Policy: Growing Up with HIV

Foundation Ambassador Ben Banks speaking before an FDA panel


Last Friday, Foundation Ambassador Ben Banks spoke about his unique experiences as a pediatric HIV patient who has transitioned into an adult patient.

The meeting was part of the FDA’s Patient Network on how patients define benefts and risks in the drug development process. It was attended by many patient advocates and members of the scientific and pharmaceutical community, and was an opportunity to discuss the drug, device, and biologic development process – particularly how risk/benefit frameworks are used to bring products to patients.

The meeting also served as a forum for patient advocates to give feedback to the FDA.

Ben used an anecdote to describe some of the challenges for pediatric patients to adhere to their medications. Not long after he was first diagnosed with HIV, his mom came in and woke him up from a deep sleep. She asked him if he had taken his medication, after seeing that the bottle’s seal was unbroken.

When he admitted that he hadn’t, she told him, “If these pills don’t kill you, I will.”

Ben got a big laugh from the audience when he noted that at that moment, he suddenly understood the risks and benefits of taking his medication.

He followed up with a discussion of serious issues for children and parents, such as drug development and patient adherence to treatment. He noted that children should continue to be prioritized in the drug development process, with special attention paid to how they are administered their medications. Kid-friendly formulations – such as a liquid or “sprinkles” to put on food – can make a big difference in helping children take potent antiretroviral medicines.

Another issue that he highlighted was that children are often not making the decisions for themselves. Instead, a parent or guardian has to weigh the risks and benefits of care – and they may be more risk-averse in making decisions regarding the care of their children than if they were making the decisions for themselves.

Consequently, it is important for doctors to communicate effectively with parents and guardians, as well as with their patients.

Moreover, physicians and caretakers must consider issues such as the long-term effects of antiretroviral drugs when choosing a course of treatment for children.

Now in his thirties, Ben is among the first generation of children to have grown up with HIV. He was infected in 1981 at the age of two, after multiple surgeries and blood transfusions to combat cancer.

There is still a lot of research that needs to be gathered on patients like him who have been on antiretroviral drugs since childhood, and have since transitioned into adult care for HIV.

Ben and the Foundation look forward to continuing our work with the FDA’s Patient Network to highlight issues for pediatric patients, and to help a new generation of children who are also now growing up with HIV.

Katie Lapides Coester is a Public Policy Officer for the Foundation, based in Washington, D.C.