Summary of New Findings

Literature Review Prepared by Johns Hopkins Center for Communication Programs – Baltimore, 2010

Background

In this review we will firstly present a summary of the WHO and UNICEF guidelines and recommendations with regard to pediatric HIV treatment and diagnosis, and then we will present the national Ugandan guidelines and objectives related to pediatric HIV. We will also show relevant finding on uptake of HIV treatment and services from national Ugandan surveys. Finally we will discuss the barriers and facilitators of uptake of HIV treatment and services in Uganda.

WHO guidelines for Pediatric HIV diagnosis and treatment

In 2010, the WHO published its recommendations for the diagnosis and treatment of infants and children with HIV (10). Those recommendations were based on a public health approach to HIV considering the most efficient and cost effective way to tackle pediatric HIV. To establish diagnosis in infants and children WHO strongly recommends that(10):

1. Diagnostic HIV serological assays have a minimum sensitivity of 99% and specificity of 98%, and that the tests be performed by a quality-assured, standardized and validated laboratory.

2. Diagnostic HIV virological assays (usually at or after 6 weeks of age) have a sensitivity of at least 95% (ideally greater than 98%), and specificity of 98% or more, and that the tests are performed by a quality-assured, standardized and validated laboratory.

3. HIV virological testing be used to diagnose HIV infection in infants and children less than 18 months of age.

4. HIV DNA be used on whole blood specimen or dried blood spots (DBS) HIV RNA on plasma or DBS ultrasensitive p24 antigen (Up24 Ag) on plasma or DBS in infants and children undergoing virological testing

5. All HIV-exposed infants have HIV virological testing at 4 to 6 weeks of age or at the earliest opportunity thereafter.

6. In infants with an initial positive virological test result, it is strongly recommended that ART be started without delay and, at the same time, a second specimen be collected to

1 verify the initial positive virological test result. Do not delay ART, while waiting for the results of the verification of the first positive virological result test.

7. Test results from virological testing in infants be returned to the clinic and child/mother/carer as soon as possible, to enable prompt initiation of ART.

8. All infants with unknown or uncertain HIV exposure have their HIV exposure status ascertained.

9. Well, HIV-exposed infants undergo HIV serological testing at around 9 months of age (or at the time of the last immunization visit). Those who have reactive serological assays at 9 months should have a virological test to identify infected infants who need ART.

10.Infants with signs or symptoms suggestive of HIV infection undergo HIV serological testing and, if positive (reactive), virological testing.

11.Children aged 18 months or older, with suspected HIV infection or HIV exposure, have HIV serological testing performed according to the standard diagnostic HIV serological testing algorithm used in adults.

12.In sick infants in whom HIV infection is suspected, and virological testing is not available, HIV serological testing and use of the clinical algorithm for presumptive clinical diagnosis of HIV infection is strongly recommended.

In addition to the above recommendations for pediatric HIV diagnosis, the WHO 2010 report also includes the latest recommendations on:

 When to start antiretroviral therapy in infants and children

 What to start − recommended first-line ART regimens for infants and children

 Clinical and laboratory monitoring

 First-line regimen treatment failure; when to switch regimens

 Choice of second-line regimens in the event of treatment failure

 Considerations for infants and children with tuberculosis and HIV

 Considerations for the nutrition for HIV-infected infants and children

 Adherence to ART

The detailed recommendations on each of the above can be found in the WHO report (reference 10). It available for free download from the link: 2 http://www.who.int/hiv/pub/paediatric/paed-prelim-summary.pdf

WHO guidelines on PMTCT include (2009): (3)

 Antiretroviral therapy for all HIV-positive pregnant women with a CD4 count below 350 or WHO stage 3 or 4 HIV disease, with treatment to begin without delay  Longer provision of antiretroviral prophylaxis for HIV-positive pregnant women who are not in need of ART for their own health  Where mothers are receiving ART for their own health, infants should receive prophylaxis with nevirapine for six weeks after birth if the mother is breastfeeding, and prophylaxis with either nevirapine or AZT for 6 weeks if the mother is not breastfeeding  Giving antiretroviral therapy to the mother or child throughout the breastfeeding period, with the recommendation that breastfeeding and prophylaxis should continue until 12 months of age if the infant is either HIV-negative or of unknown status.  Where mother and infant are both HIV-positive, breastfeeding should be encouraged for at least the first two years of life

