of 202, thus failing to meet its target by an even larger margin of 81 lives per 100,000.14 With the State's 8.23 lakhs annual live births, this failure represents approximately an excess of 667 maternal deaths per year in Odisha. According to the District Level Health Survey 2007–2008 (DLHS-3), more women in Odisha15 received antenatal checkups (ANCs) in government facilies than the naonal average. In Odisha, 84.0% of pregnant women having had some antenatal care, of which 58.9% used a public health facility.16 Similarly, a higher percentage of pregnant women in Odisha (23.2%) had full antenatal care than the naonal average (18.8%).17

The DLHS-3 Naonal Family Health Survey 2005–2006 (NFHS-3) put the rate of instuonal delivery, anaemia, and contracepve use in Odisha all below the naonal averages. The rate of instuonal delivery in Odisha is 44.1%, also below the naonal average of 46.9%.18 Anaemia is a blood condion caused by malnutrion that

11WHO, UNICEF, UNFPA & The World Bank, Trends in Maternal Mortality: 1990–2013, p.32. 12Government of India, MDGs: India Country Report 2014, p. 8. 13UNICEF, India Stascs, hp://www.unicef.org/infobycountry/india_stascs.html. 14Government of India, MDGs: India Country Report 2014, Appendix 6, p. xlii (Table 16). 15See note 9 above & accompanying text for discussion of the 8.23 lakh annual live births figure. 16Government of India, Ministry of Health & Family Welfare, District Level Household and Facility Survey 2007–08, April 2010 [ h e r e i n a e r G o v e r n m e n t o f I n d i a , D L H S - 3 ] , p . 5 6 ( T a b l e 4 . 2 ) , a v a i l a b l e a t h p : / / mohfw.nic.in/WriteReadData/l892s/DLHS%20III.pdf. 17Id., p. 62 (Table 4.5B). 18Id., p. 70 (Table 4.8).

45 puts women at significantly higher risk for maternal death, maternal morbidity, premature delivery, and low birth weight. Odia women are much more likely to be anaemic (61.2%) than the average Indian woman (55.3%).19

As for the use of contracepve among women within the age group of 15-49 years, only 48.2% of Odia women use any contracepve method, and only 39.6% are using a modern method of contracepon. Furthermore, the unmet need for family planning is 23.1% in Odisha, compared with 20.5% naonally.20 These low numbers are troubling because to fully exercise their reproducve rights, women must have access to a wide range of contracepves, informaon about those opons, and the medical care necessary to effecvely exercise their choices.

In 2005, the Government of India launched the Naonal Rural Health Mission (NRHM) with the goal of “improving the availability of access to quality health care by people, especially for those residing in rural areas, the poor, women and children through equitable, affordable, accountable and effecve primary healthcare.”21 To this end, the NRHM sought to deliver maternal and child health services through three levels of healthcare facilies (i.e., sub-centres, PHCs, and CHCs), in addion to fourth and fih levels of facilies provided by sub-district hospitals and district hospitals.

Methodology

Between 14 March and 15 March 2015, health rights acvists conducted a fact-finding mission in the Rayagada District of Odisha following the death of, Sikoka Alme, who was pregnant.

Deceased Sikoka Alme

Husband Sikoka Salupu

K. Triveni – Badabamanaguda Anganwadi Centre Anganwadi Worker Janaki Kurdia – K arnjia Anganwadi Centre

CHC Chief Medical Officer Dr. S. Dalei – K aylansingpur

CDMO Anant Padhi – Rayagada

19Government of India, Ministry of Health & Family Welfare, Naonal Family Health Survey 2006–2006, [hereinaer Government o f I n d i a , N F H S - 3 ] , V o l . I , p . 3 1 3 ( T a b l e 1 0 . 2 5 ) , a v a i l a b l e a t h p : / / p d f . u s a i d . g o v / pdf_docs/PNADK385.pdf. 20Government of India, DLHS-3, pp. 122 (Table 6.7), 137 (Table 6.16). 21Government of India, Ministry of Health and Family Welfare, Naonal Rural Health Mission, Framework for Implementaon 2005–2012 [hereinaer “Government of India, NHRM 2005–2012 Framework”], p. 8.

46 The preventable death is due to poor provision of health services at all levels of the health care system. The purpose of the fact-finding was to ascertain possible explanaons for the death. The fact-finding team consisted of two reporters from the local news who first broke the story, four social acvists from the Human Rights Law Network, and a mul-purpose worker from the government. The team visited the woman's village, the Anganwadi Workers (AWW) the aending physician and the Chief District Medical Officer. The team successfully met with the family, the AWWs and the physician at the CHC and captured the full picture of the events of Alme's last day. Maternal Death Case Alme lived in the village of Tentulipadar. Alme is Salupu's second wife. He lost his first wife to tuberculosis aer she delivered five children. His marriage to the Alme was brief, having only taken place in July 2014. Shortly following their marriage, Alme became pregnant for the first me. Salupu explained that Alme had been staying with her mother in law (MIL) for the three months prior to her death, per tradional mandate. On 24th of February, 2015, at approximately 6PM, Alme began to experience severe abdominal pain. At this me, Salupu walked for 20 minutes to reach his mother's house and the tradional birth aendant was called. Soon aer it was decided that Alme would require medical assistance, it had become too dark to begin the journey down to the CHC in Kalyansingpur. At approximately 6 PM on 25th of February 2015, a “dola” was fashioned from a large bamboo sck and a blanket, and Alme sat in this while two males stood on either side and carried her to the CHC. They arrived to the CHC around 11 AM. According to Salupu, the workers at the CHC said Husband there was nothing that they could do for his wife. At that point, the doctors started Alme on an intravenous (IV) fluid, and referred her to the District Hospital in Rayagada. The doctors dialed 108, the number for an ambulance dispatch service, but the family was told there was no vehicle that could take her to Rayagada. The family then called 102, another dispatch service for pregnant women, and the 102 workers rudely stated that no vehicle was available either. The CHC finally provided an ambulance to go to Rayagada. Unfortunately, Alme perished in the ambulance en route. Aer Alme passed away, the ambulance turned around, not bothering to see if a cesarean secon would save the foetus. The ambulance that carries the dead is not covered by any scheme, but because Alme came from a primive tribal group, the CHC said they would provide transportaon of her body back to the village free of charge. However, the ambulance only took her body to Melakajuba before they said they would not take it any further. This incited an argument, aer someme which the authories were called. The authories told Salupu to take his wife and get her home. Salupu and the other villagers then had to carry Alme's body the rest of the way up the mountain to be cremated. For the cremaon ceremony, Red Cross has provided Rs. 10,000, and an addional Rs. 2,000 has been given by virtue of the Harishandra Yoshina scheme. Alme has since been cremated. No autopsy was performed aer her death, because of a Dongria Kondh belief that once the deceased has been cut open, they will no longer be able to be reincarnated. Someme aer her death, an Assistant District Medical Officer (ADMO) came to visit

47 the village. Salupu informed the ADMO that he was furious at the service that was given to his wife and stated that had an ambulance arrived on me, two lives could have been saved. He then stated that the State owes 2 lakhs for their part in his wife's death. Meeng with Anganwadi Workers

The Anganwadi Workers (AWWs) for Tentulipadar live in a village called Melakajuba, which is approximately 3 kms away. There are two women filling the role of AWWs for this region. These women serve as the first point of contact for all pregnant women in the area. These women then refer the pregnant women on to a Mobile Health Unit (MHU) and an ASHA. Between the three of them, there should be adequate care for all expecng women. This care shall extend to geng the woman to the hospital safely when she is giving birth.

In addion to being the first point of contact, these AWWs are meant to make rounds of the villages in their care and to provide pregnant women with Maternal and Child Protecon Cards, or “Mamata cards” nutrional supplements during pregnancy. These supplements are given to the women to prevent anemia and other problems that may arise as a result of malnourished during pregnancy. However, the AWWs stated that they have not made these rounds for a while, waing instead for the villagers to approach the center for services. The AWWs stated that there are currently four pregnant women that they are aware of in their area of care.

When asked about the pregnant woman that the fact-finders had seen in Tentulipadar earlier that day, the women quickly added that to their count, stang that there were in fact five pregnant women currently in their region. The AWWs said that they had provided the supplements and addional care to Alme, though the husband had previously insisted that no such care had been provided. When pressed further about their acons to provide Alme with proper care during her pregnancy, the AWWs merely stated that she was a drunk and acted as though taking care of her was hopeless. When asked about the pregnant woman on the ground, the AWWs said that they were also caring for her, though again, the villagers said that they had not seen anyone come to help her.

An issue of parcular concern in this case was the failure to provide a Mamata card to Alme. The AWWs stated that the state does not provide an adequate stock of cards, and thus they have started making photocopies of the one they have. They then charge the villagers Rs. 20 for each one, despite the fact that Mamata cards are to be given free of charge.

Another shocking discovery during the meeng with the AWWs is their general lack of knowledge about the supplements they are providing. The women were asked about the expiry date of the supplements and they responded that they did not know. They then went in search of raons and upon their return it was discovered that there is no expiraon date on them. They say that they are not informed of this informaon when it is distributed to them, only that they must distribute it to the women who are pregnant.

48 Meeng with the doctor on duty Dr. Dalei was on duty when Alme died. Dr. Dalei stated that when Alme arrived at 11:15 AM, she was already in shock, had very low fluid levels and was slightly anemic. He also noted that he had been told she had been experiencing pain since the night before; though due to the poor condions of the road, the family had delayed bringing her down to receive help. Dr. Dalei then stated that it was evident that the CHC could not adequately treat Alme. Upon this realizaon, they administered anbiocs and started an IV drip, then referred her to Rayagada District Hospital. At that point, the 108 ambulance dispatcher was called and the doctor had to explain Alme's condion over the phone for approximately 10 minutes. He explained that she was in shock, and the ambulance team asked if he meant that she had been electrically shocked. Aer such a long conversaon, he finally told the ambulance service that there was a heart situaon, and they needed to come immediately. He stated that it took approximately an hour and a half for them to get to the CHC. This is inconsistent with the postmortem report that was filed with the ADMO, which stated that it only took 40 minutes for the ambulance to arrive. Dr. Dalei stated that by the me the ambulance had arrived, it seemed evident that the deceased would not survive the trip to Rayagada DH. When asked about the condion of the foetus and if a cesarean secon would have saved it, he stated that he was sure the foetus was dead, because he did not hear a foetal pulse, and did not feel any movement from the belly. Alme perished in the ambulance on the way to Rayagada at approximately 2 PM. The official cause of death was sepc shock. Dr. Dalei agreed with the AWW in that the Mamata cards are not adequately provided by the state, and in this parcular instance, it was fatal. He had no informaon on her condion or the details of her pregnancy, because Alme did not have a Mamata card. The postmortem report filed by the doctor does state however, that Alme had received mulple ANCs, though without a Mamata card, there could be no way to verify this, and the family insists that she received no care during her pregnancy. Interesngly, Dr. Dalei was under the impression that this was her third husband and that she had previously given birth to five other children, which was noted in his report. The family stated that this was her first marriage and first child. Findings

· Fatal breakdown in the applicaon of schemes intended to provide pregnant women with safe and free health care during their pregnancy.

· Failure to provide antenatal care.

· Lack of adequate services to primive tribal groups living in remote regions.

· Lack of oversight and punishment for services not rendered.

· Failure to engage services provided through the Mobile Medical Health Iniave during pregnancy, delivery and postpartum care.

· Failure in delivery of key emergency services. (e.g. the ambulance services provided through toll free numbers 102 and 108).

· Communicaon barrier between service providers, including AWWs and village members.

· Weak referral mechanisms between service providers (e.g. lack of AWWs providing a Mamata card which would have allowed the doctor to see any crical informaon about her pregnancy).

49 Conclusion The fact-finding team was profoundly disturbed by the details surrounding the death of this woman. There is a system in place that is designed to provide adequate care for pregnant women in each of these villages, and yet they are not properly administered. This is a direct violaon of mulple internaonal agreements that India is a party to, establishing a right to survive pregnancy and childbirth. The government of India has created mulple schemes to help provide services that guarantee pregnant women that right. In this parcular instance, there was a breakdown in the referral mechanisms which prevented antenatal care from being distributed, prevented the doctor from being able to understand his paent's condion when she arrived, and a failure to get her to a hospital that could treat her in me. All of these resulted in a failure to avert a preventable maternal mortality, a violaon of her right to survive pregnancy and child birth. The State has failed to provide meaningful amenies to this village, providing them with useless solar panels, when a working road would be more appropriate. The lack of oversight and accountability has created an environment rampant with failures that have finally resulted in death. The CHC and ambulance services both failed in their inability to respond quickly with services that could have saved this woman's life. Finally, but far from least importantly, the AWWs connue to collect incenves for a job they are not doing, which could have prevented the death of this woman. The need for correcve acon in this district is blatantly obvious, and needs to be taken immediately. If these aforemenoned instances are not egregious enough, it was seen that the AWWs are also receiving some small, though illegal, financial compensaon from the village women. The AWWs stated that they are not receiving Mamta cards from the government, and so have been making photocopies of the card that they have. The AWWs then sell those cards to the village women for Rupees 20, when the cards are meant to be provided free of charge. For those living in extreme poverty, this could create a barrier to life saving services.

