Taking Action on Better Treatment for Children Living with HIV

Children living with HIV currently have to wait many years to access the best new antiretroviral medicines (ARVs) being developed for adults. This is simply unacceptable. And a variety of actors – from pharmaceutical companies to government regulators – can and should take action to accelerate this onerous process. These were the conclusions of the High-Level Dialogue on Scaling Up Early Diagnosis and Treatment of Children and Adolescents, which took place late last month at the Vatican, convened by His Eminence Peter Appiah Kodowo Cardinal Turkson, Prefect of the Dicastery for the Promotion of Integral Human Development, in collaboration with PEPFAR, UNAIDS, Caritas Internationalis, World Council of Churches-Ecumenical Advocacy Alliance, World Health Organization (WHO), and the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). The meeting ended with the adoption of a 40-plus point Action Plan of commitments to focus, accelerate and collaborate on pediatric HIV diagnosis and treatment, which was made public on World AIDS Day.

Since effective ARVs were first developed in the mid-1990s, it has taken approximately 8-10 years for each new drug to be ready for use by children. As with any medicine, adult versions almost always come first given the larger financial incentives of a bigger market and the additional safety and efficacy concerns for children. Clinical trials for children are also expensive and time-consuming, with separate trials needed to cover age groups from adolescents down to newborns. The problem is accentuated for children living with HIV, who live primarily in sub-Saharan Africa and make up a relatively small, poor, and fragmented market. Additional time is needed to make palatable and user-friendly pediatric formulations and then for each country to approve, introduce, and make available the new drugs.

This multitude of financial, technical, and bureaucratic challenges has meant that the 2.1 million children living with HIV are mostly making do with older, less effective treatment options. The treatment they can access is often bitter tasting, difficult to administer, requires refrigeration or clean water, and can have toxic side effects for growing bodies. And the youngest and most vulnerable children must wait the longest for trials to finish and appropriate formulations to be developed. This makes it harder for children to start and stay on treatment, creating an urgent situation that could lead to severe illness or death.

Fortunately, a new “coalition of the willing” was formed in Rome on November 17th to tackle these issues. Stakeholders representing drug research, development, approval, and uptake committed to an Action Plan to accelerate processes and work together in a more efficient, focused, collaborative, and transparent manner. Energy and optimism infused the discussions, as participants put forward significant new proposals and pledged related concrete action steps. The Action Plan also addressed faster access to new pediatric diagnostic technologies, which are critical to identifying children needing treatment.

Earlier this week several key stakeholders from the Rome meeting met in Abidjan, Cote D’Ivoire in advance of the ICASA meeting for a full day of collaboration devoted to accelerating scale up of timely diagnosis and treatment for children and adolescents living with HIV. Led by EGPAF and WHO, representatives from PEPFAR, UNICEF, UNAIDS, UNITAID, World Council of Churches, the Clinton Health Access Initiative (CHAI), PATA, Viiv Healthcare, and others joined Ministry of Health leadership from over 15 countries across the African continent to share best practices and learning, identify bottlenecks and challenges and commit to a clear way forward, including around the Action Plan.

As Co-Chairs of the AIDS Free Working Group of Start Free, Stay Free, AIDS Free, a global framework that seeks to nearly double the number of children living with HIV on treatment by the end of 2018, EGPAF and WHO will work to harness the energy of the Rome consultation as well as the ICASA pre-meeting to urgently accelerate action. With so much at stake, EGPAF is determined to to translate the momentum of the meeting into concrete actions in the coming months and beyond.