UNICEF priorities for preventing HIV among mothers and children (3)

1. Accelerate the scale-up of PMTCT services and early infant diagnosis to contribute to the elimination of HIV transmission to young children. 2. Support and empower adolescents, particularly girls, to identify and respond to their own vulnerabilities. 3. Protect the rights of adolescents and young people living with HIV to receive good quality support and services. 4. Ensure that adolescents who are in situations of the greatest risk are reached by HIV prevention, treatment, care and support services. 5. Scale-up child-sensitive social protection, a necessary part of the response for children affected by AIDS. 6. Strengthen the community capacity to respond to the needs of children affected by AIDS by preventing the separation of families and improving the quality of alternative care. 7. Strengthen whole systems so that gains made on behalf of women and children affected by AIDS can be extended and sustained 8. Improve data gathering and analysis to achieve results for children, and identify gaps in equitable coverage of and access

In 2006, the national PMTCT policy guidelines with respect to infant feeding for HIV positive mothers in Uganda include:

3  Mothers living with HIV and their partners will be counseled on infant feeding, within the context of HIV infection to enable them make an informed and appropriate choice. Adequate support will be given to them to facilitate practice of the chosen method.

 A mother should opt for replacement feeding if it is Affordable, Feasible, Acceptable, Sustainable, and Safe

 A mother living with HIV will continue to breastfeed the infant who tests HIV positive for as long as possible

In Uganda, the Campaign to End Pediatric HIV and AIDS (CEPA) developed four objectives to build the Uganda National Advocacy Action Plan (NAAP): (4)

1. Family-Centered Care and Nutrition. Expand access to PMTCT+ and pediatric treatment, care, and support, including nutrition services, and integrate child and family services with other health services in order to improve survival rates and health outcomes for children, HIV-positive mothers, and their families. 2. Early Infant Diagnosis and Treatment. Expand access to early infant diagnosis and earlier and improved pediatric treatment in order to improve survival rates and health outcomes for children. The 2008 global WHO guidelines on care for infants born to HIV positive mothers provide for; . HIV antibody testing at birth, and again at 6, 12 and 18 months of age, . HIV/PCR at 4 weeks and again at 4 months . ART (TMP+SMX) from 4 weeks until there is confirmation of HIV negative status . Vitamin A 100,000 IU at 9 months, 200,000 IU every 6 months until the age of 5 years

3. Access to Appropriate Medications. Reduce distribution barriers and increase the global supply of high-quality, low-cost lifesaving medicines for children and their families, including ARVs, drugs to treat opportunistic infections, and first and second-line regimens to ease dosing and administration. 4. Full Funding to Eliminate Pediatric AIDS. Secure the financial resources needed to facilitate country-level scale-up of PMTCT+ and pediatric and maternal treatment programs.

Adherence to ARTs:

4 Adherence rates exceeding 90% are desirable in order to maximize benefit. Adherence in the first days and weeks is critical for long-term success. Non-adherence in the first few weeks may lead to the development of the premature development of drug-resistant virus. (1)

Uptake of HIV services in Uganda

The 2007 National Pediatric HIV/AIDS Survey found great disparities in access to HIV services among children in Uganda. Specifically, the findings showed that (5)

 There is disparity of distribution of services between rural (9.8%) and urban areas (90.2%).  Overall the proportion of Children under ART is low (only 8.3%)  The Eastern region appears to have high numbers of children enrolled – probably because good record keeping. Low access in the Mid-Northern data set could be due to poor record keeping or real difficulties in acces  Research centers are seen to cater for more children under ART (19%) while lower level units fair poorly in ART catering for children. According to the 2006 UDHS (2) only 18 percent of women who gave birth in the two years before the survey were counseled, tested for HIV, and received their test results.