50 PRIMARY HEALTH SERVICES FALLING APART: A CASE STUDY OF A NON-FUNCTIONAL PHC IN ARUNACHAL PRADESH Background Public Health care delivery in India has been envisaged at three levels namely primary, secondary and terary. The secondary level of health care essenally includes Community Health Centres (CHCs), constung the First Referral Units (FRUs) and the Sub-district and District Hospitals. The CHCs were designed to provide referral health care for cases from the Primary Health Centres level and for cases in need of specialist care approaching the centre directly. 4-5 PHCs are included under each CHC thus catering to approximately 80,000 populaons in tribal/hilly/desert areas and 1, 20,000 populaons for plain areas. Desali being a hilly area in the in Lower Debang valley of Arunachal Pradesh should have four fully funconal PHCs under one CHC for a populaon of 80, 000 people.1 Desali is a small village located in the Lower Dibang Valley whose geographical locaon is such that no direct transport or smooth roads are there for the people living in the village. There is unavailability of connuous source of water, electricity, equipment for the hospital, etc. The Primary Health Care centre is non- funconal in Desali. It is located in a remote area of Lower Dibang Valley District. It is a landslide prone zone area and there is no road communicaon. Generally, pregnant women have to walk for 6 hours to reach the highway where there is some possibility of geng a transport. The road to the highway is treacherous and it's very difficult for pregnant women to walk and go for even a normal delivery. Those in need of medical aenon have to travel as far as Jorhat in Assam or Itanagar in Arunachal Pradesh which are 300-400 kms away. Even for regular pregnancy check-ups women are compelled to travel a huge distance. Indian Medical Journal on Health reported that “in A.P. due to remote areas poorly connected by road progress of establishment of health infrastructure has been inadequate. To serve small populaon groups located at high altudes without road communicaon, special sub-centers have been set ups without a local nurse trained to conduct deliveries. Rural Health infrastructure is inadequate parcularly in view of very low density of populaon”. According to IndMED's Naonal Databases of Indian medical Journals, 98.3% of women in Arunachal Pradesh did not receive any home visit from a health worker or family welfare worker compared to the naonal average of 87.0%.2 That the United Naons High Commissioner for Human Rights reported that at least 80% of India's maternal deaths are preventable where women have access to antenatal care, assisted delivery, and post-natal services – essenal maternal and basic health-care services. There are three delays that contribute substanally to preventable maternal mortality: i) delay in seeking treatment, ii) delay in reaching treatment, and iii) delay in receiving adequate treatment upon reaching a medical facility. Despite entlement schemes and Constuonal guarantees to life and health, state failures make these three delays inevitable for women in Arunachal Pradesh, violang women's fundamental rights, destroying families, and endangering lives.

1hp://health.bih.nic.in/docs/guidelines/guidelines-community-health-centres.pdf 2hp://medind.nic.in/haa/t04/i1/haat04i1p1.pdf

51 Health Infrastructure of Arunachal Pradesh3

Parculars Required In posion shorall Sub-centre 356 286 70 Primary Health Centre 53 97 * Community Health Centre 13 48 * Health worker (Female)/ANM at Sub Centres & PHCs 383 395 * Health Worker (Male) at Sub Centres 286 148 138 Health Assistant (Female)/LHV at PHCs 97 NA NA Health Assistant (Male) at PHCs 97 78 19 Doctor at PHCs 97 92 5 Obstetricians & Gynaecologists at CHCs 48 0 48 Paediatricians at CHCs 48 1 47 Total specialists at CHCs 191 1 191 Radiographers at CHCs 48 9 39 Pharmacist at PHCs & CHCs 145 56 89 Laboratory Technicians at PHCs & CHCs 145 88 57 Nursing Staff at PHCs & CHCs 433 293 140

(Source: RHS Bullen, March 2012, M/O Health & F.W., GOI)

Methodology This report is based on findings of an enquiry undertaken by a social coordinator of Prayas, Ajalu Linggi in Arunachal Pradesh. This was done on 25th of July, 2015 with a team. The social worker examined the accessibility of different health instuons by people of the village and whether the instuon provides adequate, accessible, acceptable and quality reproducve and sexual health services or not. Tools like semi structured interview and observaons were used for fact finding of the PHC Desali. The team interviewed an ASHA worker, two ANMs, village women both pregnant and non-pregnant and carried out observaons of the whole health centre at Desali. Observaons of Desali Primary Health Centre (PHC) Infrastructure The PHC building in Desali has been newly constructed. It has fences all around and the floors are smooth and in a good condion. However, the hygiene of the PHC is in a poor state. There is one sweeper who cleans the facility. She doesn't get any facility from the Government such as brooms, mops and disinfectants therefore the facility is not cleaned thoroughly. The observer reported that there was a foul smell in an around

3hp://nrhm.gov.in/nrhm-in-state/state-wise-informaon/arunachal-pradesh.html

52 the PHC. She didn't find any dustbins for disposal of garbage. The locaon of the PHC is such that it can be easily accessed by the village people. Hospital Staff and Services No doctor has been appointed since 2011 so the nurse at the facility prescribes the medicines to the paents. There were no paramedics, staff nurse, clerk or pharmacist at the facility. The social worker didn't find any registraon counters, pharmacy, and laboratory. There were no provisions of contracepves or ORS. There were no kinds of vaccinaons available. She couldn't locate any suggesons or complain box. There were no communicaons facilies present at the facility. The building did not have any labour room or office. There was no water supply. The people of Desali village go to the ANM's house for treatment. The observer located two ANM's (Accredited Nurse and Auxiliary Midwife) in the facility. The facility run by the two ANM's only. Paents go to the ANM's residence for treatment. The average aendance of men and women at the ANM's residence is about 40. The ANM has basic medicines and first aid. The ANM reported that there is a shortage of medicines at her place. Desali PHC receives medicines once a year only and it is not sufficient for the people of the village. The women of the village reported that the sweeper of the PHC helps with all the deliveries in the village. She is like a local nurse (dai) for them. She doesn't have any medical equipment therefore she uses natural methods only. In case of complicaons the women have to go to Assam or Itanagar. The local nurse reported that no doctor or any official visit their PHC and they don't have any way to contact anyone to put their grievances in front of them.

53 Analysis of the present condion of the PHC in context with the IPHS Guidelines

Indian Public Health Standards (IPHS) Violaons PHCs are not spared from issues such as the in ability to Desali PHC failed to provide any facilies due to perform up to the expectaon due to - all the reasons menoned in the le side of this (i) non-availability of doctors at PHCs table whereas no PHC is allowed to give any (ii) even if posted, doctors do not stay at the PHC HQ such reasons for denying treatment to the (iii) inadequate physical infrastructure and facilies paents. (iv) insufficient quanes of drugs

(v) lack of accountability to the public and lack of

community parcipaon (vi) lack of set standards for monitoring quality care etc.

Essenal Physical Infrastructure: i) Loc aon- The area chosen should have facilies for Desali PHC does not have proper electricity and

electricity, all weather road communic aon, adequat e regular water supply. There are no communicaon water supply and telephone services The PHC does not have proper venlaon ii) Area- It should be well lit and venlated with as much No proper sign - age outside the building use of natural light and venlaon as possible. iii) Sign-age- The building should have a prominent board No ramps found- at the facility and no provisions displaying the name of the Centre in the local language. w ere found for the people with disability Fire

iv) Barrier free access environment for easy access to non - buckets were seen but no funconal fire

ambulant, semi-ambulant, visually disabled and elderly exnguishers are placed at the facility.

persons as per guidelines of GOI.

v) Firefighng equipment-fire exnguishers, sand buckets etc. Essenal Medical Care: PHC Desali does not have any fixed OPD hours

i) OPD services: A total of 6 hours of OPD services out of on the basis of the IPHS Guidelines.

which 4 hours in the morning and 2 hours in the

aernoon for six days in a week. Time schedule will vary from state to state. There are no 24 hour emergency services at the ii) 24 hours emergency services: appropriate management PHC. of injuries and accident, First Aid, stching of wounds, incision a nd drainage of abscess, stabiliz aon of the condion of the paent before referral. No proper referral system in place iii) Referral services No beds at the PHC. All the paents visit the iv) In-paent services (6 beds) ANM’s residence for check -ups and medicines

54 Antenatal Care: i) Early registraon of all pregnancies ideally in the first There is no registraon of any pregnancy at the

trimester (before 12th week of pregnancy). PHC ii) Appropriate and prompt referral for cases needing specialist c are Referral services absent iii) Management of pregnancy Induced hypertension including referral No staff to manage pregnancy other than two iv) Minimum 48 hours of stay aer delivery nurses v) Managing labour using Partograph Most deliveries take place at home No system to use Partograph

Postnatal care: i) Ensure post - natal care for 0 & 3rd day at the health Since most deliveries are at home, therefore no

facility both for the mother and new-born. instuonal care is given to the mother and the ii) Iniaon of early breast - feeding within one hour of infant. No visits by the nurse to the mother’s birth. home. iii) Counseling on nutrion, hygiene, contracepon, essenal new born care (As per Guidelines of GOI on The women of the villager reported that no Essenal new-born care) and immunizaon nurse has ever visited their houses for iv) Provision of facilies under Janani Suraksha Yojana pregnancy-counseling (JSY). v) Tracking of missed and le out PNC. None of the women have received any amount

which is mandated under JSY.

There is nobody to carry out any PNC visit and

no tracking of any PNC check-ups New Born Care: i) Facilies for Essenal New Born Care (ENBC) and No facilies at the PHC for new born c are Resuscit aon (Newborn Care Corner in Labour Room/OT. All the immunizaons are not provided to the ii) Full Immunizaon of all infants and children against in fant due to lack of availability of vaccines vaccine preventable diseases as per guidelines of GOI No Vitamin A prophylaxis programme carried iii) Vitamin A prophylaxis to the children as per naonal out guidelines. iv) Prevenon and control of roune childhood diseases, No aempts made to control the menoned

infecons like diarrhoea, pneumonia etc. and anemia preventable infecons and diseases due to lack etc. of staff and facilies

55 v) Management of severe acute malnutrion cases No roune care and check - up of infants is vi) Roune and Emergency care of sick children including carried out in Desali Integrated Management of Neonatal and Childhood Illnesses (IMNCI) strategy and inpaent care. Monitoring of a PHC:

i) Internal Mechanisms: Record maintenance, checking Absence of adequate staff to carry out and supervision monitoring

ii) Medical Audit No audit has taken place ever iii) Death Audit No death audit has taken place iv) Paent Sasfacon Surveys:For both OPD and IPD No survey of this kind has ever been conducted paents. at Desali v) Evaluaon of Complaints and suggesons received There is no suggeson or complain box at the PHC

Recommendaons Immediate acons Follow the minimum standards of Indian Public Health Standards for Primary Health centre in Desali 1) Appoint at least 15 medical staff, including- i) an MBBS doctor who acts as the Medical Officer (MO) in charge of managing ii) 1 pharmacist iii) 1 laboratory technician iv) 3 ANMs v) 2 health assistants vi) 2 mul-skilled workers vii) 1 sanitary worker cum watchman 2) Registraon of pregnant women must begin immediately and all the equipment and facilies required for antenatal care must be provided urgently at Desali PHC 3) Improvement of the infrastructure must begin immediately. The PHC needs to be more venlated and immediately requires facilies for clean water, establishing funconal fire exnguishers. 4) Urgent need to have a regular source of electricity at the PHC Long term acons 1) Effecve monitoring system in place- Regular supervision of the funconalies of the PHC by appointed officials

56 2) Ensure that the evaluaon of the PHC is taking place so as to improve the condions of the facility further on the basis of the monitoring and evaluaon 3) Monthly meengs of the Medical Officers of all the PHC's should be ensured. 4) Monthly meeng of female health supervisors must be ensured. 5) Ensure that the ASHA's and ANM's carry out counseling of women and their home visits regularly. Conclusion Desali is situated in a landslide prone area. It is very difficult to reach the closest bigger cies in order to avail health facilies due to the treacherous terrain. Especially if the paent is in a grave problem or if the women are pregnant, the roads make it worse for them. There is a strong need to have a fully funconal PHC at Desali. The rate of instuonal delivery is very low in the north east states of India including Arunachal Pradesh. To ensure low maternal and infant mortality rate in our country, the health infrastructure needs to improve and the Government needs to act on this immediately. The current condion of PHC is worse because it is not funconal at all. No doctor wants to be staoned at a remote place. But due to this reason the people of Desali are denied their right to avail all the health facilies thereby denied them the right to have a dignified life and also the very basic right to live. Due to the geographical locaon of this PHC, it is a bit more difficult to make all the facilies available but it is not impossible. Not providing with a single facility is a grave violaon of the fundamental rights of the people of Desali. The State Government has to rethink and provide some more incenves to the doctors and other staff for the PHC so that people work there and there is retenon in the facility. Infrastructure exists but it needs to be improved and made user friendly for the people.

57 A CASE OF MATERNAL AND INFANT DEATH IN BIHAR

Background

Maternal Mortality Rao (MMR) of Bihar at 219 per one hundred thousand live births is higher than the naonal average of MMR. It is seen that only about 35% of the pregnant mothers receive three or more than three ANC (Antenatal care) checkups. Only about 7% mother receive full Antenatal checkup and only 23% mothers receive ANC (Antenatal) care services from the Government. The infant mortality rate is 48 % in rural and 41% in urban areas.1 India has realized impressive gains in child survival over the last two decades. However, at the current pace, the country is unlikely to achieve the Millennium Development Goal (MDG) 4 - which aims to reduce Under-Five Mortality (U5MR) by two thirds between 1990 and 2015- unless the related socio-economic; maternal and demographic; and environmental determinants are urgently addressed.2 There are various schemes and policies in India that safeguard mother and child health and guaranteed safe pregnancy. The following case sees a lack in the effecve implementaon of the schemes and the services provided by the Government facilies. It does not meet the standards of the internaonal treaes that India has signed and rafied especially the CEDAW.

