Project Proposal s2

Project Proposal

Project Title:

"Thalassemia" the burning problem of Bangladesh

Submitted to

GlobalGiving Foundation 1023 15th Street, NW 12th Floor

Submitted by Healthways Foundation, Seaujgari, karmicale road, Bogra-5800, Bangladesh, Phone- 880-5168093, e-

mail: [email protected], www.healthwaysbd.org Organizational Information:

 Name of Organization : Healthways Foundation.  Acronym : HF  Head Office Address : Healthways Foundation House- 5/2 (K), Block- F, Lalmatia, Mohammadpur Dhaka- 1207  E-mail : [email protected]

 Mailing Address : Healthways Foundation Seaujgari, carmicale road, Bogra-5800 Bangladesh  Phone : +880-5168093.  Cell : +880-1712192577,  E-mail : [email protected]  Web site : www.healthwaysbd.org  Name of Chief Executive : Md. Shahidul Islam  Contact person : Md. Shahidul Islam  Designation : Executive Director  Legal status:

SL Registering Body Registration Numb Date 1. NGO Affairs Bureau 2702 23/05/2012

2. Directorate of Joint Stock Company Ltd. S-10578 22/11/2009

Vision: Vision of HF is to observe the society where people are valued on basis of their works, enjoy equal rights in a just society

Mission: To promote the social, economic, environmental and cultural status of the hard-core poor communities through awareness, capacity building, leadership development, education, legal assistance and economic support for raising their voices and realize a dignified life Project Details

Project Background: Thalassaemia is the most common inherited blood disorder in the world. According to World Health Organization (WHO) at least 30% of Bangladesh population are carrions of Beta thalassaemia and 4.0% are carriers of Hb-E in Bangladesh. It is presumed that approximately 6000 thalassaemiatic children are born each year in Bangladesh. It is passed on from parents to their children, causing an inability to produce adequate amount of haemoglobin and leading to severe haemolytic anaemia. Haemoglobin is the substance that gives blood its red colour; transport O2 from the lungs to the tissues and carries CO2 from the tissues to the lungs. Symptoms appear a few months after birth, and without treatment death will ensue in early childhood. Treatment may extend the life into early adulthood but is very cumbersome and costly, mainly consisting of blood transfusions every 2-4 weeks and administering desferrioxamine by continuous infusion for 10-12 hours daily using a pump, to remove excess iron from the body. Regular blood transfusion and iron removal treatment cost US$ 140 - US$ 150 per month which exceeds the monthly income per capita of the parents (US$, 135, HIES Report-2010). Bone Marrow Transplant (BMT) which may cost US$ 20,000.00 is quite unimaginable for the poor parents. As a result the Infant Mortality Rate (IMR) increasing along with death of the mothers at the labour period. Though Thalassaemia is a silent killer, actions are little from both government and non government side to introduce it among the people of all classes and no pragmatic steps have been mentioned in the Health, Nutrition and Population Sector Programme ( HNPSP )

Thalassaemia affected children from the marginalized section are the main beneficiaries of HF.Through our activities, we want to create awareness among the parents and create a favorable environment for the thalassaemic children where they can lead an agony free life, reduce birth rate of thalassaemia affected children, extend treatment facilities, make the affected children and parents self-reliant, create a strong network with the national and international thalassaemia organizations, research on thalassaemia, make people known to thalassaemia as a serious disease, include thalassaemia in (HNPSP).

Activities Details:

Awareness creation: awareness about thalassaemia will be created among the common mass, parents of the thalassaemiatic children, government and medical communities by holding seminars, sensitization meetings, workshops, street drama, video shows, day observation, and community based awareness programs.

Provision of Genetic counseling: Our Genetic Counselors will meet with the thalassaemiatic children and their parents regularly and work to reduce misunderstandings about the causes of genetic disease with correct information, and to increase control of their own and their family's health. Population Screening: this is done through early genetic diagnosis and Prenatal diagnosis.

Support through the local and national health institutes: A strong linkage will be created with Bangladesh Thalassemia Foundation (BTF), Bangladesh Thalassaemia Samyty (BTS) Yunus Center, Dhaka Shishu Hospital, Upazial Health Complex, Thana Health Complex and Ministry of Health and Family Welfare (MoHFW). Any opportunity provided by the networks is received by HF for the poor children.

Intensive and affordable care: HF will set up a Day Care Centre in cooperation with Sarawak General Hospital (SGH). The services are available for the poor children 24 hours. It is equipped with technical instruments along with a Hot Line.

Inclusion of the common mass: Thalassaemia Support Group (TSG) will be formed consisting of 232 members from the civil society, students, religious representatives, social representatives and doctors. It creates awareness among the parents, children along with people on thalassaemia.

Organization of parents: The patrents of thalassaemia affected children will form Parents Support Group (PSG) to make the treatment available and to help the other parents to get the treatments.127 PSG has been formed so far and each PSG consists of 35 parents. Each PSG come forward when blood and other treatment are unavailable for the other groups.

Financial aid: Thalassaemia Welfare Fund (TWF) will be founded to provide financial for treatment of the poor Thalassaemia affected children with the cooperation from the rich people, civil society, welfare institutions, and festival donation from people of all classes.

Provision of Health Education: TSG and the Counsellor will arrange monthly meetings with the School Management Committee (SMC) and parents of the Thalassaemia affected children to provide health education.