In response to these findings, the 2007 National Pediatric HIV/AIDS Survey recommends strengthening the Pediatric HIV services at the lower level Health Units, rural areas and Mid-Northern region which had the smallest numbers of children under care and on ART. This can be done by training more Health workers, sensitization of the public and increasing PMTCT services which are a good entry point

To improve access to ARTs, Uganda is currently scaling-up all basic HIV care programs. Partner support for scaling-up paediatric care has increased (PEPFAR, UNICEF, EGPAF, Clinton Foundation). In addition, Over 2000 health workers have been trained in comprehensive HIV/AIDS care including ART management. (9)

Barriers to ART adherence and HIV service uptake

5 Drug related barriers and facilitators to adherence in children include: (1)

1. Lack of pediatric formulations (1) (7) Because of the lack of appropriate pediatric formulations for certain drugs, caregivers of pediatric HIV patients may break or crush tablets meant for an adult patient in an attempt to produce child-size doses. With tablets that are asymmetric or not scored, this may lead to administration of erratic and inappropriate doses.(12)

2. Poor palatability, especially with liquid formulations Bad-tasting drugs are a well- recognized factor in treatment failures in children and lead practitioners to try many approaches to improve palatability of ARV drugs for children (12). Sometimes clinicians resort to insertion of gastrostomy tubes for medication administration (12)

3. High pill burden or liquid volume Many drugs are now being coformulated into tablets that contain 2 or 3 different ARV agents. These fixed-dose combinations (FDCs)26–28 are easier to prescribe and dispense, which minimizes errors. A lower pill burden may enhance patient adherence to therapy. Developing FDCs that are appropriately formulated for children should be a high priority for pharmaceutical companies. (12)

4. Frequent dosing requirements: Simplified dosing guides have been developed by the WHO and are readily available to clinicians who care for children and adolescents with HIV infection in resource-limited settings (see www.who.int/hiv/paediatric/en/index.html). These guides will increase the accuracy of dosing and dispensing ARV medications to these patients. (12) (13)

5. Dietary restrictions: Unlike antiretroviral agents developed earlier in the HIV epidemic, many antiretroviral medications that have been approved in recent years have sufficiently long half-lives to allow for once-daily dosing, and most also do not have dietary restrictions (14)

6. Side-effects such as metabolic complications and lipodystrophy can adversely affect adherence (13)

7. As the child health improves, the impetus to continue therapy decreases.

Individual level barriers and facilitators to adherence include:

1. Knowledge that antiretroviral drugs can reduce the risk of MTCT. (2)

2. Knowledge that ARVs taken during pregnancy can reduce the risk of HIV transmission. According to the 2004-05 UHSBS (2) Knowledge of ARVs is fairly low in North Central (29 percent of women and 35 percent of men), one of the regions with the highest HIV- prevalence in the country.

6 3. Peer support groups are particularly beneficial for mothers with young children (1)

4. Knowledge about the availability of preventative services: the 2004-05 UHSBS showed that 77 percent of men and about half of women know of at least one source for male condoms. Young people in urban areas are much more likely to know a source for condoms than those in rural areas.

Health provider level barriers and facilitators to treatment adherence and service uptake include:

1. Commitment and involvement of a caregiver: this may be difficult if the family is disrupted due to health or financial conditions (1)

2. Knowledge and skills of the provider: Inadequate knowledge and technical skills of service providers in management of HIV/AIDS in children was found to contribute to the disparity in accessing HIV medications between children and adults. (7) The great majority of the health workers had not had any training in an HIV/AIDS management area. Over 300 staffs have to be trained in each of the key HIV/AIDS care and treatment services. The training needs were uniformly distributed across all regions. (6)

3. Knowledge and skills of providers in psychosocial support: HWs reported barriers to Provision of psychosocial support were: (5)

 Lack of Pediatric Counseling skills especially disclosure to children.  Counseling space is not adequate, thus compromising on confidentiality and privacy. For instance, in Tororo Hospital, they counsel people under trees. In JCRC Fortportal, sometimes two people are counseled by one counselor in the same room because of lack of space. Generally counselors have a heavy workload.  In some centers, Counselors are volunteers and they need motivation

4. Communication abilities of the care givers: cultural and language barriers are barriers for good communication between providers and patients. Training of providers and patients in this regard is recommended (13).

5. Having a secondary (back up) informed caregiver (1)

6. Understanding of how the developmental stage of the child influences cooperation with treatment: this helps in planning and support for the process (1)

7. Beginning support early, before the initiation of treatment (1)

8. Developing an adherence plan (1)

7 9. Offering education to the child and the caregivers (1)

a. Initial education should include:

i. Basic information about HIV and its natural history

ii. The benefits and side effects of the medications

iii. How the medications should be taken

iv. The importance of not missing any doses

v. If the medication is taken with food, the consumption of all food is necessary to ensure the intake of the full dose

vi. For younger children it is also important to: practice tasting the medicine, practice measuring the liquids, and train the child in pill swallowing

10.Adherence is facilitated by providers who: (1)

a. Use practical aids: e.g. calendars, blister packs, labeled syringes or other facilitating presentations of drugs.

b. Use Fixed Dose Combinations (FDCs)

c. Fit the ARTs into the child’s and/or the caregivers lifestyles

d. If possible, match the drug regimen for children to the drug regimen of the adults in the same family

e. Are prepared for non-severe side effects.