In flagrant violaon of all the protocols and the norms formulated under the Naonal Rural Health Mission (Now Naonal Health Mission) through Janani Suraksha Yojana (JSY) and by Janani Shishu Suraksha Yojna (JSSK) a 38 year old pregnant mother Manju Devi was denied her fundamental right to live. She was pregnant and delivered a child at the Government Referral Hospital in Naubatpur, Bihar, known as Community Health Centre, Naubatpur (CHC). The child wasn't crying and the hospital didn't have enough facilies to treat the new born therefore the father was asked to take the child to Patna Medical College Hospital (PMCH). He wasn't provided with all the informaon about the hospital and doctors. No conveyance was provided hence there was a lot of hassle to reach PMCH which was about 20 kms far from the Referral Hospital. By now Manju Devi's husband paid a considerable amount of money in travel and buying of medicines. While going to the hospital, the new born died in transit. Meanwhile, Manju Devi's condion worsened due to excessive bleeding, so she was asked to go to another hospital and even this me no travel arrangements were made and no referral card was provided. A referral hospital like the one at Naubatpur which is a secondary health care facility must have all the facilies. Hassled by the services provided by the Government hospitals, Manju's husband Surendra, decided to take her to a private medical facility called Uday Clinic which was about 50 kilometres away from the referral hospital. It was a small facility but they tried to keep Manju stable for three days. But soon her condion started to deteriorate due to excessive bleeding; therefore Surendra was advised to take Manju to a bigger hospital as she needed specialized care. Surendra had to make arrangements for conveyance again. At this hospital, Surendra was asked to arrange for blood in replacement of the blood that Manju would be provided from the blood bank. Surendra didn't have enough money now. He was asked to donate his blood but later the hospital refused to draw his blood as he was anemic. He couldn't arrange blood from outside. Manju Devi passed away due to excessive loss of blood.

1 hp://www.censusindia.gov.in/vital_stascs/AHSBullens/AHS_Factsheets_2012-13/FACTSHEET-Bihar.pdf 2 hp://unicef.in/PressReleases/374/The-Infant-and-Child-Mortality-India-Report

58 Arcle 21 provides right to dignified life3 and arcle 15(3) provides special provisions for women & children.4 Manju's case clearly shows that these rights have been denied to her. India has rafied internaonal treaes such as CRC (Convenon on the Rights of the Child) and ICESCR (Internaonal Covenant of Economic, Social and Cultural Rights) that covers prevenon of children from negligent treatment and special protecon of mother during a reasonable period of pregnancy. India also rafied CEDAW (Convenon on the Eliminaon of all forms of discriminaon against women).5 JSSK (Janani Shishu Suraksha Karyakram) guarantees to provide free services to pregnant women. In Manju's case, neither free services were provided nor were efforts to keep the mother and child safe made. There is a clear violaon of the fundamental right to live menoned in Arcle 21 of the Constuon of India. Case of Manju Devi Manju Devi, married to Surendra Mochi, belonging to a scheduled caste and holding BPL card died aer delivering a child. They lived in a kutcha house without any electricity connecon or any source of assured water. The husband is a landless farmer who with great difficulty and hard work as a daily wage farm labourer manages to run the house. With the meager wage he earns, the family lived at the brink of extreme poverty and had no savings of any kind. It was always very difficult for the family to meet both ends, leave aside any plan for the family to have a secure future. Living in the small village of Jamalpur of Naubatpur tehsil of Patna district, the family did not have much exposure to the outside world. Naturally, they were not aware of the plethora of schemes that the government has in place for pregnant and lactang mothers for safe motherhood. They always lived under the noon that nothing is available for free and even to avail health care services one needs to shell out a fortune and as a consequence of not receiving the mandated services both Manju Devi and her new born met with completely preventable tragic death. This incident also explains how women from economically marginalized and socially excluded families are denied services and neglected. This incident came to noce of Prayas and SLIC, Patna office during the course of their invesgaons of maternal deaths which took in Patna Medical College & Hospital (PMCH). During the course of the invesgaon, Shri Rameshwar Sharma of Prayas along with Shiv Kumar a local health acvist reached Nabautpur and there they were informed by one of the ASHAs about Manju's death and her new borne belonging to Jamalpur village of that tehsil. Rameshwar Sharma and Shiv Kumar aer knowing it decided to do more fact finding and went to Jamalpur to meet with the family of deceased woman. At Jamalpur they met the husband, Surendra Mochi who had just returned back aer compleng his day's job in a nearby farm. Though the family was in deep shock mourning, but sll the team requested Surendra to narrate the enre incident which led to deaths of Manju and her new borne child. He was also requested by the team to share any documents in his possession related to this episode such as ante-natal registraon card (Mamta card), receipts of medicines purchased, payment for transport, fee to doctors etc.

When the team interacted with Surendra for fact finding, they found out that he wasn't aware of Janani Shishu Suraksha karyakram and Janani Suraksha Yojana. He did not know whether ASHA worker was supposed to visit

3 hp://indiankanoon.org/doc/1199182/ 4 hp://indiankanoon.org/doc/1603957/ 5 hp://nhrc.nic.in/documents/india_raficaon_status.pdf

59 her wife or not when she got pregnant. He wasn't even aware of the MAMTA card that an ANM is supposed to keep updated throughout the gestaon period of a woman. When asked whether Manju Devi received any Take Home Raon from the nearby Aganwari centre, he out rightly refused. He never saw any food brought home by his wife. Scruny of the documents shared by Surendra and the story narrated by him, it emerges that this was the fourth me Manju had become pregnant. The couple already had three daughters aged 13 years, 7 years and 3 years. All the previous deliveries happened at home without any skilled birth aendance. Surendra could not recount if Manju received any ante-natal care during her previous pregnancies in spite that there is an Aganwari centre in the village Jamalpur which has populaon of about 1000. He could not recall that the ASHA of the village also ever visited their house during previous pregnancies. However, when Manju became pregnant at the fourth me, ASHA of the village got pregnancy test done and the ANM of sub- centre Naubatpur prepared her ANC card. She was given a Tetanus Toxoid shot.

It was the fourth me Manju had become pregnant. On the day of the new born's demise, Surendra had already spent a lot of money to avail health services but to his dismay those services proved to be useless because the hospital couldn't save her wife. Imagine the degree of impediment faced by Manju Devi and her husband where a small thing such as blood transfusion was unavailable for them which led to her death. It is unbelievable how such a basic service was denied to them by a hospital such as Nalanda Medical College Hospital. They spent hours travelling from one hospital to another. They were helpless and direconless. Not even a single doctor or nurse assisted them. Their problems kept on increasing with each passing hour. Today Manju Devi is dead. Her eldest daughter had to drop out of school. The husband, Surendra is under a heavy debt. Due to denial of free health services which is a fundamental right of every cizen of our country, families like Manju Devi's become poorer. A family becomes poor in our country not only because they have been poor always, but because they get indebted for life due to spending of large amounts for treatment. Pre-delivery Incidents

Manju Devi, a 38 year old woman, belonged to a BPL (Below Poverty Line) family which resides in Jamalpura Village, Naubatpur Block, Patna District, Bihar. Her husband Surendra Mochi is a landless farm laborer. She belonged to a Scheduled Caste (SC) family. Manju Devi conceived and delivered four mes. Out of these, three are Guidelines for Antenatal Care daughters who are alive and one was a son who died hours aer and Skilled Aendance at Birth birth. The daughters are 15, 12 and 6 years respecvely. She got pregnant for the fourth me on 16th of October, 2014 (Last “Track every pregnancy for conducng Menstrual Period) with an expected date of delivery on 23rd of at least 4 ante natal check-ups including July, 2015. All her previous deliveries were normal. Two out of the first visit for registraon” the three deliveries were instuonal while one took place at home. For the fourth pregnancy she was registered on 4th of February, 2015 and that's when she underwent her first ANC (Antenatal Care) check-up. In total she got two ANC check-ups done and second one was done on 15th of April, 2015. The me she was registered for the ANC, she was already three months pregnant. During the first ANC, a pregnancy test confirmed her pregnancy. At the first ANC checkup her blood pressure and weight were checked. She was also given a vaccinaon for tetanus and she was provided with 30 tablets of iron folic acid each. Her second ANC checkup too place aer two months and similar checkups took place.

60 Post-delivery Incidents

On 20th June 2015 at 11:30 AM Manju Devi started to experience labor pains and was taken to Referral Government Hospital at Naubatpur. In order to reach Naubatpur hospital, her husband called an auto- rickshaw for which they had to pay 300/- rupees. Along with her JSSK Guidelines husband, Manju Devi was also accompanied by her mother, father, two ladies from the neighborhood and the ASHA. Upon “Free transport from home to health reaching the hospital at 12:15 AM, Manju Devi was taken in a instuon” labor room for delivery. Her delivery took place half an hour aer her admission and she delivered a boy. It is noteworthy that nurses in the hospital who conducted delivery took Rupees 500 from her husband. Other than that he also had to spend about Rupees 3000 on buying medicines.

He does not have any receipts of the payments he made. Soon aer delivery, he was told that the newborn had to be taken to another hospital since he was not crying. No JSSK Guidelines transportaon facility was arranged for the child and no referral “Free and zero expense Delivery & card given. All this was done in clear violaon of the Janani Caesarean Secon” Shishu Suraksha Karyakram (JSSK) guidelines which clearly spulate that completely cashless services should be made available to mother and child during pregnancy, delivery, postnatal period and ll the child is one year old. To make maers worse, the family was not even advised the name of the referral facility by the hospital staff nurses and doctors. Surendra Mochi, Manju Devi's husband, arranged a jeep for which he paid Rupees 1500 and rushed the new borne to Patna Medical College Hospital (PMCH). Nonetheless, the child died before they reached the PMCH and all aempts to keep the new borne alive were in vain. When Surendra was on his way to home for the last rites for his recently deceased child he received a call from ASHA about the serious condion of his wife. He le his child's dead body at home in JSSK Guidelines observaon of other family members to perform last rites and rushed to the Referral Hospital. On the same day (20th of June “Free transport between health facilies 2015) around 04:30 PM, he was told to take Manju Devi to in case of referrals” another hospital as her condion was worsening and this hospital couldn't treat her any further. At this me again, any proper referral card, transportaon arrangements or advice were not provided. They were told by the nurse at the hospital that Manju Devi was severely bleeding and she was required to be taken to a bigger and higher hospital for treatment facility. It is to be noted that referral hospital is a secondary health care unit and has to be equipped with specialized care with blood storage unit but Naubatpur referral hospital does not have any facility of that kind.

Aer having a terrible experience at the Govt. hospital where he was treated badly and had to spend a considerable amount of money to buy medicines, he decided to go to a private hospital in Naubatpur called

61 Uday Clinic and Hospital. He took an auto-rickshaw to reach the hospital since the transportaon was not arranged by Naubatpur referral hospital yet again and for which he had to pay Rupees 200. In the private hospital called Uday clinic Manju Devi received immediate treatment but it was a small private hospital and could only manage to keep her stable for some me and aer keeping her for about 3 days, the family was told that her condion was deteriorang and she was bleeding again.

The hospital said that she required specialized care and asked the family to take her to some big hospital that has specialized care. During their stay at Uday private hospital, they had to spend about Rupees 12000 rupees. This expense was borne by Manju's JSSK Guidelines rd parents. At 8:30 AM on 23 of June 2015, Surendra arranged for another “Free Provision of Blood” vehicle to take her to Nalanda Medical College and Hospital.

The vehicle charged 800/- rupees and dropped the family at Phulwari (in the midway) because of heavy traffic. Then Surendra had to arrange another vehicle to go to NMCH which charged them 1000/- rupees and dropped Surendra, Manju and Manju's mother and father to the hospital. Aer 5 long hours, they managed to reach NMCH. At around 01:30 PM, Manju was admied in NMCH where her treatment was started. All the medicines had to be bought from outside for which Surendra had to spend around Rupees 25000. Manju's ultra-sonography was done in NMCH for free. Manju had lost a lot of blood on the way to NMCH and doctors asked her husband Surendra to get the blood. He was asked to donate blood so as to be able to get blood from the blood bank. Despite this shocking and glaringly unconstuonal demand, Surendra agreed to donate blood, but the blood bank staff refused to take his blood cing that he was too anemic to donate blood.

As Manju's parents were old and weak, they were also not in the condion to donate blood. He was asked to get the blood from outside but he ran out of money and was le with nothing. He could not get the blood in me and at 11:35 PM on 23rd of June 2015, Manju was declared dead at NMCH hospital. This is to note that under JSSK the blood could have been given to Manju Devi for free as it is outlined in the JSSK (Janani Shishu Suraksha karyakram) guidelines that a woman is entled to receive cashless delivery services which includes transportaon, medicines, diagnoscs, delivery- normal or cesarean, food during hospital stay and blood transfusion. If the hospital had given Manju blood in me then her life could have been saved. Aer her demise her dead body was taken again from private transportaon to her home for which Surendra had to pay Rupees 1500 rupees, which he had to borrow. Had the referral system been strong, Manju Devi and the newborn could have been saved. JSY (Janani Suraksha Yojana) cheque of Rupees 1400 was given to Surendra Mochi by ASHA (Accredited Social Health Acvist) on 14the of September, 2015. Current Situaon

Surendra had arranged all that money by taking loans on mortgage from the local moneylenders, farmers and banks. Not only were all his savings exhausted but he also had to take Rupees 35,000 from the market and in order to repay these loans, he had to sell his asset (Buffalo for Rupees 25,000) and sll could not pay his enre loan. The other grave repercussion of Manju Devi's demise was that the 15 year old daughter had to drop out school and stay at home to look aer the cale and do the house chores. Surendra is now le with 3 daughters and himself in the family. The family is in a financial crisis now and Surendra is sll toiling hard to repay his debts.

