This week, scientific leaders from around the world will gather virtually at IAS 2021— the annual conference of the International AIDS Society—to discuss the latest innovations in HIV/AIDS research.
The meeting comes on the heels of exciting news just announced by Johnson & Johnson and the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) about their New Horizons Collaborative. First launched in 2014, the program provides second- and third-line medication donated by Johnson & Johnson to children with HIV, free of charge, in 11 countries in sub-Saharan Africa, where 90% of all children under 15 years of age living with HIV in the world reside. (These medications are often necessary when children develop resistance to first-line HIV therapies, in part because of their high viral loads at time of first treatment; in fact, children in low-income countries tend to develop HIV drug resistance more rapidly than adults.)
Now, New Horizons will be continuing the program through at least 2025 with the support of Johnson & Johnson, EGPAF and others. All current and future enrolled patients will receive donated medicines from Johnson & Johnson until 24 years of age, at which point they’ll be transitioned to existing national treatment programs for adults living with HIV.
As of October 2020, New Horizons has reached approximately 1,400 children with critical medicines and trained more than 4,000 healthcare workers in helping to better care for young people with HIV.
Based on program learnings thus far, New Horizons will also offer governments additional aid to address the causes of treatment failure in children through supply chain initiatives that will forecast local drug demand more accurately.
As of October 2020, New Horizons has reached approximately 1,400 children with critical medicines and trained more than 4,000 healthcare workers in helping to better care for young people with HIV. The initiative has also developed five technical tools to make managing treatment failure, drug dosing and other parts of the job easier to navigate.
And with the help from New Horizons, participants who switched from first- and second-line HIV treatments to third-line treatments achieved suppression of the virus at higher rates than national averages.
“Lifesaving” is how Dr. James Wagude, a physician who has treated children with HIV in Kenya for 17 years, describes these developments. And on a Zoom call, Dr. Wagude is all smiles, even after a long day’s work helping his young patients tackle enormous medical and societal obstacles.
“A positive attitude comes with the territory,” he says with a laugh. “When you deal with children and adolescents you learn how to have patience and encouragement. And you learn to smile, because children like happy doctors.”
Indeed, Dr. Wagude puts a determined, hopeful—and, sometimes, a justifiably worried—face on the daunting task of treating children living with HIV. As the International AIDS Conference kicks off, he shares his history of battling tough diseases, the additional challenges COVID-19 has brought to the fight against HIV and how he continues to maintain heart and optimism for the future of the children he treats.
Dr. James Wagude: “I became a doctor because—well, my mother says she had an insight into what all her six children would become when she named us, and I was the only one she named after a relative of ours who was a famous doctor!
I have been the chair of the HIV Clinical Technical Working Group in Siaya County, in the western part of Kenya, since 2014, and I feel it is the most important thing I have ever done. We provide technical support, mentorship, training and case review for healthcare workers on the ground who are treating HIV patients.
The Demands of Treating—and Parenting—Children With HIV
It has always been challenging to work with HIV, especially in children and adolescents—far more challenging than working with the other diseases I have professional experience with, including tuberculosis, leprosy and lung disease. And a main reason is young patients have all the growing pains of being an adolescent—and they also have the challenge of having HIV while going through this sexual development. They have all these changes in their bodies. They want to experiment. They want to date. And their peers see them differently when they know their status.
And perhaps the most frustrating thing is that young people with HIV depend on guardians to give them medication, because successfully administering medication depends on the guardians having a positive attitude about the illness—and a willingness to be open about their own health.
One of the most difficult things about being the parent of an HIV-positive child is when they ask how they got HIV. The parent often has to explain, ‘You got it from me,’ if that is the way it was passed down. Then the child’s next question to the parent is, ‘Where did you get it from?’ So there can be a difficult discussion: ‘How did it happen? What did you do wrong?’ A lot of parents shy away altogether and tell their children they have tuberculosis or asthma instead.
Many children handle the news of their diagnosis well, but others react negatively and even destructively with the medication, whether they take it incorrectly or even throw it all away in reaction to hearing the news about their HIV status. That can often happen if parents delay telling them the truth and they later look up their disease online. We try to tell parents, ‘It’s not wrong to tell your child the truth. Do not feel guilty about discussing it.’
But that challenge is what makes the work I do so important. I really enjoy talking to patients, which is very important with adolescents. I do in-school education, where we teach children and teens about HIV. We give them take-home kits so they can test themselves if they’re engaging in sex. And we also help to provide mentorship to healthcare providers so that they can counsel and educate young patients.
My work has taken me to many places—China, France, Haiti, Spain, Thailand and the U.S. I recently did an HIV workshop in New York. It was great to be in the Big Apple. I spent time in Brooklyn and met adolescents whose stories were the same as ours in Kenya: They were struggling with parents who didn’t understand them, struggling to deal with peers who wanted them to have sex, struggling to deal with taking these drugs every day—and to be accepted by themselves and by their community.
HIV is becoming a forgotten disease—and that is one of my big worries. If we didn’t have the New Horizons pipeline, Kenyan children could lose hope. During the COVID-related delay I’d see it in their faces: ‘What will happen to me if the drug I need is not available?’
The High Consequences of Going Without Crucial Treatments
So, yes, pediatric HIV is a universal situation. But Kenya faces particular challenges. In sub-Saharan Africa, there are approximately 1.7 million children under the age of 15 living with HIV/AIDS. Kenyan children, for many years, were unable to access two key antiretroviral medications due to the high cost of the medications. So young people with high viral loads were kept on failing regimens for long periods of time. When that happens, a child can die—and some children have died.
Meanwhile, the COVID-19 pandemic put a lot of constraints on health systems delivering HIV care. Attention shifted toward COVID in most countries, including countries receiving HIV drug donations, and less attention and fewer resources were directed at HIV.
HIV is becoming a forgotten disease—and that is one of my big worries. If we didn’t have the New Horizons pipeline, Kenyan children could lose hope. During the COVID-related delay I’d see the question in their faces: ‘What will happen to me if the drug I need is not available?’ It was heartbreaking.
But then there is a more hopeful story that I keep in my mind.
Very early in my practice, in 2006, when I was coming out of my internship, I was at an HIV clinic and one of the patients was a young teenager who had acquired HIV through sexual abuse.
She didn’t do well on her first HIV treatment regimen, so we had to switch her to a second-line treatment. She asked me, ‘What will become of me because I am HIV-positive? What kind of life will I have? Who will share their life with me?’
I remember telling her, ‘HIV cannot limit you. You can do anything you want.’
She asked me, ‘You mean I can be a doctor?’
I told her, ‘Why not? Anything is possible for you as long as you can get drugs and your viral load is suppressed.’
The young girl actually turned her life around. She got into medical college in Tanzania. We organized a way to get her drugs that could last her for six months, and we gave her a once-a-day regimen that she could easily take.
The last thing I remember telling her is: ‘Focus on your education. Don’t get distracted. I want you to come back and mentor the young adolescents we treat because you’re someone they can look up to.’
So she came back. She works as an HIV doctor and has two babies who are both HIV-negative. And she said that the encouragement she got at our clinic made a difference in her life. Stories like these are just one reason I am very happy that Johnson & Johnson is continuing with New Horizons.”
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