V. Treating Children with HIV/AIDS


Even when children are diagnosed with HIV, the barriers to treatment are significant. In the developing world, there is limited infrastructure and a lack of trained personnel to address the special needs of children. If special pediatric formulations are available, they are expensive and complex to use. In addition, children require a wide range of social services to ensure that they are able to live relatively normal lives.

Support for pediatric ART

KEY FOCUS COUNTRY TREATMENT RESULTS (as of March 2005):
Children receiving ART in September 2004: at least 4,800
Children receiving ART in March 2005: at least 9,500

Considering that support for treatment of pediatric AIDS was virtually non-existent two years ago, the Emergency Plan has made significant early progress in supporting ART and other HIV care to children in the 15 focus countries.

In FY2004, the Emergency Plan supported pilot programs focusing on pediatric HIV/AIDS in several countries, including Uganda, Namibia, Zambia, South Africa and Botswana. These programs are being scaled up in FY2005, and in FY2006 all Emergency Plan focus countries will have programs supporting treatment of pediatric AIDS and will be working to meet established targets.

As of March 31, 2005, working with partners on the ground in the focus nations, the Emergency Plan supported ART for 235,700 adults and children. Of this number, at least 161,000 people were receiving treatment in programs that received downstream support from the Emergency Plan. Because the Emergency Plan is the only organization to require reporting by age, age data are available only for sites receiving downstream support. Even so, as of March 2005, not all sites receiving downstream support were able to report the age of their clients. The ages of 133,000 of the 161,000 are known, and of those, approximately 9,500 (7 percent) are children under 15. This represents a sharp increase in the number of children receiving support for treatment in only six months (from approximately 4,800 children in September 2004).

Zambia: Coordinated, comprehensive care for children

In Lusaka, Zambia, over 1,450 children infected with HIV receive care in an Emergency Plan-supported program that operates at 18 sites. HIV care for these children includes intensive clinical and immunologic monitoring (including CD4 count), prevention of opportunistic infections, nutritional assessment and management, assessment and management of disease manifestations, and, when necessary, antiretroviral therapy. To date, 845 children have been started on ART. What they receive is actually more than just clinical care -- it is coordination of medical and supportive services and communication among providers and families that optimizes their health and well-being. Different members of the team have different �pieces of the puzzle.� This approach considers the needs of all family members and the linkages among individuals, families and communities. This family care coordination promotes better care, supports adherence, and empowers patients and families. Many of the children are able to go to school and lead relatively normal lives.

[Editor's note: The following table also is available as text-only.]

Table 7: Children (0-14 years) receiving downstream support for treatment through the Emergency Plan,
2004-2005

Timeframe

As of September 2004

As of March 2005

 

2004 downstream results

2005 mid-year results

Botswana

0

0

Cote d'Ivoire (a)

600

300

Ethiopia

0

0

Guyana

12

32

Haiti

0

300

Kenya

300

900

Mozambique

13

300

Namibia

700

1,200

Nigeria

0

53

Rwanda

300

600

South Africa

400

1,300

Tanzania

100

400

Uganda

2,300

3,400

Vietnam

0

0

Zambia

100

700

All countries

4,800

9,500

NOTES: Age data are only available for individuals receiving treatment through downstream, site-specific USG support. Because some health facilities have not updated their information systems to report age data for ART clients, this table may underestmate the number of children currently on treatment.
(a) In 2004, Cote d�Ivoire�s reporting included persons also supported by the MOH (about 76% of those reported). In FY05, numbers reported do not include those on treatment at MOH sites.

Emergency Plan service delivery interventions have provided multisectoral support for host nations to build and improve health infrastructure, supported training in pediatric HIV care and treatment (including developing family-centered HIV care and treatment models that include children), and provided upstream and downstream support for ART using the network model of care.