62 Analysis of incident with the context of Guidelines by the Ministry of Health and Rural Management and Internaonal Treaes & Laws

63 64 65 Recommendaons

Immediate acon:

1) Reimburse all the expenses borne by Manju Devi's husband, Surendra Mochi.

2) Provide compensaon to Surendra Mochi.

Long term acon:

1) Sensizaon of doctors and hospital staff towards the pregnant mothers and their orientaon of JSSK (Janani Shihu Suraksha Karyakram)

2) Immediate robust monitoring and evaluaon of the working of the hospitals that are covered under all the policies and schemes mandated by the Government.

3) Availability of facilies like blood storage and specialized care at CHC (Community Health Centre) level. Conclusion The life of Manju Devi and her new-born child could have been saved easily. There has been a failure of the Janani Shishu Suraksha Karyakram at various levels. The family underwent a lot of hassle to arrange for transport, medicines and blood. Due to lack of money, blood wasn't arranged which lead to the death of Manju Devi. NMCH is a First Referral Unit which must provide free blood to paents when required. JSSK clearly states that pregnant women have the right to access free medicines, transport and blood transfusion. The new born died because the referral hospital denied treatment due to lack of facilies. A referral hospital which is secondary health care unit must be equipped with facilies for specialized care and must have blood transfusion opons. The hospital staff did not even give a referral card or any informaon about any doctor or nurse whom they should meet upon reaching another hospital. They did not even provide any transport facility. Due to denial of so many facilies in Government hospital, Surendra was forced to make a decision to go to a private facility. Since it was a small clinic he had to go to a bigger hospital due to connuous deterioraon of Manju's condion. There are no free services at private hospitals. Surendra belongs to low income group. His comes below poverty line and he had to spend more than 45 thousand for geng his wife treated. Today, he is undergoing an immense pressure of financial crisis. Her eldest daughter had to drop out of school. If not given any compensaon to the family of the deceased, the girls may not be able to aain educaon. None of the children will be able to go to school. Another right, Right to Educaon will be violated. The health care system lacks dedicaon, discipline and coordinaon. The staff of hospital mostly has a ruthless behavior. Most paents are unaware of their condion and they blindly believe that the doctors and hospital staff tell them. In Manju's case, no proper guidance or support was provided to Surendra. A lot of me was spent on travelling from one hospital to another. Travel further deteriorated the condion of Manju and her new born child. If at the beginning, the referral hospital provided specialized care to Manju and the new born, they would have been alive today. Even if they were not able to provide such facilies, they could have at least provided ambulance and proper referral card to Manju so that it would have been easier for Surendra to get her wife and new born treated.

66 STERILIZATION FAILURE LEADING TO GRAVE VIOLATIONS OF REPRODUCTIVE RIGHTS IN RAJASTHAN Background India is the first country that launched a Naonal Family Planning Programme in 1952, emphasizing ferlity regulaon for reducing birth rates. With a view to encourage people to adopt permanent method of Family Planning, Government has been implemenng a Centrally Sponsored Scheme since 1981 to compensate the acceptors of sterilizaon for the loss of wages for the day on which he/she aended the medical facility for undergoing sterilizaon. 1 The Reproducve and Child Health Programme provides a basket of choices of contracepve methods, including terminal and spacing methods. Despite the general acceptance of sterilizaon, it is seen that the services being provided currently in the country are not meeng the needs of the people due to various factors, such as the absence of skilled providers, insufficient availability of service centres, etc. As per the Naonal Family Health Survey II esmates, the unmet need for spacing is 8.3 per cent and the unmet need for liming is 7.5 per cent, with wide interstate variaons. Sterilizaon services are largely being provided through a network of public and private sector facilies. In most states, camps are a major source of sterilizaon services. Hence, the camp approach is sll being followed in several states. There has been growing concern about the quality of sterilizaon services being offered, parcularly at the camp facilies. The increase in complicaons, failures, and deaths due to sterilizaons has also resulted in increased ligaon being faced by the providers, which is another barrier in scaling up the sterilizaon services.2 Over a decade, 140 cases of sterilizaon-failure with longest interval of 20 years have been documented out of 80 (57.14%) cases were of minilaparotomy (minilap), 53 (37.86%) laparoscopic tubal ligaon and 5 (3.57%) were lower segment caesarean secon. In 84 cases (60%) sterilizaon were performed in Primary Health Centre (PHC). Only 58 (41.43%) paents reported failure in 1st trimester (more than 12 weeks). 14 cases (10%) were of ectopic pregnancy. There were 25 cases (17.86%) of spontaneous recanalizaon. In 27 cases (19.29%) failure was due to improper surgical procedure and rest 54 (38.57%) have conceived due to tuboperitoneal fistula. Female sterilizaon even though considered as permanent method of contracepon, recanalizaon is possible even 20 years aer procedure. Maximum cases of failure were with minilap and those were performed at PHC. Female sterilizaon or tubal ligaon is the most accepted method of contracepon in India. Almost 5-6 million sterilizaon procedures are performed annually contribung to 98% of all sterilizaons and roughly 62% of all contracepve use. The most popular method used in female sterilizaon in India is the laparoscopic tubal occlusion. Over 85.3% of all persons who have adopted this method of contracepon availed this service from government facilies. Although, tubal sterilizaon is considered a permanent method of ferlity control, pregnancy can occur in 1 in 200, according to internaonal sources. In the 1st year aer tubal sterilizaon, the esmated failure rate is 0.1-0.8% respecvely. The most common cause of failure was tuboperitoneal fistula. Ectopic pregnancies were seen in 10% of cases. Proper counseling of paent is must. There is a need to sck to standards of sterilizaon procedure to prevent future failure.3

1Manual for Family Planning Indemnity Scheme, Implemented through NRH-PIPs, Government of India, Ministry for Health & Family Welfare, 2013 2Quality Assurance Manual for Sterilizaon Services’ Research Studies & Standards Division Ministry of Health and Family Welfare, Government of India, October 2006 3hp://www.ncbi.nlm.nih.gov/pmc/arcles/PMC4137647/

67 The Family Planning Insurance Scheme is one of the iniaves launched under direcon from the Supreme Court, with effect from 29th of November, 2005. In the year 2013, this scheme was modified as the Family Planning Indemnity Scheme which was effecve from 1st of April, 2013. There might be cases not covered by the Family Planning Insurance Scheme, like those cases of sterilizaon operaons which were conducted before coming into force of Insurance Scheme, that is, prior to 29th of November, 2005 and cases not covered under the Naonal Protocol or the cases already pending in courts etc. The liability of such cases is met by the state government or union territory administraon.4 Geeta's story Gita Bai, a 37 years old woman, lives in a village called Nannana which is in Bhadesar tehsil in the district of Chiaurgarh, Rajasthan. She lives with her husband, Satya Narayan Sain and five children- one girl and four boys, Jyo being the eldest who is 16 years old. Younger to Jyo is Vijay who is 14 years old and then comes Rahul who is 11 years old. For them it is a huge burden to raise their kids due to very low income. Right from bearing the expenses of their kids' school to buying grains and vegetables, Geeta and Satya Narayan work day in and day out. There have been mes when they both have stayed hungry and fed their children. Every day is a struggle for them to earn enough that would last a week. They belong to a scheduled tribe community. They never planned to have five children. Aer their third child they decided to adopt some contracepve method. Due to sterilizaon failure, Geeta Bai got pregnant. Her pregnancy was detected very late because of which Geeta Bai and her husband were advised not to terminate the pregnancy. The two boys are Jeevan Lal and Vishnu who are 9 years old and 7 years old respecvely. Geeta Bai and Satya Narain belong to the BPL (Below Poverty Line) group. They have managed to renovate their “katcha” house but it is sll a very small house. The five members live in the same room and there is not much space for movement. They haven't been able to gather any assets because of lack of resources. They do not have a funconal toilet in the house so they go out in the fields for excreon. There is a small area that is used for bathing purposes which is at a corner of the house shielded by a tethered bed sheet. Geeta's husband owns a bit of a land where he does some farming but it doesn't provide him with any good profit. Mostly he has to bear losses. He is unable to sell the land to anyone for a good price. He also has a make-shi barber shop on the main road. He makes a meagre amount of money every month. Geeta is a cook in a school. She earns around Rupees 1000 every month. Five of their children go to government schools. The house is their own therefore they don't have to pay any extra amount as rent. They do not have an assured source of water at their house. In fact, no one in the village of Nannana have a regular source of water. Geeta brings water from a nearby well and hand pump. The closest developed place is CEDAW & ICPD states that Nimbaheda (a block in Chiaurgarh) which is about 30 kms away “Men and women have a right of to from Nannana. The whole village doesn't have a proper source decide freely and responsibly on the of electricity. To avail health facilies the people of Nannana have to go to Nimbaheda. For vising Nimaheda once, Geeta and number and spacing of their children Satya Narayan have to shell out a huge amount because for them and to have access to the informaon, the cket price of the bus is a lot. Naturally, they avoid vising educaon and means to enable them to any hospital unless it is an emergency case. exercise these rights.

4Manual for Family Planning Indemnity Scheme, Implemented through NRH-PIPs, Government of India, Ministry for Health & Family Welfare, 2013

68 Sterilizaon failure

Geeta bai and Satya Natayan decided to opt for a permanent contracepve method aer having three children. Their financial condion is very low therefore they decided not to have any more children. For this purpose they approached an ANM (Accrediated Nurse and Auxiliary Midwife) of their village. She took Geeta and her husband to the Nimbahera CHC where sterilizaon camp was held. On 24th of July, 2004 Geeta underwent a process of tubectomy which is a permanent method of sterilizaon. Two years later she became pregnant. She learned about it only aer five months of her pregnancy. It was too late to medically terminate the pregnancy. Geeta had to give birth to a child. She didn't consider any other contracepon method aer this delivery. Geeta reported that they were not completely out of this shock when they learned that Geeta was pregnant again. This me it was in the year 2008. She learned about her pregnancy aer 4-5 months. Again she was advised not to get medical terminaon done. Geeta gave birth to a child again. Aer this, Satya Narayan decided to get his sterilizaon done this me. There was no incidence of sterilizaon failure aer that. It has been nine years since their fourth child was born and Geeta and Satya Narayan haven't received any compensaon from the health facility due to sterilizaon failure. They have filed a writ peon in the court but there has been no relief yet. Understanding Sterilizaon failure in context with the schemes and guidelines of the Government and Internaonal Treaes

Applicability of the Family Planning Indemnity Scheme (FPIS): w.e.f 1st of April, 2013

The Family Planning Indemnity Scheme is uniformly applicable for all States or Union Territories (UTs). With effect, 01.04.2013, it has been decided that States/UTs would process and make payment of claims to accepters of sterilizaon in the event of death/failures/complicaons /Indemnity cover to doctors/health facilies. It is envisaged that States/UTs would make suitable budget provisions for implementaon of the scheme through their respecve State/UT Program Implementaon Plans (PIPs) under the Naonal Rural Health Mission (NRHM) and the scheme may be renamed “Family Planning Indemnity Scheme”. It will be the responsibility of the District Official designated for the scheme by the State Government to ensure mely filing and processing, including payment of eligible claims. With effect from 1st April 2013, liability in respect of such cases would be met by the State Government/UT Administraon from funds released by Government of India, under the Naonal Rural Health Mission (NRHM), through State Programme Implementaon Plans (PIPs).

Selement Of Cases Not Covered Under The Family Planning Insurance Scheme (FPIS):

There might be cases not covered by the Family Planning Insurance Scheme, viz. cases of sterilizaon operaons conducted before coming into force of Insurance Scheme, i.e. prior to 29th November,2005,cases not covered under the Naonal Protocol or the cases already pending in courts etc. Liability in respect of such cases would be met by the State Government/UT Administraon from the Miscellaneous Purpose Conngency Fund created in respecve State/UT by apporoning some amount from the grants released to them by the Union Government under the Scheme of Compensaon for loss of wages for acceptors of Sterilizaon/IUD inserons or under the Scheme of Flexible Funding for State Programme Implementaon Plans (PIPs).

69 Family Planning Insurance Scheme W.E.F. 29th November, 2005: Under the exisng Government Scheme no compensaon was payable for Failure of Sterilizaon, and no Indemnity cover was provided to Doctors/Health Facilies providing professional services for conducng sterilizaon procedures etc. There was a great demand in the States for Indemnity Insurance cover to Doctors/Health Facilies, since many Govt. Doctors are currently facing ligaon due to claims of clients for compensaon due to failure of sterilizaon. This has led to reluctance among the Doctors/Health Facilies to conduct Sterilizaon operaons.

