Achieving an AIDS-free generation: Don’t forget children living with HIV

The Hill | December 6, 2012

TheHill.com republished an opinion piece by Foundation CEO Charles Lyons and Keep a Child Alive CEO Peter Twyman urging renewed focus on eliminating pediatric HIV/AIDS.

After more than three decades of the AIDS epidemic, today we are talking about the end of AIDS – in our lifetimes.

This is an exciting moment made possible by tireless advocacy efforts, lower HIV drug prices, significant research strides, and an unprecedented international response. Our collective efforts have led to expanded global access to HIV care and treatment and improved capacity at all levels. New infections are decreasing and more people are receiving treatment to live longer, healthier lives.
But as we set our sights on an AIDS-free generation, we must once again ensure that children currently living with HIV are not left behind.
We have reason to celebrate the recent progress and momentum toward ending all new HIV infections in children. By stopping mother-to-child transmission of the virus, we’ve virtually eliminated new cases of pediatric HIV in high-income countries. We’ve also made incredible progress in resource-poor settings in just the past decade, largely made possible by funding from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the Global Fund to Fight AIDS, Tuberculosis, and Malaria, civil society, and importantly, political will and mobilization of resources at the national and community levels.
 
As a result, more than half of pregnant women living with HIV are currently getting the medicines and services to prevent HIV transmission to their babies and maintain their own health – and many countries at the heart of the epidemic in sub-Saharan Africa are getting closer to achieving universal coverage for pregnant women. We can realistically envision a generation born free of HIV, with an ambitious goal to end mother-to-child transmission completely by 2015.

Unfortunately, we’re not seeing the same level of progress with access to services for children who are already living with the virus. Since 2005, the number of children living with HIV receiving lifesaving treatment has quadrupled. But still, only 28 percent of the nearly two million children in need of lifelong HIV treatment are getting it.
For children, access to HIV treatment is an urgent matter of life or death. Without it, half will die by the age of two, and 80% by the age of five.

There are many reasons that HIV care and treatment for infants and children lags behind that of adults. These challenges are complex and disparate, and can vary widely among regions, countries, and even individual health facility settings.

The first step to getting a child on treatment is diagnosis. Weak health and laboratory systems, a limited number of qualified health care workers skilled in pediatric testing, and the stigma around the possibility of having an HIV-positive child often mean that many infants simply are not being tested for HIV.

Barriers to linking a child who is found to be HIV-positive to care and treatment also pose challenges, including the effects of stigma and fear, services that do not cater to the entire family’s needs, and structural issues facing poor families, such as the high cost of transportation.

Once linked to care and treatment, children and families still face challenges. HIV drugs are often not formulated for children or easy for caregivers to administer. Their foul taste, frequent dosage, and confusing directions can lead to poor adherence resulting in complications and potential drug resistance. We know what works for kids, but we need to do a better job of sharing best practices related to identification and treatment of children living with HIV. Doctors, nurses and counselors, often lacking formal pediatric training, are left using anecdotal evidence to make treatment decisions.

Despite the challenges, there are reasons for optimism. The United Nations-backed Global Plan to end new HIV infections in children and keep their mothers alive and healthy demonstrates a renewed commitment and focus on children and families affected by HIV. We’re seeing the public, private, civil society and scientific communities working together to support the plan, and to find new answers, models, and more effective treatment options for infants and children. There are also continued efforts to care for the millions of children who have been orphaned by AIDS.

On the heels of World AIDS Day, let’s not forget the needs of children living with HIV globally. As we work toward virtual elimination of new pediatric infections, we can also give children, mothers, and fathers living with or affected by HIV the hope of many more birthdays to celebrate.

Lyons is president and CEO of the Elizabeth Glaser Pediatric AIDS Foundation and Peter Twyman is CEO of Keep a Child Alive.