11.Adherence is facilitated by providers who know how to measure adherence. Methods to measure adherence include: (1)

a. Quantitative methods: asking children or caregivers how many doses have been missed in the past3, 7, or 30 days. But this may be problematic as children or caregivers may learn of the social desirability of reporting complete adherence.

b. Qualitative methods: can be more effective in identifying barriers to adherence but can also be more time consuming.

c. Review of pharmacy records

d. Pill counts

8 e. Viral load measurements can be used to assess adherence but is expensive in low resource settings.

12.Providing ongoing support for adherence (1). Adherence should be evaluated at each visit and any identified barriers should be addressed (11)

13.Using Directly Observed Therapy (DOT) (1)

14.Availability of child counselors: All Units are deficient of Child counselors although most of them counsel children (5)

Health facility level barriers and facilitators to treatment adherence and service uptake include:

1. An uninterrupted supply of the ARTs in the facilities and the house is essential. This can be ensured by developing a well-functioning system for forecasting, procurement and supply management (1)

2. Lack of appropriate referral: although 29% of the facilities reported providing community based HIV/AIDS services through Home Based Care or Community Based HIV Counselling and Testing, only 17% had a formal functional referral mechanism in place and only 11% had links with other organizations for ancillary services. (6)

In order to improve early diagnosis and treatment of children, linking of children from PMTCT to care has to be strengthened. This calls for more recruitment and training of Staff (5). In 2007, the National Pediatric HIV/AIDS Care Survey on linkage with PMTCT and HIV services (5) found that:

 Only 17 (58.6%) reported linking of HIV exposed children with HIV care services.  Only 55% of government and 85.7% of PNFP reported linking exposed children to care.

3. The availability of youth-friendly services (YES) (2): Youth-friendly services are characterized by:

a. Staff who are sensitive to youth culture, ethnic cultures, gender, sexual orientation, and HIV status

b. Flexible hours, convenient locations, and walk in appointments

In 2007, the Uganda Service Provision Assessment (USPA) found that: (2)

9  Only 5 percent of facilities offer youth-friendly HIV testing services. However, among facilities with an HIV testing system, 22 percent offer youth-friendly HIV testing services.

 Youth-friendly HIV testing services are most common in hospitals and HC-IVs and in facilities in Kampala. Of the facilities with any YFS, 77 percent have at least one provider trained to provide youth-friendly services.

 Far fewer (13 percent) facilities have appropriate guidelines on site.

4. Inadequate and inappropriate health infra-structure: has been noted by Baylor International (7) as a contributing factor to the disparities in ART provision between children and adults with children receiving significantly less service. 5. External partnerships: In Uganda, the HC IV and III which were able to provide good services were depending on external support from partners. Therefore, partnerships with different organizations should be encouraged in order to improve services. PMTCT program needs to extend to the PFP Health Units (5)page 31 of the 2007 National pediatric HIV/AIDS Case Survey. 6. Lack of appropriate infrastructure and equipment: Infrastructure and equipment: The majority of the facilities had consultation rooms (60%) with visual and auditory privacy but in most cases, the counseling rooms shared the same space with other services. Over half of the facilities had separate rooms for HIV patients or run the other services on different days from the HIV clinic days. However, 55% did not have adequate space to accommodate examination tables and other patient furniture. The recommended clinical equipment was available in less than 15% of the facilities including the following; tape measure, weighing scale, height measuring instruments, Blood Pressure machine suitable for children, thermometer, dispensing equipment, or a light source (a torch). Thirty six percent had an accessible hand washing facility in the HIV clinic. (6) 7. Having clinical guidelines in the facility: (6)The following clinical care guidelines were lacking in more than 50% of the health facilities; WHO clinical staging, PMTCT, cotrimoxazole management, ART care and Opportunistic Infection management. Relevant patient education materials were available in only 24% of the facilities, especially so in the eastern and south-western regions. 8. Availability of Laboratory services: All the assessed health facilities were providing some laboratory services, including the rapid HIV test, TB sputum, malaria screening, HB, urinalysis etc. however, the majority (93.9%) were not providing all the necessary laboratory monitoring tests for HIV care. Although Routine Counseling and Testing (RCT) in the wards is key to identification of children infected with HIV/AIDS, only 7 facilities were providing it at the time of the assessment. Similarly, although the staffs knew about the Ministry of Health system for processing DNA-PCR tests, only a few were actually implementing it.