With a view to do away with the complicated process of payment of ex-graa to the acceptors of Sterilizaon for treatment of post-operave Complicaons, Failure of Sterilizaon or Death aributable to the procedure of sterilizaon, the Family Planning Insurance Scheme(FPIS) was introduced w.e.f 29th November, 2005 with Oriental Insurance Company, to take care of the cases of Failure of Sterilizaon, Medical Complicaons or Death resulng from Sterilizaon, and also provide Indemnity Cover to the Doctor/Health Facility performing Sterilizaon procedure, as follows:

a) Death due to Sterilizaon in hospital: Rs. 1,00,000/ -

b) Death due to Sterilizaon within 30 days of discharge from hospital Rs.30,000/ - c) Failure of Sterilizaon (including first instance of concepon aer Rs.20,000/ - sterilizaon) d) Expenses for treatment of Medical Complicaons due to Rs.20,000/ -* sterilizaon operaon (within 60 days of operaons (*To be reimbursed on the basis of actual expenditure incurred, not exceeding Rs.20, 000.)

Revised Scheme W.E.F. 1st April, 2013: This scheme with modificaon in procedure w.e.f. 01-04-13 to 31st of March, 2014, would be a part of State Programme Implementaon Plans (PIPs) under NRHM and renamed as Family Planning Indemnity Scheme. The available benefits are as under:

Secon Coverage Limits

IA Death following sterilizaon (inclusive of death during process of Rs. 2 lakhs sterilizaon operaon) in hospital or within 7 days from the date of discharge from the hospital. IB Death following sterilizaon within 8 - 30 days from the date of Rs. 50,000 discharge from the hospital. IC Failure of Sterilizaon Rs. 30, 000

ID Cost of treatment in hospital and up to 60 days arising out of Actual not exceeding Rs complicaon following ste rilizaon operaon (inclusive of complicaon 25,000/ - during process of sterilizaon operaon) from the date of discharge. II Indemnity per Doctor/Health Facilies but not more than 4 in a year. Upto Rs. 2 lakhs per

claim

70 Eligible beneficiaries/ Doctors/ Health Services Providers:

· All persons undergoing sterilizaon operaons and signed the Consent Form are covered under Secon IA, IB, IC and ID

· All the Doctors/Health Facilies including Doctors/Health Facilies of Central, State, Local-Self Governments, other Public Sectors and all the Accredited Doctors/Health Facilies of Non-Government and Private Sectors rendering Family Planning Services and conducng such operaons shall be indemnified against the claims arising on them out of failure of sterilizaon, death or medical complicaon resulng there from up to a maximum amount of Rs. 2 lakh per doctor/health facility per case, maximum up to 4 cases per doctor/health facility per year . The cover would also include the legal costs and actual modality of defending the prosecuted doctor/health facility in Court, which would be borne by the respecve State/UTs within the limits of Secon II. Geeta Bai delivered two children aer the sterilizaon failure. According to the Family Indemnity Scheme, she is entled to receive a sum of Rupees 30,000. Her sterilizaon failure took place in the year 2006. Nine years have passed and Geeta bai has not received any compensaon. They filed a representaon to the Government authories but there was no response. Therefore they are in the process of filing a writ peon in the high court of Rajasthan. The Union of India Guidelines on Sterilizaon It specifically state that counseling should entail the process of helping clients make informed and voluntary decisions about ferlity. The Guidelines mandate that women should be counseled mulple mes by mulple services providers including: • Clients must be informed of all the available methods of family planning and should be made aware that for all praccal purposes this operaon is a permanent one.1.4.1.2. Clients must make an informed decision for sterilizaon voluntarily • Clients must be counseled whenever required in the language that they understand • Clients should be made to understand what will happen before, during, and aer the surgery, its side effects, and potenal complicaons • The following features of the sterilizaon procedure must be explained to the client: a) It is a permanent procedure for prevenng reversal involves major surgery and that its success cannot be guaranteed b) Future pregnancies- It is a surgical procedure that has a possibility of complicaons, including failure, requiring further management c) It does not affect sexual pleasure, ability, or performance. It will not affect the client's strength or her ability to perform normal day-to-day funcons. Sterilizaon does not protect against RTIs, STIs, or HIV/AIDS • Clients must be encouraged to ask quesons to clarify their doubts, if any • Clients must be told that they have the opon of deciding against the procedure at any me without being denied their rights to other reproducve health services

71 Geeta Bai did not receive any counselling before her sterilizaon procedure by the ANM. She was taken to a sterilizaon camp and was registered for the procedure. Even the doctors did not give her any counseling before the procedure. Aer her operaon she was not given any advice. This case highlights a lack of proper implementaon of all the guidelines meant for sterilizaon. Internaonal Conference on Populaon and Development (1994, Cairo) This conference held in Cairo states that “Everyone has the right to the enjoyment of the highest aainable standard of physical and mental health. States should take all appropriate measures to ensure on a basis of equality of men and women, universal access to health-care services, which includes family planning reproducve health and sexual health. Reproducve health-care programs should provide the widest range of services without any form of coercion. All couples and individuals have the basic right to decide freely and responsibly the number of spacing of their children and to have the informaon, educaon, and means to do so.” The state failed to provide proper counselling on family planning opons, actual services, with a failed sterilizaon operaon robbing Geeta of choice and bodily integrity. Conclusion Geeta Bai and Satya Narayan are struggling to provide for their family. Geeta earns a meagre salary at the school where she cooks. Satya Narayan has a small barber shop and he does not make a lot of money himself. They are praccally living hand to mouth. They do not have any savings presently. Geeta and her husband decided to opt for a permanent contracepon method because they didn't want any more children. Raising three children was a huge burden on them already. Aer the failure, they had two more children and this has increased their financial burden. There has been a grave violaon of her rights to life, health, and dignity resulng from failure to implement Standard Operang Procedures for Sterilizaon. This could have been prevented had there been proper counseling of Geeta. She was not aware of the fact that there are some chances of sterilizaon failure, although the chances are as low as 1%. This indicates that there has been negligence on the part of the doctors who may not have performed the procedure accurately and who also failed to provide Geeta with proper counseling regarding sterilizaon.

72 MATERNAL DEATH CASE IN CACHAR, ASSAM Background Maternal mortality and morbidity represent one of the global issues of concern in developing countries. Every year, in India, 28 million pregnancies take place with 67,000 maternal deaths, one million women le with chronic ill health, and one million neonatal deaths.1 To combat the increasing maternal mortality rate (MMR), leaders from around the world adopted the Millennium Development Goals (MDGs with the objecve of reducing maternal death, by establishing universal healthcare access throughout the reproducve life of a woman.2 The WHO defines maternal death as, “the death of a woman while pregnant or within 42 days of terminaon of pregnancy, irrespecve of the duraon and site of the pregnancy, from any cause related to or aggravated by the pregnancy or its management, but not from accidental or incidental causes.” Further, WHO reported that over 90% of all maternal deaths are preventable where women receive access to basic antenatal care, skilled delivery assistance, and post-partum services. When governments fail to provide adequate maternal health care, they violate women's rights to survive pregnancy, to health, to dignity, and to life. India accounts for large number of maternal deaths in the world with 17 per cent or nearly 50,000 of the 2.89 lakh women who died as a result of complicaons due to pregnancy or childbearing in 2013.3 WHO reported that India's MMR has reduced from 560 in 1990 to 178 in 2010-2012, but the country is unlikely to meet its MDG target of 103.4 Many experts agree that the drop in maternal mortality cannot be aributed to any government intervenon, but in fact is linked to a reducon in deliveries. Assam recorded highest maternal mortality rate in India at 328 (Sample Registraon Survey 2010-2012) as compared to 178 for the rest of India. There are many reasons for Assam's high rate of maternal death like child marriage, lack of awareness on health care, non-implementaon of government maternal benefit schemes, lack of road connecvity to the nearest health centers, and poor antenatal care. In this background, Social Acvists and Lawyers from the Human Rights Law Network (HRLN), Barak Human Rights Protecon Commiee, and Women in Governance-Assam conducted a fact-finding in North Cachar Hills, Assam with the objecve of finding out gaps in health services availability and in accessing health services in the district. Causes of Maternal death The social, economic and instuonal failure leads to increasing rate of maternal mortality and morbidity. a) Economic and Social Status: The guidelines on Maternal and New Born Health Care report, 'Women in poor households have reduced access to nutrion, rest, health educaon and healthcare– all of which are essenal for safe pregnancy. Such women are also likely to be more mal-nourished and anaemic with greater risk of dying as a result of haemorrhage.5

1Operaonal Guidelines on Maternal and New Born Health, Naonal Rural Health Mission (NRHM) 2Ahankari Anand and Marufu Takawira, India’s progress towards the 5th Millennium Development Goal: A crical review, Indian Journal of Maternal and Child Health, Vol 16 (2), 2014 3India has highest number of maternal death; Indian Express dated May 7, 2014 4lbid 5Operaonal Guidelines on Maternal and New Born Health, NRHM

73 b) Early Marriage and Childbearing: 6Women who get pregnant young tend to develop more complicaons during pregnancy and delivery and are more likely to die. Neonatal mortality is also higher among young women. Risk of complicaons is also higher among women whose pregnancies are not adequately spaced, and where there is frequent childbearing. c) Instuonal Failure: The state violates women's right to health when it fails to ensure available and acceptable health facilies. Through our fact finding we found out that there is a lack of ambulance services, lack of specialist and doctors at CHCs and district hospital, and lack of medicines at PHCs/CHCs/District hospital. Methodology A team of Lawyers and Social Acvists from Human Rights Law Network (HRLN), wing Assam and Barak Human Rights Protecon Commiee conducted a fact-finding on 6th July, 2015. The fact-finding team interviewed ASHA/Anganwadi workers and the vicm's family members. This fact finding report is based on both primary and secondary source of informaon. Interviews were used as the primary method to collect informaon in the fact finding visit. Apart from the primary data, we also analysed reports (DLHS3, Annual Health Survey and Health Management Informaon System), literature as secondary sources of informaon. Understanding Safe Motherhood in Assam: Rights Based Approach “Motherhood and childhood are entitled to special care and assistance.”- Article 25 (2) Universal Declaration of Human Rights The right to survive pregnancy and childbirth is a basic human right. Under internaonal law, India has a duty to ensure that women and infants do not experience death or morbidity from wholly preventable causes. This duty arises from Arcle 21 of the Constuon of India as well as mulple internaonal convenons to which India is a party, and which establish the right to health, the right to reproducve autonomy, and the right to be free from degrading treatment. Relevant convenons include the Internaonal Covenant on Civil and Polical Rights (ICCPR), the Internaonal Covenant on Economic Social and Cultural Rights (ICESCR), the Convenon on the Eliminaon of All Forms of Discriminaon Against Women (CEDAW), and the Convenon on the Rights of the Child (CRC). In this secon we will analyse the right to maternal health under the purview of various internaonal, naonal, and government intervenon in order to improve maternal health situaon in the country under four subsecon: • Internaonal laws/convenon • Constuonal Laws • Supreme and High Court cases related to reproducve rights • Government intervenon in providing safe motherhood Internaonal Laws and Convenons Specifically, Arcle 12(1) of CEDAW mandates the Union of India to eliminate discriminaon against women in health care to ensure women's equal access to health care services. The Commiee for the Eliminaon of all

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74 forms of Discriminaon Against Women's General Recommendaon 24 elaborates States Pares' obligaon to “take appropriate legislave, judicial, administrave, budgetary, economic and other measures to the maximum extent of their available resources to ensure that women realize their rights to health care. The Union of India has a duty to guarantee these fundamental rights to women throughout India. In fact, the Commiee for CEDAW has specifically asked India “to priorize decreasing maternal mortality rates by establishing adequate obstetric delivery services and ensuring women access to health services.” Recognizing the right to delivery services and maternal health, the United Naons based Commiee on the Eliminaon of Discriminaon against Women (CEDAW Commiee) held the State of Brazil responsible for inadequate and poor quality maternal health care in Alyne da Silva Pimentel Teixeira v. Brazil. During her sixth month of pregnancy, Alyne da Silva Pimentel died because her local health care centre failed to properly diagnose her complicaons. Alyne da Silva Pimentel's injuries were the direct result of delayed and inadequate maternal health care. In holding the Government of Brazil responsible for human rights violaons, the CEDAW Commiee concluded: The authors' claims that the lack of access to quality medical care during delivery is a systemac problem in Brazil, especially with regard to the way human resources are managed in the Brazilian health system. The Commiee also takes note of the argument of the State party that specific medical care was not denied because of an absence of public policies and measures within the State party, as there are a number of policies in place to address the specific needs of women. The Commiee...notes that the policies of the State party must be acon-and result oriented as well as adequately funded. Furthermore, the policy must ensure that there are strong and focused bodies within the execuve branch to implement such policies. The lack of appropriate maternal health services in the State party that clearly fails to meet the specific, disncve health needs and interests of women...constutes a violaon of arcle 12 (right to health). Furthermore, the lack of appropriate maternal health services has a differenal impact on the right to life of women. Under its CEDAW obligaons, the Union of India has a duty to ensure the fundamental right to health. Under its legal obligaons as a signatory to the ICESCR, India must implement measures to improve maternal health and sexual and reproducve health services. The Commiee for the ICESCR has clearly announced that failure to reduce maternal mortality and morbidity is a violaon of the right to health. While the ICESCR provides for the progressive realizaon of the right to health, it also imposes certain 'core obligaons' that are to take immediate effect. The provision of maternal health care has been deemed as the core obligaon. Accordingly, India has an immediate obligaon to provide pre and post-natal care, access to health facilies, goods and services without discriminaon especially for vulnerable or marginalized groups. The United Naons Special Rapporteur on the Right to Health asked why India's MMR and maternal morbidity rates soar above its comparators. His invesgaon found that woefully inadequate funding from the Centre Government contributed to poor health indicators in India. More importantly, the Special Rapporteur found that underulizaon of these meager funds perpetuates inadequate maternal health care in India. Constuonal Guarantees Addionally, the Constuon of India protects women's right to survive pregnancy. Arcle 21 guarantees the right to life and personal liberty. The Hon'ble Supreme Court has interpreted Arcle 21 to include numerous

