South Florida's HIV dilemma: How to prevent babies from being born with the disease

As the international community observes World AIDS Day on Friday, doctors in South Florida confront a challenging reality: More women locally are getting HIV. A percentage of those women will become pregnant and give birth to babies who are infected.

"We know how to prevent HIV in babies," said Dr. Lisa-Gaye Robinson, HIV medical director and principal investigator for clinical research at Broward County's Children's Diagnostic & Treatment Center. "We just need to find the pregnant women who are infected, get them into care, and on medications so the virus is undetectable."

For women, the stigma prevents many from being tested and treated, Robinson says.

At Broward's CDTC, 608 women, children and infants with HIV are being treated. Social workers encourage the pregnant women to attend prenatal care appointments and take their medications to prevent babies from being born with HIV. They also take the women to doctor's appointments and keep in contact with them throughout pregnancy.

Robinson said the center's vigilance with its pregnant patients has led to a less than 1% transmission rate from mother to baby over the last five years. "It's supposed to be zero. Our goal is for every baby to be negative," she said.

In 2021, more than 26% of new infections in Florida were women, however testing rates in women tend to be low.

In addition, 436 babies had perinatal exposure to HIV in Florida in 2021: Four of them were born with HIV.

For now, babies born with HIV must take a regimen of antiviral medications for their entire lives to keep their HIV levels undetectable. Robinson said a clinical trial in which her center is participating could put an end to that lifetime need.

The center is enrolling babies in the "cure study" which involves giving early intensive treatment to HIV infected infants. with the goal of suppressing the virus to spare a newborn a lifetime of taking medication.

"Once a baby is infected, a small reservoir of virus can lay dormant in the body," Robinson explains. "If we start the baby on medication within hours of birth, we hope it will decrease the size of the reservoir formed in the baby or eliminate it. Our hope is that five or 10 years from now we can wean the child off medications indefinitely."

Compared to other states, Florida pediatric cases of HIV are relatively high. Florida makes up 13% of pediatric HIV infections in the U.S., according to the U.S. Centers for Disease Control and Prevention.

Over the last few years, advancements have offered hope to children with HIV.

Rather than taking a combination of four or more prescribed pills two times per day, many patients can now take a combination of drugs in one tablet once a day with minimal negative side effects. Robinson said this helps with "pill fatigue" and improves regular adherence.

Also, some patients now have the option to take long-acting shots where they are given two injections every eight weeks instead of daily pills. That means they only need shots six days in a year versus taking medications 365 days a year. Robinson said she anticipates the shots becoming more widely available in 2024.

Robinson said the center's research helped generated data that allowed pediatric HIV drug formulations of HIV drugs to come to market. Younger children can now take liquid medication.

Researchers say trends in HIV prevalence among young people show encouraging declines. CDC estimates show new HIV infections overall declined 12% from 2017 to 2021, driven by a 34% decrease in new infections among 13- to 24-year-olds. At the end of 2019, an estimated 950,000 children between the ages of 0 and 14 who were living with HIV were on antiretroviral therapy.

Dr. Marcus Conant, chief medical officer at American Gene Technologies, oversees the clinical trials for a potential HIV cure therapy. Conant was one of the first physicians in San Francisco to diagnose and treat Acquired Immune Deficiency Syndrome, or AIDS, in 1981. He says it has been challenging to enroll infants and children in national HIV drug trials because of weight limits. So the focus has to be on mothers, he said.

"Over the last decade, as a result of ensuring more women of childbearing age with HIV are on medication and the virus is undetectable, the likelihood of children with HIV has significantly decreased," he said. "That has to continue."

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