Pediatric HIV in the 1980’s was marked by stigma. Those of us working in this area were advocates along with the children who were infected because there were a lot of things we didn’t have. We didn’t have drugs. We didn’t have clinical trials. The children didn’t have a voice or a place at the table. Many children died within their first two years of life, and more before age ten. We have known since the beginning that untreated or ineffectively treated pediatric HIV has an extremely high morbidity and mortality rate.
Thankfully we don’t live in that world any longer. Results of the 076 clinical trial were published in The New England Journal of Medicine in 1994, showing the effectiveness of the antiretroviral drug zidovudine (AZT) for prevention of perinatal transmission of HIV. The results were astounding and reduced vertical transmission by two-thirds.
So by 1994, we had one thing: AZT to prevent transmission. Today we have effective preventive and treatment agents as well as implementation of “opt out” testing for HIV. This policy shift has dramatically improved the testing for, treatment of and prevention of transmission of HIV to babies, by relegating HIV diagnosis to standard of care for all and not just the stigmatized few.
There are likely fewer than 50 babies born each year in the US with perinatal HIV. But these are 50 failures of our systems.
It’s now been 30 years since the battle days of the eighties, but this epidemic is not gone. There are at least 11,000 people in the United States who are living with perinatally acquired HIV. These are the survivors — the children that didn’t rapidly progress and who kept their HIV at bay even without virally suppressive antiretroviral therapy (ART).
It is often wrongly assumed that since maternal transmission is largely prevented, that pediatric HIV is cured. There are likely fewer than 50 babies born each year in the U.S. with perinatal HIV. But these are 50 failures of our systems: these babies did not have to get HIV. The ask is now shaped by different needs — side effects of life saving medications can be profound and life altering, “every dose every day” is an incredible burden, and stigma still exists — all contributing to enormous mental health needs for these children.
The Pediatric HIV/AIDS Cohort Study (PHACS), a study of the National Institutes of Health, continues much-needed research by focusing on some of the remaining challenges and barriers to living a healthy life for youth who have been infected all their lives. Here’s what our patients battle today:
- Knowledge sharing. When should young patients become aware of their HIV and when do they share that information with others if at all?
- Acceptance and adherence. We still face barriers to ART adherence among adolescents and young adults around issues of stigma and disclosure.
- Transition to adult care. It’s not as easy as walking across the street to the adult clinic. For many youth, their pediatric care team is their family too, often their only surviving family. It must be a process.
- Mental health services. The needs are astonishingly high and we have far fewer options for mental health services for anybody over 18 than for children. The needs do not stop with the 18 candle birthday.
- Metabolic disorders. We need to get answers to understanding the metabolic disorders such as diabetes we’re finding in children on ART, and to offer the best treatment and prevention.
- HIV transmission. Young people have always had sex and will continue to have sex; those with HIV are not different from their peers. We need to educate our youth on HIV prevention and discover breakthrough strategies that enable youth with HIV to lead healthy lives.
At Boston Children’s Hospital, we care for approximately 100 of the 315 people living with perinatal HIV in Massachusetts. That sounds like a tiny number compared to the world and compared to the adult population, but every person we see is a person we can’t give up on.
Sandra Burchett, MD, MSc, is the director of Children’s Hospital AIDS Program (CHAPS) at Boston Children’s Hospital. This is an excerpt from her presentation on World AIDS Day, co-sponsored by the Harvard School of Public Health and Boston Children’s Global Health Program.
Visit the World Health Organization (WHO) for key facts about the current state of HIV/AIDS.