75 fundamental rights already protected under internaonal law, including a fundamental right to health (both physical and mental); the right to live with dignity; and the right to be free from torture and cruel, inhuman, or degrading treatment. Arcles 14, 15, and 38 of the Constuon of India provide addional guarantees. Arcle 14 guarantees equality before the law, and the Hon'ble Supreme Court has described gender equality as one of the “most precious Fundamental Rights guaranteed by the Constuon of India.” Arcle 15 prohibits discriminaon on the grounds of religion, race, caste, sex or place of birth. While the burdens of pregnancy and childbirth are inequitably borne by women, the ability to reproduce should not increase women's chances of death, disability, or illness. There is no similar cause of death for young men in India. Finally, Arcle 38 guarantees access to medical services regardless of status. Supreme Court and High Court orders on reproducve rights The Supreme Court of India and state High Courts have issued ground-breaking orders to ensure women's reproducve rights, including the right to survive pregnancy: • In Francis Coralie Mullin v. Union Territory of Delhi &Ors., [1981 SCR (2) 6], the Supreme Court held that the right to live with dignity and protecon against torture and cruel, inhuman or degrading treatment are implicit in Arcle 21 of the Indian Constuon. • In Pt. Parmanand Katara v. Union of India &Ors.,[1989 SCR (3) 997], the Supreme Court held that Arcle 21 of the Constuon casts the obligaon on the state to preserve life. • In Consumer Educaon and Research Centre v. Union of India, [1995 SCC (3) 43], the Supreme Court held that Arcle 21 of the Constuon of India includes a fundamental right to health, and that this right is a “most imperave constuonal goal.” • In Paschim Banga Khet Mazdoor Samity v. State of West Bengal, [1996 SCC (4) 37], the Supreme Court affirmed that providing “adequate medical facilies for the people is an essenal part” of the government's obligaon to “safeguard the right to life of every person.” In PUCL v. Union of India,[1996 SCC], the Supreme Court held that all pregnant women should be paid Rs. 500 under NMBS at 8–12 weeks prior to delivery for their first two births, irrespecve of the place of delivery and age. • In Laxmi Mandal v. Deen Dayal Harinagar Hospital &Ors., [W.P. (C) 8853/2008], the Delhi High Court held that an inalienable component of the right to life is “the right to health, which would include the right to access government health facilies and receive a minimum standard of care. In parcular this would include the enforcement of the reproducve rights of the mother.” • In Sandesh Bansal vs. Union of India &Ors.,[W.P. (C) 9061/2008], the Indore High Court concluded that mely health care is of the essence for pregnant women to protect their fundamental rights to health and life as guaranteed under Arcle 21 of the Constuon of India. The Court held, "…We observe from the material on record that there is shortage not only of the infrastructure but of the man power also which has adversely affected the effecve implementaon of the [Naonal Rural Health Mission] which in turn is cosng the life of mothers in the course of mothering. It be remembered that the inability of women to survive pregnancy and child birth violates her fundamental rights as guaranteed under Arcle 21 of the Constuon of India. And it is primary duty of the government to ensure that every woman survives pregnancy and child birth, for that, the State of Madhya Pradesh is under obligaon to secure their life.”

76 Government Intervenons to reduce MMR Apart from internaonal and Constuonal guarantees, government intervened with the objecve to reduce MMR in the country. In this regard, various safe motherhood and maternal benefits were introduced. The various central and state schemes are briefly discussed below: a) Naonal Health Mission: In 2013, the Centre Government launched the Naonal Health Mission (NHM) as an umbrella program with two main prongs: the Naonal Rural Health Mission (NRHM), first launched in 2005, and the Naonal Urban Health Mission (NUHM). The purpose of these schemes is to improve health infrastructure and health outcomes in India's rural and urban areas. A major focus of the NRHM is improving maternal and infant health, which is revealed in the NRHM Service Guarantees. In addion to the Service Guarantees, the NRHM houses numerous individual benefit schemes with a more targeted focus. Individual schemes that focus on improving maternal and infant health services are discussed below. They include the Janani Suraskha Yojana (JSY) and the Janani Shishu Surakasha Karyakram (JSSK). b) Janani Suraksha Yojana (JSY): Since its implementaon in 2005, the JSY scheme has aimed to reduce maternal and neonatal mortality by providing women with condional cash assistance for registering their pregnancies and choosing instuonal delivery. All women are eligible for JSY benefits, regardless of their age or number of children. As an LPS, Assam must provide JSY benefits of Rs. 1400 for instuonal deliveries in rural areas, Rs. 1000 in urban areas, Rs. 1500 for Caesarean secon paents, and Rs. 500 (from NMBS funds) for home deliveries conducted by skilled birth aendants. Although women who choose to deliver in private health facilies must bear the costs themselves, they are sll eligible to receive JSY benefits for an instuonal delivery. To receive JSY benefits, women must present a JSY card and a referral slip from an Accredited Social Health Acvist (ASHA), Auxiliary Nurse Midwife (ANM), or Medical Officer (MO). JSY guidelines specify that a woman's state of residency (not the state in which she delivers) determines the amount of the JSY cash benefit. Therefore, even though many women in India return to their mother's home to deliver, which may be located in another state, these women must be given a JSY payment at the rate of their own home state.

JSY BENEFIT FOR INSTITUTIONAL DELIVERIES (in Rupees) Rural Urban Category of Assistance to Assistance to Total Assistance Assistance to Total St ates mother ASHA Mother ASHA LPS* 1400 600 2000 1000 400 1400 HPS** 700 600 1300 600 400 1000 * Low Performing States (LPS) include Assam, Bihar, Chhasgarh, Jammu & Kashmir, Jharkhand, Madhya Pradesh, Odisha, Rajasthan, Uar Pradesh, and Uaranchal. ** High Performing States (HPS) include all states that are not LPS.

77 c) Janani Shishu Surakasha Karyakram (JSSK): Through the NHM, the government also coordinates the JSSK scheme, which the Government launched in June 2011 as a means of eliminang out-of-pocket expenses incurred by pregnant women and sick newborns, which are “without doubt, a major barrier” for pregnant women and children, many of whom “die on account of poor access to health facilies.” Therefore, the JSSK scheme provides that pregnant women seeking instuonal delivery and sick newborns unl 30 days aer birth are entled to absolutely free care in all government health facilies. JSSK services are available to all women who deliver in government health facilies, regardless of age, number of children, or economic status. These free JSSK services include delivery (including Caesarean secon), medicines, consumables, essenal diagnoscs, blood transfusions, nutrious meals (up to 3 days for normal delivery and 7 days for Caesarean secon), free transportaon to and from the facility (and between facilies in cases of referral), and exempon from all user charges. The JSSK scheme provides essenally the same free services to sick newborns that are available to pregnant women. Assam Public Health Bill, 2010 Assam Public Health Bill was introduced in 2010 to provide access to health care services and ensure that there shall not be any denial of health care directly or indirectly, public or private, including for profit and not for profit service providers, by laying down minimum standards and appropriate regulatory mechanism. To lay down specific standards and norms for safety and quality assurance of all aspects of health care including health care services and processes, treatments protocols, infrastructure, equipment, drugs, health care provider, within the Government, private and other non-governmental sectors. Mamoni Mamoni is a state sponsored scheme to provide cash assistance to pregnant women for nutrional support @Rs. 1000/- in two installments. “Mamoni” is a scheme of the Government of Assam that encourages pregnant women to undergo at least 3 ante-natal checkups which idenfy danger signs during pregnancy (needing treatment) and offer proper medical care. Under this scheme, at the me of registraon, every pregnant woman receives a booklet on ps on safe motherhood and newborn care tled 'Mamoni' Case Study of Maternal Death Name: Farida Begum Husband's Name: Rajauddin Chowdhary Village: Banskandi Madrasa Kinare, Cachar Farida Begum, aged 21 years died birth to her baby at Baskandi PHC. She lived in Banskandi, Cachar in Assam. Farida was married to Rajauddin Chowdhary for almost a year and it was her first pregnancy. She was registered for JSY in Baskandi PHC and received two ANC checkups. During her ANC care she received 100 iron tablets and a TT injecon. On 24th of Jun, around 3:00 PM, Farida's labour pain started. Her husband called the ASHA worker and asked her to accompany the family to Banskandi PHC for Farida's delivery. The PHC is 2 kms away from their residence. The ASHA worker refused to accompany them and asked them to wait ll morning. Later, her

78 husband called up for an ambulance service but there was no ambulance on duty that day. In the absence of ambulance services and lack of transport facilitates she had no other opon but to wait through the night in her labour pain. Next morning around 6 a.m. when her health condion further deteriorated, Tombi Bibi (mother in law), Modoloi Bibi (sister in law), and her father in-law helped her to travel to Banskandi PH in a private car. When they reached the health centre they found out that there was no doctor or nurse available. The only staff person on duty was the sweeper. They learned that the doctor and nurses reported for duty around 10 AM. The GNM (Ayesha Begum) checked Farida. Later, a male doctor who is in charge of the PHC came and examined her, but he suggested that they should wait for delivery. The family requested the doctor to check Farida for Farida Begum's JSY Card the second me but he refused. Aer about an hour, she delivered a baby girl. It was a normal delivery with the assistance of GNM. The hospital performed an episiotomy- or a cut of the skin between the vagina and anus. Although the medical community widely pracces this procedure, it is rarely done in developed countries. Immediately aer the delivery, the GNM asked the vicm to move out from the delivery bed and move to another bed without giving her any stretcher because another paent was waing to deliver. The PHC has 5 beds out of which 3 beds are provided by the government and 2 beds are donated by the villagers. When Farida was repeatedly asked to leave the bed, she tried to get up on her own but fell down on the floor and fainted. The GNM called the family members waing outside of the labour room. When the family entered the delivery room, the GNM asked them to shi Farida to another bed but again did not provide a stretcher. Aer repeated requests, the hospital provided a stretcher and Farida's Referral Slip Farida was shied to another bed. She wanted to urinate but she was not provided with a bedpan and was asked to go to toilet on foot. She tried to walk and again fell down. Thus her condion deteriorated with excessive bleeding aer she fainted again for the second me. As a result of excessive bleeding, the Medical Officer (MO) of the PHC referred Farida to Silchar Medical College and Hospital (SMCH) at 4:00 PM. The PHC refused to provide a vehicle for referral since the ambulance was being used for a polio vaccinaon camp instead. When the Hospital authority called 102 for ambulance, they were informed that 102 ambulance have declared a strike. In the meanme, the ASHA worker arrived and argued with hospital authories for a vehicle. Eventually, the doctor provided the family with money to travel by private vehicle

Farida's Five Month Old Daughter to Emanuel Rural Hospital. Throughout this me, Farida

79 connued to bleed. Emanual Rural Hospital is a nursing home run by Chrisan Missionaries. The family members decided to go to this hospital because of road condions and proximity to the CHC. On the contrary, SMCH is nearly 27 kms away and almost impossible to reach because of the terrible roads. The family would need over an hour to reach SMCH. They reached the hospital at 5:30 p.m. She was admied but on 25th of February, at around 4:30 a.m. Farida's condion deteriorated further and she was ulmately referred to SMCH. They had to hire a private car and took her to SMCH. At SMCH, Farida received 7 units of blood. Her husband had to arrange for blood at the cost of Rupees 3300 per unit. In total, he paid Rs 23,100/- for blood. He took loans from his relaves to cover the expenses. The hospital connued to observe Farida, but she died on 28th of February at 6:15 P.M. According to family members, and Dr. Lemina, Medical Superintendent of Emanuel Rural Hospital 'the negligence of the doctor and nurse of the PHC at the inial level is the main cause of death.' Further, the family informed the team that the baby was not given any vaccine aer the birth neither at the PHC nor at SMCH. Now, Farida's mother-in-law takes care of the five month old baby. The SMCH, Medical Cerficate lists the immediate cause of death as cardio respiratory arrest and the antecedent cause of her death is sepcemia - commonly defined as infecon in the blood. One of the common causes of Sepcemia is prolonged or obstructed labor, vaginal or cesarean delivery, and unhygienic medical condions. 7 Socio-Economic Condion Thus, from the above case study it is clear that state failed to provide basic health care services. Farida, was born to landless laborer family in Silchar district of Assam. She never went to school and at the age of 20 years, she was married to Rajauddin Chowdhary. Rajauddin migrated to Mizoram in search of work as he didn't have any source of income and no land in Silchar. In Mizoram, he painted cars for a living and earned Rupees 5000 per month. He works for almost 12 hours a day. Rajauddin had to take a leave from his work for Farida and he was not paid during those days. It is to be noted that since he was contractual laborer, there was no fixed income for his family. Rajauddin's monthly salary supported a family of four. Farida was a housewife and her husband is the only bread winner of the family. Farida and Rajauddin struggled to survive on this meager income – forcing Farida to forego adequate nutrion during her pregnancy. Observaons The team idenfied a wide range of violaon of Fundamental Rights in Farida's case: Right to safe pregnancy and to survive delivery In Sandesh Bansal vs Union of India (PIL) W.P. 9061/2008, the High Court of Madhya Pradesh recognized that a woman's right to survive pregnancy and childbirth is a fundamental right protected under Arcle 21 of the Indian Constuon. In Laxmi Mandal vs. Deen Dayal Harinagar Hospital & Ors., [W.P. (C) 8853/2008], the Delhi High Court held that an inalienable component of the right to life is “the right to health, which would include the right to access government health facilies and receive a minimum standard of care. In parcular this would include the enforcement of the reproducve rights of the mother.”