Project Impact  The birth rate of thalassaemia affected children will be been reduced to a lower point. We are targeting to reduce the rate from 30-45% to 10-15%  Marriage between two carries will be reduced. Now major men and women are taking prenatal diagnosis before their marriage.  Thalassaemiatic children will lead normal and agony free life in our program areas. They are receiving education, joining social festivals with other children, joining workforce after receiving education, enjoying life as the other normal children do.  Misunderstanding and unawareness on thalassaemia will be reduced significantly. Parents will atke more and proper care of their children. Thalassaemia affected children will not be considered as burden anymore.  Parents will be organized on the health issue of their children. The will believe that their children can lead a normal life and they disseminate the awareness and health education among the other parents.  Rich and middle class people will come forward. They will stretch their helping hand towards the poor children.  Blood transfusion will be made available for the poor parents. In this regard, PSG, TWF, TSG will be playing a significant role.  Bangladesh Thalassemia Foundation (BTF), Bangladesh Thalassaemia Samyty (BTS) Yunus Center, Dhaka Shishu Hospital, Upazial Health Complex and Ministry of Health and Family Welfare (MoHFW) will pay more attention in our program areas and opportunities are being availed time to time provided by them.  Thalassaemia has been recognized as a major health issue in our program areas. Local health institutions e.g Upazila and Thana Health Complex, Satellite Clinics conducted by Ministry of Health and Family Welfare (MoHFW) and local medical centers will be sensitized. They will provide thalassaemia treatment with lower cost.

Governance and Accountability

The governance structure of HF promotes transparency and accountability. General Body is comprised of a group of highly qualified and experienced professionals and dignitaries of the society. The General Body, consisting of 21 members organizes at least one general meeting annually in a transparent and democratic manner all the way. The General Body approves the activities of the Executive Body. The Executive body elected by the members of the General Body for 2 Years, is comprised of 7 members. It is the supreme authority to frame policies and guidelines to run the organization. The Chairman is appointed by the Executive Body, play the role of Chief Executive of the Executive Body in accordance with the recognized rights and responsibilities of the designation.

All the decisions come out from any board/committee meetings are reviewed in the next meetings. The respective responsible persons are accountable to implement the decisions. Budgets and audits are reviewed in the board meetings and necessary decisions come out for the better performance.

A chain of accountability is followed through root level to executive level in HF. Various accountability tools and systems are followed. Field level workers are accountable to their respective supervisors, supervisors are accountable to their respective project/program coordinator, and project/program coordinator is accountable to Chairman. Regular progress report of the programs and projects are sent to the relevant donors and partners. Regular external and internal audit is done by the internal auditor/reputed audit farm

We conduct an internal audit to assist management by providing independent advice on operations and performance and by assessing the effectiveness of internal control. In addition, periodic monitoring analysis using selected indicators to enable managers to determine whether key activities are being carried out as planned and whether they are having the expected impact on the target population. External Audit is conducted by the reputed audit farm and it is open for donors and beneficiaries.

Effective Finance and Administration

Administrative Department is consisted of 32 staffs supervised and monitored by the Admin Coordinator and it is sub divided into some committees and teams and the whole departments run as per HF’s Personnel Management Policy. Admin staffs sit for meetings monthly and progress, challenges, needs, action plan for the next month, undone activities, monitoring reports are discussed and reviewed in the meeting.

Monitoring Team is the part of Administrative Department is consisted of 7 members headed by Admin Coordinator. Monitoring are arranged to monitor that the finance and inputs are/are not being distributed timely, to monitor that the activities are/are not being done as per proposed budget line item, to monitor that proposed services of all personnel involved with the respective projects are/are not being effected properly, to monitor that the cooperation and faith among the team members are/are not existed. The overall monitoring issues include; activities monitoring, financial monitoring, administration monitoring

HF has a Financial Policy stating all procurement system and a personnel policy including HR development procedure are approved by the Executive Committee. It follows its yearly budget plan to meet up all cost occurs during the course of the financial period. The books of accounts are updated regularly and the financial statements are prepared and oversee by qualified core staff. Accountability and transparency is followed everywhere and record is kept for every single income and expenditure. HF’s internal auditor audits on a regular intervention and external audit is done by the reputed audit farm. Besides, audit from partners and donor’s side arranged regularly and the reports are reviewed in the GB, EC and Management Meetings.

Innovation and Flexibility

Working on Thalassaemia itself an innovative idea in our program areas as there is no pragmatic step was taken by any government and non government organizations to introduce thalassaemia and way to lead a normal life before us. Among our activities, the following activities are innovative not only in Bogra district (our program area) but also in all over Bangladesh. Hotline: HF will set up a hotline which is available for the thalassaemia affected children and their parents for counseling and proper care that have made HF exceptional from other organizations.

Thalassaemia Support Group (TSG): Inclusion of civil society, students, religious representatives, social representatives and doctors on the awareness creation about thalassaemia and blood donation program have been introduced for the first time in this region.

Parents Support Group (PSG): The patrents of thalassaemia affected children will form Parents Support Group (PSG) which is the first initiatives to organize the parents not only in this region but also all over Bangladesh.

Thalassaemia Welfare Fund (TWF): HF will found Thalassaemia Welfare Fund (TWF) to provide financial and income generating help of the poor and disadvantaged Thalassaemia affected children and such type of initiative was never seen before in this region.

Provision of Health Education: Health education and counselling in the school level is introduced for the first time by us.