10 The facilities lacked CD4 count services, total blood count/CBC machine, viral load count and chemistry machines. About 50% did not have basic laboratory equipment like microscopes, centrifuge and refrigerators and the overwhelming majority of the labs were grossly understaffed and lacked laboratory data capture tools for the services provided. Accessibility to HIV laboratory test and monitoring services is further limited by lack of essential utilities like hydro-electric power source as was the case at Kihihi Health Centre IV. For laboratory services not readily available at the facility, there were no reliable patient referral mechanisms; patients were just referred and they never got feedback. (6) 9. Information, Education and Communication (IEC) for clients: The majority of the IEC materials were either on adult HIV care or in inappropriate languages for the local communities.(6) 10.Rights of clients: (6) Over 75% of the facilities had no support groups; post test clubs, youth clubs, caregiver clubs etc. and 76% stated that they did not provided a convenient services to clients. Only 12% displayed their sign posts to show the range of services and hours of operation and only 6% had a mechanism in place to regularly get clients views on the quality of its services. 11.Community linkage: (6)There was poor linkage between the facilities and the existing community based care groups with only 30% of the facilities reporting some formal linkages with PHA groups for psycho-social support and group counseling activities either at clinic or community level. Indeed over 75% of the facilities did not involve PHAs & Community Volunteers in the mobilization & delivery of community based services like Home Based Care (HBC). Only 4 health facilities had a community based services programme like HBC or Home Based HIV Counseling and testing Service and only four had trained community based agents to provide integrated home based management of paediatric HIV care and treatment services. Only 2 facilities Kalongo Hospital and Bukinda had mapped the HIV/AIDS needs as well as socio-economic needs of CLHIV for purposes of referral or linkages. The roles and responsibilities of community support groups were defined in Kagadi Hospital only. 12.Availability of data capture tools: It was noted that the majority of the facilities had the right tools but were not filling them in properly. Facilities in eastern Uganda have comprehensive data capture tools while in the North, North eastern, Western and south western regions tools are available but the capture of pediatrics variables is not done well. The commonest weaknesses as noted by the assessment teams included; stock-outs of data collection tools like the ART card, MOH Pre-ART and ART registers; duplications in the patients’ registration numbers due to poor sequencing/numbering in the registers; and some register were too old possibly due to poor handling with some pages missing. WHO

11 staging was particularly noted to be irregularly filled and where done it would be with inconsistencies. (6)

Quality of pediatric HIV services:

The 2007 National Pediatric HIV/AIDS Survey (5) used the Ten-Point-Package as the standard against which to examine the quality of HIV services care in Uganda. The 10 points and the findings were as follows:

1. Early confirmation of HIV: early diagnosis facilitates timely access to treatment and social and emotional support. In Uganda;

a. Although HIV testing is widely available, some Health Units fail to make early diagnosis because they run out of the test kits

b. Most of the DNA/PCR is not done on site, leading to delays in getting the results.

c. Poor linkages to care from PMTCT are a hindrance to early diagnosis. Even where linkages exist, there is high loss to follow up due to lack of male involvement and stigma.

d. Other problems with PMTCT reported included staff shortages, lack of training, lack of guidelines and stock out of test kits and drugs for prophylaxis

2. Monitoring of child growth and development:

a. Research Centres were the best in monitoring and monitoring went down with the lower levels. By type of facility,

b. PFP Units were not doing well in growth monitoring. Most of them use weights only.

c. Developmental Assessment was mainly done in research centers.

d. Low use of growth charts for growth monitoring in facilities (Less than 40%)

e. Low level of food demonstrations while educating clients – apart from research sites.

3. Immunization according to recommended national schedule:

a. Generally all levels and levels of Health Units were deficient of immunization in the clinic but PFP was the worst.

12 b. Having a section on immunization in the Clinical notes is a good reminder for the HWs to identify those who need it. However, this was found in only 8 (22.2%) of the Health Units.