7 Sepsis Alliance, available at hp://www.sepsisalliance.org/about/

80 In case of Farida Begum, the state failed to provide the minimum health services that would have prevented her death. In the absence of specialists and gynecologists, she faced two deadly delays during referral (from the PHC to Emanuel Rural Hospital and further to SMCH). Also, due to lack of ambulance services there were inial delays. Right to be treated with dignity Arcle 12 of Internaonal Covenant of Economic, Social and Cultural Rights (ICESCR) states that Covenant recognises the right of everyone to "the enjoyment of the highest aainable standard of physical and mental health". "Health" is understood not just as a right to be healthy, but as a right to control one's own health and body (including reproducon), and be free from interference such as torture or medical experimentaon.' Farida was forced to leave the bed without any assistance and again forced to leave the bed to urinate. This is a clear violaon of ICESCR which Ind ia is signatory. It also violates the guideline given in, 'Criteria for Accreditaon of 24 Hours Comprehensive Emergency Obstetric Care' issued by NHM, which says that- All mothers aer having normal deliveries should be observed in the labour room for at least two hours. Before transferring the mothers to the postnatal ward pulse, BP, firmness of the uterus and amount of vaginal bleeding should be checked. Entlement to adequate medical facilies: In Paschim Banga Khet Mazdoor Samity vs. State of West Bengal, [1996 SCC (4) 37], the Supreme Court affirmed that providing “adequate medical facilies for the people is an essenal part” of the government's obligaon to “safeguard the right to life of every person.” Ministry of Health and Family Welfare (MoHFW) adopted Reproducve and Child Health Programme where the hospital authority should provide “free transportaon services to pregnant woman in case of pregnancy related emergencies including delivery. This service is available round the clock irrespecve of BPL / APL / SC / ST category”. Such provisions are not implemented in case of Farida Begum. The state authority failed to provide adequate medical facilitates due to lack of medical staff and ambulance service. The husband of Late Farida Begum informed the fact-finding team that there was no ambulance service when her labor pains started. Non implementaon of JSY scheme and JSSK As menoned above under JSY scheme every woman is entled to ANC and post natal check-up. Farida Begum was registered under JSY, but during her pregnancy period she received only two ANC check-ups. Moreover, aer her instuonal delivery she has not received any JSY money. The following are the Free Entlements for pregnant women: • Free and cashless delivery • Free C-Secon • Free drugs and consumables • Free diagnoscs

81 • Free diet during stay in the health instuons • Free provision of blood • Exempon from user charges • Free transport from home to health instuons • Free transport between facilies in case of referral • Free drop back from Instuons to home aer 48hrs stay These benefits are given in addion to JSY financial assistance and are provided to all women who deliver in government health facilies, regardless of age, number of children, and/or economic status. Thus, from the above case study it is clear that in case of Farida, the state authority failed to provide free blood. Her husband paid Rupees 23,100/- for 7 units of blood and Rs. 2000/- in transport expenses. Thus, he spent a total of Rs. 25,100/- on medical services that should be totally free. Also, there is a provision of free transport from home to health facilies and free drop from instuons to home but as menoned above, Farida's husband had to hire private car to first to take her to the Primary Health Centre and then to Edmund Rural Hospital and then to Silchar and finally from SMCH to her home. Moreover, it is to be noted that due to lack of ambulance and transport facilies' she was not admied at the health centre and thus she had to wait for one enre night in her labour pain. He had to hire a private car and he pay Rupees 2000 for the same. Farida's husband who earns Rs. 5000 per month paid a total of Rs. 25,000 to try to save his wife's life. State failed to ensure equal treatment for underprivileged secons of society As menoned above, Arcle 12(1) of Convenon of Eliminaon and Discriminaon against Women (CEDAW) mandates eliminaon of discriminaon against women in health care to ensure women's equal access to health care services. India is a signatory country to the convenon. Arcle 21 of Indian Constuon provides every cizen the right to live with dignity and protecon against and in Pt. Parmanand Katara vs Union of India & Ors.,[1989 SCR (3) 997], the Supreme Court held that Arcle 21 of the Constuon casts the obligaon on the state to preserve life. In Laxmi Mandal vs. Union of India, Delhi High court held that in order to ensure reproducve rights of women, she should receive a minimum standard of care. Also, Assam Public Health Bill, 2010, guarantees specific standards and norms for safety and quality assurance of all aspects of health care including health care services and processes, treatments protocols, infrastructure, equipments, drugs, health care provider, within the Government, private and other non- governmental sectors. In case of Farida, we can conclude that her basic right to live was violated by the state authority by denying minimum services: • Ambulance services was not available • State authority failed to provide free blood • Doctors/nurses were not available at the primary health centre • Soon aer delivery she was asked to shi to another bed without giving her stretcher. Moreover, she was not provided bed pan to urinate. As a result she fell down twice and fainted. This clearly highlights the degrading treatment by the medical staff.

82 Conclusion Farida's death could have been prevented easily. Her case highlights very important gaps in health delivery system of India. From non-availability of ambulance services to absence of doctors and nurses, everything leads to Farida's death at an early age. It was her first delivery. The child survived and is taken care of by Farida's mother. There is a lack of supervision in the PHCs and CHC's therefore acon against malpracces is seldom taken by the Government. It is the State's duty to ensure safe motherhood but it failed to provide appropriate health services to Farida. Right from antenatal check-ups to post- delivery care, negligence on the part of the hospital staff is apparent. Already Farida's husband earns a meagre amount and now he is indebted because he took a huge loan from the market and friends to pay for Farida. The Government began various schemes to support people of low income group so that they do not hesitate in availing instuonal care but in reality they end up spending a huge amount of money.

83 DENIAL OF TREATMENT TO AN HIV POSITIVE WOMAN IN NEED OF HYSTERECTOMY IN RAJASTHAN Background The Government of India esmates that about 2.40 million Indians are living with HIV (1.93 -3.04 million) with an adult prevalence of 0.31% (2009). India’s highly heterogeneous epidemic is largely concentrated in only a few states — in the industrialized south and west, and in the north-east. The four high prevalence states of South India (Andhra Pradesh – 500,000, Maharashtra – 420,000, Karnataka – 250,000, Tamil Nadu – 150,000) account for 55% of all HIV infecons in the country. West Bengal, Gujarat, Bihar and Uar Pradesh are esmated to have more than 100,000 PLHA each and together account for another 22% of HIV infecons in India.1 Human immune deficiency virus infecon and acquired immune deficiency syndrome (HIV/AIDS) is a spectrum of condions caused by infecon with the human immunodeficiency virus (HIV). Following inial infecon, a person may experience a brief period of influenza-like illness. This is typically followed by a prolonged period without symptoms. As the infecon progresses, it interferes more with the immune system, making the person much more suscepble to common infecons like tuberculosis, as well as opportunisc infecons and tumors that do not usually affect people who have working immune system. HIV is transmied primarily via unprotected sexual intercourse (including anal and oral sex),contaminated blood transfusions, hypodermic needles, and from mother to child during pregnancy, delivery, or breaseeding. Some bodily fluids, such as saliva and tears do not transmit HIV. Common methods of HIV/AIDS prevenon include encouraging safe sex, needle-exchange programs, and treang those who are infected. There is no cure or vaccine; however, anretroviral treatment can slow the course of the disease and may lead to a near-normal life expectancy. According to more recent Naonal AIDS Control Organizaon data (2011), India has the esmated number of 2.08 million people living with HIV which accounts for about 0.3% of total populaon. According to NFHS-3 data, close to 28% of people in India have never heard about AIDS and about 80% of the people holds misconcepons and have paral knowledge about HIV/AIDS. A lile knowledge on HIV gives space for discriminaon and sgma to grow in the society. Other than society in general, these sgmas are also oen noced among healthcare service providers which results in denial for treatment and proper counseling at mes. Bihar is categorized as a low-prevalence but highly vulnerable state. Part of Bihar's vulnerability lies in the populaon which is predominantly rural, has high levels of poverty and illiteracy and a large migrant populaon. In 2006, Bihar State AIDS Control Society (BSACS), a body created by the Govt. of Bihar increased the number 2 of sennel sites to widen the scope of HIV surveillance. The northern border of State is an internaonal border with Nepal and almost porous. Availability of condom which prevents HIV transmission is low in Bihar as a whole. As per Naonal Family Health Survey –2005-2006 (NFHS-III), percentage of partners of ever married women using condoms is just 2.3 %. According to the Facility survey of 2003, just 50 % of district hospitals and PHCs had some stocks of condoms at the me of survey. Bihar State AIDS Control Society (BSACS) has made efforts by distribung free condoms through Targeted Intervenons for High risk groups (HRGs). The percentage of respondents seeking the treatment also emphasizes that the service delivery system needs to be strengthened so to make services accessible, available and friendly to people at need. Even aer all these efforts there sll are whole lot of gaps noced in the implementaon process.

1hp://www.worldbank.org/en/news/feature/2012/07/10/hiv-aids-india

84 There are a number of on-going challenges faced by countries in protecng human rights in the context of human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS):2 • Inadequate protecon against discriminaon: Although the number of countries reporng an- discriminaon laws in place has increased, nearly 3 in 10 countries sll lack such laws or regulaons. When an-discriminaon provisions are in place, they are oen not effecvely enforced. Fewer than 60 per cent of countries report having a mechanism to record, document and address cases of HIV-related discriminaon. In 2010, the vast majority of countries reported that they addressed sgma and discriminaon in their naonal HIV strategies; however, most countries did not have a budget for acvies aimed at responding to HIV-related sgma and discriminaon. • Strategic reorientaon of global and naonal HIV responses: Human rights-related programmes oen do not exist in naonal HIV responses. Where such programmes exist, they are generally not brought to scale or are scaered and fragmented. A strategic shi is required to: (i) invest in beer assessments of those most vulnerable to HIV and ensure adequate coverage of their needs; (ii) ensure meaningful engagement of ministries dealing with jusce, law enforcement, prisons, human rights, gender, migraon and labour, among others; and (iii) focus on the legal and social environments that are necessary for universal access to prevenon, treatment, care and support. • Decriminalizaon and legal protecons: The reform of punive laws that impede HIV responses and the strengthening of human rights protecons for people living with and vulnerable populaons are essenal to sustaining the AIDS response. Polical leaders should be supported in confronng issues involving decriminalizaon. Greater efforts must be made by States to reconsider the applicaon of criminal law against HIV transmission and exposure, sex work, drug use and homosexuality and their impact on access to HIV services. They should also reform laws that restrict sexuality educaon, impose travel restricons on people living with HIV or require mandatory HIV tesng. Specific aenon must be paid in law reform efforts to address gender-based violence, the HIV-related rights of women, children and other key populaon. • Increasing parcipaon of those vulnerable to and living with HIV: The Greater Involvement of People Living with HIV is a long-standing principle of the HIV response and one of its human rights successes. However, as evidence shows heightened vulnerability to HIV among members of key populaons it appears crical to renew, expand and improve the parcipaon of all those vulnerable to and living with HIV in all aspects of the response. • Eliminang gender-based discriminaon and violence: Many gender analyses show how subordinaon of women and girls and violence against them drive HIV transmission and raise gender-based barriers to care, treatment and support. The mobilizaon of Government, civil society and donors is needed to scale up programmes that address this issue and violence is a priority. · Financing naonal programmes: The mobilizaon of both Governments and donors to invest financial and technical resources in human rights-centred programmes is urgently needed, as are resources for

2Human rights Council, “The protecon of human rights in the context of human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS)”, 14th of December, 2011

85 transparent and independent evaluaon of measures taken. More resources are needed for appropriate and comprehensive HIV educaon for children. Health-service professionals should be equipped to protect confidenality, ensure informed consent and have funconing mechanisms for redress when people face abuse and discriminaon. • Universal access to prevenon, treatment, care and support: With nearly two in three people eligible for anretroviral therapy sll lacking access,3 Member States will have to adopt reinvigorated approaches to the treatment, care and support needs of people living with HIV. This includes a recommitment to overcoming legal and regulatory, trade and other barriers that block access to prevenon, treatment, care and support. Sohilla's Case Sohilla lives in Nawada which falls in Chhapra ditrict of Bihar which is about 40-50 kms from Patna. She was infected with HIV virus from her husband who died due to AIDS about 5 years ago. Her husband's family did not allow her to live in the house. Sohilla was abandoned by her husband's family. They were of the view that AIDS spread with touch and that the husband got it from her. Everyone blamed Sohilla for her husband's death. With her two children, a 7 year old boy and a 4 year old girl she le her husband's house. She knocked at her relave's doors but aer learning her HIV status no one came forward to help. Sohilla couldn't turn to her parents in fear of shame due to her HIV posive status and the death of her husband. Hence she decided to start working. She began to work in 4-5 houses everyday where she washed utensils and cleaned houses. She managed to find a small house on rent comprising one room in Nawada. She didn't reveal her HIV posive status to any of the people residing in the houses where she works, fearing that she would be fired from her job. She barely makes some money by washing utensils and cleaning houses. Her world was shaken when she learned that her son is also infected with HIV virus. While interacng with the fact finders from Prayas she shared her fear with them that she doesn't want to see her son suffering like her. To add to the already exisng woes, Sohilla suffered from immense pain due to prolapse of her uterus. In the past one year, her uterus would oen fall out of her body. It became hazardous and infected. It was very painful for her to even sit, let alone walk. Sohilla is vicm to sgma arising due to her HIV posive status. Aer almost a year of bearing pain and discomfort, she finally decided to approach a doctor. Role of Hospitals in delay of treatment When Sohilla couldn't bear the pain any further she gathered all her courage and approached Sadar Hospital in Patna on 14th of April, 2015. The doctors checked her and asked her to immediately sign for a hysterectomy operaon. Soon aer, they learned about her HIV posive status and they changed their diagnosis. The doctor referred her to Patna Medical College Hospital (PMCH) and menoned her HIV posive status in bold in the referral slip. She approached PMCH on 30th of April, 2015. It took her about 15 days to decide to go to another hospital because of fear of sgmazaon. All her hopes were shaered when the doctor at PMCH refused surgery. He prescribed her few medicines and asked her to go home. He even menoned her HIV status on the prescripon in bold leers. Denong boldly & disnctly the HIV+ status of the Peoner on her medical prescripon is highly improper and illegal as it breaches the confidenality of the paent. Sohilla filed a representaon n 19th of June, 2015 with the help of a local NGO in Patna which requests the doctor for performing the surgery but there was no posive response. Sohilla ran from pillar to post to try to