Guyana: Starting pediatric treatment

Access to life-saving treatment is relatively recent in Guyana, and until 2005 only adults were receiving ART. In 2004 the U.S. Government entered a partnership with the Government of Guyana (GOG) to begin treating HIV-positive children. The first step included a collaboration among the Guyana Ministry of Health (MOH), the Emergency Plan, and the Canadian International Development Agency (CIDA) to develop national guidelines for pediatric treatment. These guidelines were completed in December of 2004, and tailored to meet country-specific needs.

Once the guidelines had been finalized, the identification and forecasting of children in need of treatment began. In addition, service providers at the two main ART sites in the country, Mercy Hospital and the Genito-Urinary Medicine (GUM) Clinic, were trained to provide pediatric treatment following the newly developed national guidelines. The comprehensive training included a variety of service providers, such as doctors, nurses, counselors, and pharmacists.

Mercy Hospital and the GUM Clinic both follow a family-centered care model, treating parents and children jointly. Counseling, follow-up, and psycho-social support are all offered in the family context to both children and parents. This reduces the number of visits to the clinic for a given family, and increases adherence rates for all family members.

To date, Guyana has been able to provide ART to 27 children, with an expected total of 85 by the end of the year -- over 10 percent of the estimated number of children living with HIV/AIDS in the country. In FY2006 the pediatric treatment program will be expanded further to meet the needs of all children who can benefit from life-saving treatment.

In addition, the U.S. Government is a major participant in global efforts to improve treatment for children, working closely with WHO and UNICEF to develop and review new treatment guidelines, improve monitoring systems, and ensure the availability of appropriate pediatric ARV formulations.

Support for comprehensive pediatric preventive care

Caring for children is not limited to antiretroviral treatment. Comprehensive care must include a set of preventive care services. Children who require HIV care fall into three categories: children receiving ART; children who are HIV-positive but may not yet have access to or need for ART; and children whose HIV status is unknown but who have been exposed to the virus, including those with symptoms of HIV or other medical problems.

The Emergency Plan supports a comprehensive set of services, known as the �preventive care package,� that can help to delay disease progression, preventing illness and death. These prevention services are important because up to 75% of HIV-infected infants develop symptoms in the first two years of life which are associated with infections for which effective preventive interventions are already available.

The precise elements of a preventive care package are highly dependent on the country context, but typically include elements of:

  • Cotrimoxazole prophylaxis to prevent opportunistic infections and diarrheal diseases
  • Screening for opportunistic infections and illness (tuberculosis, malaria, pneumonia, diarrhea, etc)
  • Growth and development monitoring
  • Long-lasting insecticide-treated bednets (LLITN) to prevent malaria
  • Safe drinking water and nutritional support

In the short term, the preventive care package can greatly mitigate needless pain and suffering on the child�s part. In the long run, it carries a relatively low cost, and has the potential to reduce the burden placed on health systems through early intervention and care. It also facilitates linkages with other essential programs and services.

Uganda: Combating HIV/AIDS in rural Uganda � a family affair

In Uganda, the Emergency Plan supports the Pediatric Infectious Disease Clinic (PIDC) at Mulago Hospital. The focus of the project is support, prevention, care and treatment services for the whole family. As part of this and other U.S.-supported programs in Uganda, support is provided for family counseling and testing so that people have increased access to HIV testing services.

Family testing is important because Ugandan studies have shown that 99% of the children in households of people with HIV have never before been tested, and 41% are eligible for ART.  Additionally, U.S.-supported programs of The AIDS Support Organization (TASO) have shown that 60% of spouses of people with HIV also have HIV, and the vast majority have never before been tested.