4. Provision of prophylaxis for opportunistic infections

a. All the Health Units reported giving Cotrimoxazole prophylaxis to HIV exposed and infected children. However, some reported that they give it to only confirmed HIV infected children.

b. INH prophylaxis was lacking at all levels and types. Only 5 units reported identifying children who needed INH prophylaxis while only 3 give it. These included Kawempe Health Centre PIDC satellite, Bwizibwera HC IV and Kangulumira HC IV

5. Actively looking for and treating infections early

a. All the Health Units treat opportunistic infections. However, health workers complained about irregular supply and limited spectrum of drugs. They also lack Pediatric formulations.

6. Counseling the mother/care taker and family on optimal infant feeding, personal and food hygiene, and when child should be followed up according to the WHO recommendations a. Counseling on infant feeding reduced with the level of Health Unit b. Of the 27 Health Units which counsel about feeding, only 18 reported that the person who teaches them is trained in infant feeding or nutritional counseling. Only 9 of them conduct food demonstrations while educating clients. c. Feeding assessment took place in 20 out of the 36 Health Units involved in the survey. d. Other problems encountered include few trained staff in infant feeding/ nutrition and lack of logistics for follow up . 7. Conducting disease staging for the infected child: a. Most of the Health Units in the survey stage children’s HIV disease. Only 3 Government HC IIIs do not stage b. Regular staging was less in the HCIII and HCIV Units. c. Twenty seven (75%) of survey Health Units stage regularly, while 5 stage only at the first visit 8. Offering ARV treatment for the infected child (when needed) a. On average it is observed that over 50% of the facilities (including HC II) possess Nevirapine – probably in relationship to PMTCT program. 13 b. Over 60% of the research, regional and district sites have both the syrup and tablets. This picture is similar c. With Zidovudine, is noted to be significantly less available in regional sites with the syrup at regional sites (50%), and HC III for both syrup and tablets only in 16.7% of the facilities. d. Stavudine syrup is readily available in the higher level facilities. The lower level health facilities e. There is less stocks of alternate combinations – Kaletra (less that 50%), tenofivir, and didanosine paediatric preparations. f. These trends are mirrored by ownership – with the ARV supplies being more prominent among the PNFP compared to both government facilities and PFP.

9. Provision of psychosocial support to the infected child and mother a. Only 27 (75%) Health Units counsel children b. Only 69% had counseling guidelines and 21 (58%) had counseling notes.

Based on the above findings from the Ten-point package of quality of care, The 2007 National Pediatric HIV/AIDS survey recommends the following:

 The quality of services generally reduced with the level of Health Unit. There is a need for training Health workers about the standards of HIV Care among children in order to improve the quality of services.  Dapsone should be made available in all Health Units for children who are sensitive to Cotrimoxazole.  Immunization services need to be available in the Paediatric Clinic on all clinic days. A section on immunization in the clinical notes for children under 5 years would help pick up all those who need it.  Ministry of Health should ensure regular flow of test kits and drugs in order to avoid stock outs especially of ART.  Advocacy for Pediatric Formulations and variety of drugs for OI treatment is needed

Facts for life (2010) developed 10 key messages that every family and community has the right to know about HIV. These 10 messages are: (8)

Message 1: HIV (human immunodeficiency virus) is the virus that causes AIDS (acquired immunodeficiency syndrome). It is preventable and treatable, but incurable. People can become infected with HIV through (1) unprotected sexual contact with an

14 HIV-infected person (sex without the use of a male or female condom); (2) transmission from an HIV-infected mother to her child during pregnancy, childbirth or breastfeeding; and (3) blood from HIV-contaminated syringes, needles or other sharp instruments and transfusion with HIV-contaminated blood. It is not transmitted by casual contact or other means. Message 2: Anyone who wants to know how to prevent HIV or thinks he or she has HIV should contact a health-care provider or an AIDS centre to obtain information on HIV prevention and/or advice on where to receive HIV testing, counseling, care and support. Message 3: All pregnant women should talk to their health-care providers about HIV. All pregnant women who think they, their partners or family members are infected with HIV, have been exposed to HIV or live in a setting with a generalized HIV epidemic should get an HIV test and counseling to learn how to protect or care for themselves and their children, partners and family members

