By Eliane Drakopoulos of Elizabeth Glaser Pediatric AIDS Foundation
During a recent trip to Mozambique, I met a young doctor working at a clinic that treats HIV-positive children in Maputo. She said that one of the biggest daily challenges she faces is ensuring that the children have access to the medications they need to stay healthy.
“One of our biggest problems is keeping kids on HIV treatment,” the doctor told me with evident sadness and frustration. “Many of them come to this clinic completely alone, some walking more than 10 km, and they are only ten years old.”
Parents often can’t afford the time or the bus fare to take their HIV-positive children to monthly clinic visits to retrieve vital HIV medication. We have the science and the medicine to help these children, yet they continue to die needlessly due to lack of access to care.
Thirty years into the HIV/AIDS epidemic, we have greatly increased the number of people who receive affordable treatment. This is certainly something to proud be of, but our work is far from complete.
Children left behind
One of the most under-reported tragedies of the HIV epidemic is that children continue to be left behind in the HIV response. In 2012 alone, approximately 210,000 children died from AIDS-related illness, 575 children each day.
More than 90 percent of HIV-positive children are infected through mother-to-child-transmission during pregnancy, delivery, or breastfeeding. However, about 40 percent of pregnant women living with the disease still do not have access to the necessary medicines to prevent transmission of HIV to their child.
For these children, early diagnosis and timely access to appropriate medicine is crucial to ensuring their survival. Without access to those vital drugs, about half of those babies infected with HIV will die before their second birthday, and 80 percent will perish before they reach the age of 5.
This is why the World Health Organization recently recommended that all HIV-positive children younger than 5 start antiretroviral therapy immediately upon diagnosis–regardless of clinical symptoms, immune status or viral load. But the sad fact is that we are very far from reaching that goal. In fact, for all the success we have had in treating adults, the rate of children receiving HIV treatment continues to lag.
In 2012, 64 percent of adults who required ART got it, but only 34 percent of children did. Even worse, in five priority countries less than 5 percent of children received early infant HIV diagnostic services.
There are many barriers that prevent infants and children living with HIV from getting proper diagnosis, treatment and care in resource-limited settings like Mozambique.
Weak health systems, lack of medical personnel trained in treating children, stock-outs of critical medications in countries with high HIV prevalence rates, lack of money for transportation, fear of stigma — these are all a big part of the problem.
Another serious problem is the lack of good treatment options for children. Many medications are either not being studied for pediatric care or have been found to be unsafe for children. Of the pediatric formulas available, many are unpalatable or difficult for young children to swallow, and some require refrigeration, a resource unavailable to most caregivers in developing countries.
Finally, most pharmaceutical companies — including those that manufacture generic formulas — do not see a return on investment in pediatric HIV medicine.
Since HIV infection in children has been virtually eliminated in the United States and Europe, and prevention of mother-to-child transmission of HIV services are becoming increasingly available in the developing world, pediatric ART demand is expected to decline over time, which is seen by some as a disincentive for pharmaceutical innovation that helps HIV-positive children.
Time to act
At the Elizabeth Glaser Pediatric AIDS Foundation we are working to ensure that children are a part of the global effort to eliminate HIV/AIDS. But the international community can and must do more to both prevent children from acquiring HIV, and effectively treat and care for those who do acquire the virus.
Governments must prioritize early HIV diagnosis, treatment, and care for children, and also tackle the key barriers to effective diagnosis and treatment of HIV in children. The pharmaceutical industry must develop less expensive fixed-dose combination drugs suitable for infants and children living in resource-poor settings and make necessary pediatric medicines locally available at the lowest possible cost.
According to UNAIDS, “overwhelming evidence indicates that rapidly scaling up quality-assured HIV treatment will prevent millions of people from dying, prevent millions of people from acquiring HIV infection, save money and lay the foundation for the end of the AIDS epidemic.”
Let us ensure that children are a part of that equation too.
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