At PIDC, the basic palliative care and support provided to children and adolescents attending the clinic includes monthly follow-up to monitor disease progression. This care and support is addressed through the PIDC's Pediatric HIV 10-point management plan, which includes:

1. Early diagnosis of HIV
2. Cotrimoxazole prophylaxis for prevention of opportunistic infections and diarrheal diseases, and where appropriate, prophylaxis for tuberculosis
3. Growth and development monitoring
4. Immunization, nutritional education, supplementation, and support, including multivitamins and iron
5. Routine quarterly de-worming with mebendazole
6. Aggressive management of acute illnesses
7. Psychosocial support and palliative care
8. Adolescent care and support
9. Family-focused care including prevention of mother-to-child transmission
10. ART when indicated and available

Other examples of U.S. Government support for children living with HIV/AIDS include the following.

� In C�te d�Ivoire, South Africa, Tanzania, and Zambia, the delivery of comprehensive pediatric AIDS care and treatment services includes early confirmation of infection, complete immunization, and monitoring of the child�s growth and development. The mother and family are counseled on nutrition, and psychological support is offered. Where possible, PMTCT and maternal-child health clinics are integrated and care for most children younger than 5 years occurs in well-child clinics.

� In Nigeria, the early identification of children with HIV is linked to PMTCT services to provide a continuum of care, and women are encouraged to enroll themselves and their children in both programs. Quality control focuses on adequate time for each patient visit, as well as a computer check on all pediatric ARV doses based on weight, height, and body surface area, with direct feedback to the prescribing clinician.

� In Tanzania, a family approach model is encouraged via proactive networking with antenatal and PMTCT clinics. Clinics use appointment systems to ensure quality control with adequate time for clinical examination and counseling. Additionally, children and pregnant women bypass the appointment queue and are seen the same day. There is a strong home-based care unit for follow-up with 3 nurses at each site and 68 home-based care providers in Dar es Salaam.

� The Emergency Plan is supporting a targeted evaluation to develop improved therapeutic feeding options for HIV-positive infants of seropositive mothers. Severe wasting is common in HIV-positive children 6-24 months of age, in those who are not breast-fed, and in infants who receive mixed feeding. Severe malnutrition, in turn, is associated with a marked increase in mortality. This targeted evaluation will investigate the best options and protocols for therapeutic feeding of children infected or affected by HIV/AIDS.

Support for pediatric drug formulations

Insufficient supplies of HIV/AIDS drugs for children poses a major constraint.  ARVs are often formulated for adult patients.  However, young children have difficulty swallowing pills and may require more flexible formulations for the weight-based dosing used in pediatrics. Pediatric formulations of branded ARVs are also generally three to four times more expensive than adult formulations, and complicated by the fact that each one comes with its own measuring requirement, teaspoons and mixing equipment.  This is difficult for both health care providers and caregivers.

For adults, some of the complexities of treatment have been addressed through fixed-dose combination (FDC) and co-packaged drugs. However, there is considerable concern as to whether these are appropriate for children, who are growing and changing weight. Because of the need to dose pediatric HIV therapies according to weight or body surface area, it is useful to have single-entity products in child-friendly formulations that could be co-packaged. International pediatric HIV experts have requested expedited development of chewable, liquid dispersible tablets or pre-packaged powders (sachets) of ARVs in appropriate pediatric doses.

The U.S. Department of Health and Human Services/Food and Drug Administration (HHS/FDA) has established a �fast track� process for tentative HHS/FDA approval for generic ARVs, making them eligible for purchase under the Emergency Plan.  The fast track process is working and twelve non-branded products have received tentative HHS/FDA approval, including one pediatric formulation.

To address the need for high quality, inexpensive and simple-to-use pediatric formulations, the Emergency Plan has formed an inter-agency technical working group focused on issues related to ARV procurement and logistics. During FY2005 and FY2006, the working group will promote treatment for children through such activities as advocacy and dialogue with drug manufacturers to promote rapid development of child-friendly formulations.

At the international level, the Emergency Plan has participated with WHO and UNICEF in advancing the pediatric and PMTCT agendas. Efforts in 2005 have included international conferences and joint visits to focus and non-focus countries to identify and address country-specific issues related to pediatric ARV formulations.

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