A pregnant woman infected with HIV needs to know that:  starting HIV-exposed newborns on cotrimoxazole or Bactrim between 4 and 6 weeks of age and continuing it until HIV infection can be definitively ruled out can help prevent ‘opportunistic’ infections (infections that take advantage of a weakened immune system)  there are various infant feeding practices, each with advantages and risks Message 4: All children born to HIV-positive mothers or to parents with symptoms, signs or conditions associated with HIV infection should be tested for HIV. If found to be HIV- positive, they should be referred for follow-up care and treatment and given loving care and support. To achieve this it is important to know that:

 The earlier a child is tested, diagnosed with HIV and started on HIV treatment, the better the chance of his or her survival and living a longer and healthier life.  The health-care provider should recommend HIV testing and counseling as part of standard care to all children, adolescents and adults who exhibit signs, symptoms or medical conditions that could indicate HIV infection or who have been exposed to HIV. HIV testing and counseling should be recommended for all children seen in health services in settings where there is a generalized HIV epidemic.  A child whose mother is known to be HIV-positive should be tested for HIV within six weeks of birth or as soon as possible. Infants have their mother’s antibodies for several weeks after birth, and therefore standard antibody tests are not accurate for them. A special polymerase chain reaction (PCR) test is required to tell if an infant has the virus around 6 weeks of age. If positive, the child needs to begin treatment immediately. The health-care provider can help the family set up

15 a feasible and appropriate antiretroviral therapy regimen for the child. The parents should receive counseling and social services.  An important part of HIV care and antiretroviral treatment (ART) for children is the antibiotic cotrimoxazole. It helps prevent ‘opportunistic’ infections related to HIV, especially PCP (pneumocystis pneumonia). This treatment is called cotrimoxazole preventive therapy, or CPT.  Children with HIV should be given ART in fixed-dose combinations. These can be prescribed by a trained health worker, who can also provide follow-up support. If the child is going to school, the school can also provide support to make sure that the child takes the medicines while at school.  It is critical to encourage children taking ART to keep taking the medicines on the recommended schedule. This will help ensure the treatment remains effective.  Children need a healthy, balanced diet under any circumstances, but when they receive HIV treatment, ensuring proper nutrition is especially important  HIV or opportunistic infections may cause reduced food intake due to decreased appetite, difficulty swallowing or poor absorption. Therefore, extra attention should be given to the nutrition of children who are HIV-positive to make sure they receive high-quality, easily digestible foods. Without proper nutrition, their growth and development can be hindered. This could lead to more opportunistic infections that further deplete children’s energy and increase their nutritional needs.  Once children who are HIV-positive are old enough to understand, they need to be involved in decisions about their medical care and support. They also should be made aware of the importance of prompt care and treatment of infections. This is a critical part of developing their ability to make healthy decisions in the future.

Message 5: Parents or other caregivers should talk with their daughters and sons about relationships, sex and their vulnerability to HIV infection. Girls and young women are especially vulnerable to HIV infection. Girls and boys need to learn how to avoid, reject or defend themselves against sexual harassment, violence and peer pressure. They need to understand the importance of equality and respect in relationships.

Message 6: Parents, teachers, peer leaders and other role models should provide adolescents with a safe environment and a range of life skills that can help them make healthy choices and practice healthy behavior.

Message 7: Children and adolescents should actively participate in making and implementing decisions on HIV prevention, care and support that affect them, their families and their communities.

16 Message 8:Families affected by HIV may need income support and social welfare services to help them take care of sick family members and children. Families should be guided and assisted in accessing these services.

Message 9: No child or adult living with or affected by HIV should ever be stigmatized or discriminated against. Parents, teachers and leaders have a key role to play in HIV education and prevention and in reducing fear, stigma and discrimination.

Message 10: All people living with HIV should know their rights.

Current interventions for pediatric HIV care in Uganda include: (9)

1. Capacity-building

 Adaptation of training materials for IMCI HIV course

 More training planned in paed. HIV care and counselling (MoH, PIDC)

 Regional paediatric mentors/supervisors have been trained (support from EGPAF and Regional centre for Quality of Care)

2. Early Infant diagnosis

 HIV counselling policy has been revised to address paediatric counselling challenges

 A countrywide program for DNA PCR currently is being rolled out

3. Access to early HIV care

 Septrin for prophylaxis is recommended for all children born to HIV positive mothers and other HIV positive children

 Strengthening of linkages between HIV care clinics and PMTCT services (EGPAF support