86 avail medical aenon but to her dismay all her efforts failed. Finally she had to file a peon in the High court. The court ordered the Doctor of PMCH Hospital to immediately administer the surgery for hysterectomy so as to provide relief to Sohilla. The judge was furious at the doctor who denied treatment to Sohilla and remarked- “Do you want to go to jail?” Thereaer, the doctor immediately operated on Sohilla. Present condion Sohilla has recovered from her surgery. She has found immense relief aer hysterectomy. Now she walks without pain and is able to work properly. She is content aer the operaon and stated that she was happy with the court's order. She also shared her dissasfacon with the health system. Even aer the operaon, she feels discomfort while sharing her HIV posive status with a doctor. She hasn't become used to the flinching and reluctance of the doctors yet. Sgma of HIV/AIDS: Understanding discriminaon of PLHIV(Persons Living with HIV) in health facilies Studies from different parts of the world reveal that there are three main immediately aconable causes of HIV-related sgma in health facilies: lack of awareness among health workers of what sgma looks like and why it is damaging; fear of casual contact stemming from incomplete knowledge about HIV transmission; and the associaon of HIV with improper or immoral behaviour. To combat sgma in health facilies, intervenons must focus on the individual, environmental and policy levels. Unfortunately, the health sector is one of the main sengs where HIV-posive individuals and those perceived to be infected experience sgma and discriminaon. Studies show that HIV-related sgma in this context is pernicious, and that it's physical and mental health consequences to paents can be damaging. Reducing HIV-related sgma in health sengs should be a leading priority for health care managers. Yet lile aenon has been paid to this issue, parcularly in low-resource countries grappling with burgeoning HIV epidemics. Sgma and discriminaon by health workers compromises their provision of quality care, which is crical for helping paents adhere to medicaons and maintain their overall health and wellbeing. Sgma also acts as a barrier to accessing services both for the general populaon, as well as health providers themselves. This can have serious implicaons for health workers and health facilies when HIV-infected health workers delay or avoid care and become seriously ill or die, causing further strain on an overburdened health care system. Second, there is insufficient capacity among health care managers regarding how to effecvely address sgma and discriminaon through programmes and policies. Third, there is a persistent misconcepon that sgma is too pervasive a social problem to effecvely change. Sohilla's case highlights prevalence of sgma of HIV and AIDS in the health sector. Had the doctor operated on her immediately aer she approached the hospital, Sohilla would have found relief quite early and she wouldn't have had to undergo a lot of mental and physical trauma. For availing simplest of treatment, an HIV posive person has to undergo a lot of stress. She already doesn't have any financial or emoonal support from her family or friends. This is a bale that she is fighng alone. The court's immediate order provided her a relief. The doctor operated on her only because of fear of going to jail. If Sohilla hadn't filed a peon at the court, she would have been dead by now. The Government health facilies are not adept at handling cases of HIV posive persons. And Sohilla, who lives hand to mouth due to a very low economic status, couldn't have afforded treatment from a private facility hence she had to depend on the nearest Government health facility.

87 HIV/AIDS is spreading throughout the world at an alarming rate and it has emerged as a serious public health challenge. The sgma, prejudice, fear and silence which surround AIDS make it a difficult problem to address. The widespread abuse of human rights and of fundamental freedoms associated with HIV/AIDS has become a concern in all parts of the world. Following is a summary of the human rights of PLWHA (Persons living with or affected by HIV Aids) and the violaons of their rights:

Human Rights Relevant to HIV/AIDS

• The right to non-discriminaon, equal protecon and equality before the law

• The right to life

• The right to the highest aainable standard of physical and mental health

• The right to liberty and security of person

• The right to freedom of movement

• The right to seek and enjoy asylum

• The right to privacy

• The right to freedom of opinion and expression and the right to freely receive and impart informaon

• The right to freedom of associaon

• The right to work

• The right to equal access to educaon

• The right to an adequate standard of living

• The right to social security, assistance and welfare

• The right to share in scienfic advancement and its benefits

• The right to parcipate in public and cultural life

• The right to be free from torture and cruel, inhuman or degrading treatment

Violaons of Human Rights of PLWHA (Persons Living with or affected by HIV/AIDS)

• Denial of health care and treatment

• Denial of and/or removal from employment

• Lack of access to and availability of drugs

• Denial of various services including insurance, medical benefits etc.

• Lack of access to informaon

• Lack of access to legal remedies

88 • Lack of strong support system including family, spouses, friends and relaves

• Discriminaon against children of HIV posive parents including in admission of these children to schools

• Ostracisaon of PLWHA from community and family

• Prevenon of children from playing, interacng or eang with

There is a gross violaon of human rights in Sohilla's case. She has been denied treatment and the doctor didn't maintain confidenality by highlighng her HIV posive status in the prescripon. It is crucial to note that there is a lack of support of family and relaves in Sohilla's case. She was thrown out of her husband's house aer her HIV posive status was established and when her husband passed away due to Aids. Due to fear of not geng any job Sohilla has never revealed her HIV posive status to anyone else. The State failed to provide treatment to Sohilla in me. Although her hysterectomy surgery was successful and now she has recovered from it but one can't overlook the amount of agony Sohilla endured in the process of trying to avail medical aenon. Recommendaons

In September 1996, the Second Internaonal Consultaon on HIV/AIDS and Human Rights, convened by UNAIDS and the Office of the UN High Commissioner for Human Rights, led to the formulaon of the Internaonal Guidelines on HIV/AIDS and Human Rights. The Guidelines address mul-sectoral responsibilies and accountability, including improving the roles of the government and private sector. Following are the guidelines that State/UT must follow in India to prevent delay of treatment and sgma of PLWHA and ensuring health rights to them:

89 90 Conclusion Like Sohilla, there are innumerable cases where health rights of PLWHA are violated. The doctor immediately agreed to operate on Sohilla when the court ordered him and quesoned him. The sgma aached to HIV is sll present. The aim of any health facility should be to treat paents because they need care and treatment, not because the court orders them to aer the hospital has denied health care to the paent. Sohilla wouldn't be alive to take care of her children if it hadn't been for the court's order in her favour. It raises a lot of quesons at the kind of training of hospital staff and their atude towards HIV posive paents. The internaonal guidelines clearly say that it is the state's responsibility to ensure availability of and access to treatment and care provided by health facilies meant for PLWHA. Sohilla being an HIV posive person was not only ostracized by her husband's family, but she was also denied surgery despite her condion being crical due to uterus prolapse. It is mandatory for the Government health facilies to provide a hassle free and sgma free treatment for HIV posive persons.

91 LIST OF ACRONYMS

ASHA Accredited Social Health Acvist ADMO Assistant District Medical Officer ANC Antenatal Checkup ANM Auxiliary Nurse Midwife ASHA Accredited Social Health Acvist AWC Anganwadi Centre AWW Anganwadi Worker AYUSH Ayurveda, Yoga, Unani, Siddha, and Homeopathy (Doctor) BPL Below Poverty Line CDMO Chief District Medical Officer CHC Community Health Centre CRC Convenon on the Rights of the Child DLHS-3 District Level Health Survey 2007–2008 HMIS Health Management Informaon System HPS High Performing State IFA Iron Folic Acid (tablet) IPHS Indian Public Health Standards JSSK Janani Shishu Surakasha Karyakram JSY Janani SuraskhaYojana LPS Low Performing State FPIS Family Planning Insurance Scheme / Family Planning Indemnity Scheme GOI Government of India HSG Hysterosalpingogram IUD Intrauterine Device ICESCR Internaonal Covenant on Economic, Social and Cultural Rights ICCPR Internaonal Covenant on Civil and Polical Rights MOHFW Ministry of Health and Family Welfare MTP Medical Terminaon of Pregnancy MO Medical Officer NALSA Naonal Legal Services Authority NHM Naonal Health Mission

92 NRHM Naonal Rural Health Mission OPD Outpaent Department OT Operaon Theatre PHC Primary Health Centre PIP Programme Implementaon Plan PPIUCD Post-Placental Intrauterine Contracepve Device PLWHA Persons Living With HIV AIDS RCH Reproducve and Child Health RTI Reproducve Track Infecons SC / ST Scheduled Caste / Scheduled Tribe STI Sexually Transmied Infecons MBBS Bachelor of Medicine/Bachelor of Surgery MCP Mother and Child Protecon (Card) MDG Millennium Development Goal MMR Maternal Mortality Rate MO Medical Officer MPW Mul-Purpose Worker NALSA The Naonal Legal Services Authority NFHS-3 Naonal Family Health Survey 2005–2006 NHM Naonal Health Mission NRHM Naonal Rural Health Mission OBGYN Obstetrician/Gynaecologist OT Operaonal Theatre PHC Primary Health Centre PPH Postpartum Haemmorhaging RKS Rogi Kalian Sami RTI/STIs Reproducve Tract Infecons and Sexually Transmied Infecons TT Tetanus Toxoid UNFPA United Naons Populaon Fund UNICEF United Naons Children's Fund VHND Village Health and Nutrion Day (“MamataDiwas”) WHO World Health Organizaon

93 LIST OF LAWS RELATED TO WOMEN WOMEN-SPECIFIC LEGISLATIONS 1. The Immoral Traffic (Prevenon) Act, 1956 2. The Dowry Prohibion Act, 1961 (28 of 1961) (Amended in 1986) 3. The Indecent Representaon of Women (Prohibion) Act, 1986 4. The Commission of Sa (Prevenon) Act, 1987 (3 of 1988) 5. Protecon of Women from Domesc Violence Act, 2005 6. The Sexual Harassment of Women at Workplace (PREVENTION, PROHIBITION and REDRESSAL) Act, 2013 7. The Criminal Law (Amendment) Act, 2013 WOMEN-RELATED LEGISLATIONS 1. The Indian Penal Code,1860 2. The Indian Evidence Act, 1872 3. The Indian Chrisan Marriage Act, 1872 (15 of 1872) 4. The Married Women's Property Act, 1874 (3 of 1874) 5. The Guardians and Wards Act,1890 6. The Workmen's Compensaon Act, 1923 7. The Trade Unions Act 1926 8. The Child Marriage Restraint Act, 1929 (19 of 1929) 9. The Payments of Wages Act, 1936 10. The Payments of Wages (Procedure) Act, 1937 11. The Muslim Personal Law (Shariat) Applicaon Act, 1937 12. Employers Liabilies Act 1938 13. The Minimum Wages Act, 1948 14. The Employees' State Insurance Act,1948 15. The Factories Act, 1948 16. The Minimum Wages Act, 1950 17. The Plantaon Labour Act, 1951 (amended by Acts Nos. 42 of 1953, 34 of 1960, 53 of1961, 58 of 1981 and 61 of 1986) 18. The Cinematograph Act, 1952 19. The Mines Act 1952 94 20. The Special Marriage Act, 1954 21. The Protecon of Civil Rights Act 1955 22. The Hindu Marriage Act, 1955 (28 of 1989) 23. The Hindu Adopons & Maintenance Act, 1956 24. The Hindu Minority & Guardianship Act, 1956 25. The Hindu Succession Act, 1956 26. The Maternity Benefit Act, 1961 (53 of 1961) 27. The Beedi& Cigar Workers (Condions of Employment) Act, 1966 28. The Foreign Marriage Act, 1969 (33 of 1969) 29. The Indian Divorce Act, 1969 (4 of 1969) 30. The Contract Labour (Regulaon & Abolion) Act, 1970 31. The Medical Terminaon of Pregnancy Act, 1971 (34 of 1971) 32. Code of Criminal Procedure, 1973 33. The Equal Remuneraon Act, 1976 34. The Bonded Labour System (Abolion) Act, 1979 35. The Inter-State Migrant Workmen (Regulaon of Employment and Condions of Service) Act, 1979 36. The Family Courts Act, 1984 37. The Muslim women (Protecon of Rights on Divorce) Act, 1986 38. Mental Health Act, 1987 39. Naonal Commission for Women Act, 1990 (20 of 1990) 40. The Protecon of Human Rights Act, 1993 [As amended by the Protecon of Human Rights (Amendment) Act, 2006 - No. 43 of 2006] 41. Juvenile Jusce (Care and Protecon of Children) Act, 2000 42. The Child Labour (Prohibion & Regulaon) Act 43. The Pre-Concepon and Pre-Natal Diagnosc Techniques (Prohibion of Sex Selecon) Act, 1994 44. The Prohibion of Child Marriage Act, 2006

95