Current challenges for pediatric HIV in Uganda include: (9)

 Human resource and capacity-building constraints

 Few health workers trained to handle paediatric HIV care

 Few paediatric counsellors

17  Low public knowledge on availability of services for children

 Adherence issues

 Coverage for early Infant HIV diagnosis is still low

 Lack of appropriate replacement feeding for HIV exposed infants (80% of mothers opt to breastfeed, 20% replacement feeding)

 Linkage of infants and families identified under PMTCT to comprehensive HIV care is still limited

 Child/adolescent friendly services limited to centres of excellence (Mildmay, PIDC)

 Inadequate family/community support and follow-up for HIV positive children and their families

Current areas that require focus in pediatric HIV care in Uganda include: (9)

 Scale-up capacity-building efforts for paediatric HIV care and ART (IMCI HIV course, PIDC-Baylor training)

 Facilitate access to HIV care

 Strengthen linkages between PMTCT and HIV care clinics

 Scale-up Early infant HIV diagnosis and care (DNA-PCR)

 Avail convenient paediatric formulations - tablets, syrups

 Improve paediatric HIV care services (child/adolescent friendly)

 Community mobilization and sensitization

 Use of more effective regimens for PMTCT

 Use of family-centred approach to HIV care, strengthen family and community support for children

 Strengthen family planning services for HIV positive women

References

1. Antiretroviral therapy of HIV infection in infants and children in resource-limited settings: towards universal access. Recommendations for a public health approach. WHO 2006. 18 2. Uganda Service Provision Assessment Survey (2007). Key findings on HIV/AIDS and STIs.

3. HATiP. HIV & AIDS Treatment in Practice (2009). New WHO treatment guidelines.150.

4. Uganda National Advocacy Action Plan. Campaign to End Paediatric HIV and AIDS.

5. Tagoola A and Nabukeera N (2007). National Pediatric HIV/AIDS care survey.

6. Baylor-Uganda National Expansion Program (2008). A needs assessment Report for 32 health facilities assessed for readiness to start integration of pediatric and family HIV/AIDS in routine services Children’s Foundation

7. Baylor International Pediatric AIDS Initiative Last Updated: June 10, 2010. http://bayloraids.org/uganda/hiv.php

8. Facts for Life. 4th edition (2010).

9. Elizabeth N. key national issues on pediatric HIV and ART. STD/AIDS Control Program, MoH.

10.Antiretroviral therapy for HIV infection in infants and children: towards universal access (2010). Executive summary of recommendations. Preliminary version for program planning.

11.Schuval SJ. Pharmacotherapy of pediatric and adolescent HIV infection. Therapeutics and Clinical Management (2009) 5: 469-484.

12.Committee on pediatric AIDS, section on international child health. Increasing antiretroviral drug access for children with HIV infection. American Academy of Pediatrics (2007) 838-845.

13.Shah C. Adherence to high activity Antiretroviral Thearapy (HAART) in pediatric patients infected with HIV: issues and interventions. Indian Journal of Pediatrics (2007); 74(1): 55-60

14.Panel on clinical practices for treatment of HIV infection. Guidelines for the use of antiretroviral agents in HIV-1 infected adults and adolescents. Department of Health and Human Services (DHHS), December 1, 2009. Available from URL: http://AIDSinfo.nih.gov. Accessed on August 25, 2010.

19 List of Acronyms

AIDS Acquired Immune Deficiency Syndrome

ART Anti Retroviral Therapy

CEPA Campaign to End Pediatric HIV and AIDS

CPT Cotrimoxazole Preventive Therapy

DOT Directly Observed Therapy

DBS Dried Blood Spots

EGPAF Elizabeth Glaser Pediatric AIDS Foundation

FDCs Fixed Dose Combinations

HBC Home Based Care

20 IEC Information Education and Communication

HIV Human Immunodeficiency Virus

PCR Polymerase Chain Reaction

PEPFAR The President's Emergency Plan For AIDS

PMTCT Prevention of Mother to Child Transmission

PCP Pneumocystis Pneumonia

RCT Routine Counseling and Testing

UDHS Uganda Demographic and Health Survey

UHSBS Uganda HIV/AIDS Sero-Behavioral Survey

UNMICEF United Nations Children’s Fund

USPA Uganda Service Provision Assessment

WHO World Health Organization

YES Youth-friendly services