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Children, Gay Teens with HIV Living Longer

by Megan Barnes
EDGE Media Network Contributor
Wednesday Jul 27, 2011

When Dr. Joseph Church found the first Southern California cases of AIDS in children in 1983, his patients were deathly ill, with only weeks to live.

"That was before we could even test for it," recalled Church, a leading pediatric HIV doctor at Children's Hospital Los Angeles. "At the time, people didn't even want to believe it, but it was pretty clear what the situation was."

For the next decade, Church and his colleagues worked tirelessly to keep the growing number of kids, largely infected through blood transfusions, alive for as long as possible. Those who made it long enough for the arrival of antiretroviral drugs in the '90s started surviving. Today, they are college students and twenty-somethings leading healthy lives.

"I just got an email from one who graduated several years ago," Church said. "She's 27, and doing very well."

Three thousand kids in the U.S. were living with HIV in 2009 and 166 were diagnosed that year, according to the Centers for Disease Control. Ninety-one percent of them contracted it perinatally, or in the period during or around birth.

There were also more than 2,000 teens diagnosed with HIV in 2009, most of them male teens who contracted it through unprotected sex with men.

Sex education and treating at-risk pregnant women medication can be effective preventive tools, but until a cure arrives, Church and his colleagues keep their patients on a strict regimen of medication, monitoring, and counseling.

Then and Now

In the early '80s, most children with AIDS contracted it through blood transfusions, but with improved screening, the number dropped by the end of the decade and perinatal transmission became the leading cause. It remains so today.

The mothers of babies born with HIV usually contracted it through sex, but transmission through shared needle drug use is more prevalent in East Coast cities.

According to the CDC, 40 percent of mothers who perinatally transmitted HIV to babies born in 2000 were unaware of their status. Taking antiretroviral medication during the pregnancy reduces the risk of transmission by 98 percent, so identifying and screening at risk mothers is key.

With limited treatment available, the first children with AIDS were simply kept alive for as long as possible, anywhere from weeks to months. Over time, months became years. When the first cocktails -- individualized combinations of three antiretroviral drugs -- came along in the '90s, they were partially effective. But they were also toxic, and didn't work for everyone.

"Even though we had good cocktails beginning in '95, there were still a lot of kids who didn't have enough good medication. Their virus had become resistant and we couldn't put together a good cocktail," Church recalled. "It's a bit different now. For the most part, kids are doing remarkably well."

The power of drugs today means that early-treated youth can live long lives. The younger they begin treatment, the fewer T-cells they will lose, the greater potential they have to regain immune system response, and the less likely they are to transmit the virus to others. But it's never a guarantee, Church warned.

"One of the best preventive measures is to treat the infected people and if you get their virus to undetectable in their blood, then the possibility of their transmitting the virus to a sexual partner is substantially reduced, It's never zero, but it's markedly reduced."

Gay Teens

Aside from kids born with HIV, the other major group of youth with the virus is teens, predominantly young men who contract it through unprotected sex with men.

Dr. Marvin Belzer is head of the Division of Adolescent Medicine at Children's Hospital LA. When he arrived in 1989, his first HIV patients had little time to live.

Today, the program follows over 100 HIV-positive adolescents aged 13 to 24. Most of them are very low-income, half have mental health problems, and about a fourth are homeless at any given point in a year or have serious substance abuse problems.

"We had good cocktails beginning in ’95, but there were still a lot of kids...whose virus had become resistant," Dr. Joseph Church recalled. "Now, for the most part, kids are doing remarkably well."

"Adolescence is a time where people are supposed to be growing, individuating, separating from family, learning to be responsible, economically and socially, learning what types of relationships they want, and we try to help them reach those same milestones that every youth needs to obtain to have a successful, happy high quality of life," Belzer said.

Parents of the younger teens usually know about their status. The teens undergo counseling addressing their sex lives, questions of safe sex and status disclosure.

According to the CDC, 47 percent of high schools teens have had sex and 7.4 percent had sex before they were 13. Gay male teens and African-Americans are at a higher risk for HIV among young people.

Challenges and Stigma

One of the biggest challenges doctors treating HIV-positive youth face is simply getting them to take their medicine. Taking medicine to stay alive sounds like a straightforward enough equation, but getting kids to take 10 pills or force down disgusting liquids every day, when they can barely commit to finishing their veggies, is quite a challenge.

Kids with poor support systems at home may not learn how to properly take their drugs.

"We have a number of pretty sick kids because they've never been taught to take the medicines and it's getting kind of late because their immune systems are getting damaged," Church said. In the most resistant cases, stomach tubes are used to deliver medicine.

Young people struggling with drug problems and homelessness also have a hard time sticking to treatment. Some with mental health problems may be too depressed to take medicine.

"It's almost like a slow suicide. They can't explain why they can't do it, but it's clear that they're depressed and that they still can't do it," Belzer said. When the depression interferes with treatment, the teens get psychological help.

Most youth treated for HIV take medicine once a day, every day, with few side effects. Staff will help them set medicine reminder alarms on their cell phones and check up on them via text messages.

"Here in 2011, we have a number of extremely effective, extremely potent, mostly well-tolerated medications that will keep early infected youth alive for approximately 50 years if they take the medications correctly," Belzer said. "It's been a huge deal and it's rare that we get somebody who gets hospitalized for HIV."

Clinics today are equipped with teams of doctors, psychologists, caseworkers, nutritionists, and sex educators to serve HIV-positive youth.

But for all the strides in treatment, societal stigma remains a hurdle.

"Unfortunately there is still a major stigma particularly in youth and it is tough to deal with. People have to be exceptionally careful about who they tell that they're infected," Church said. "You've got somebody who's thinking of becoming sexually active, they want to do the right thing and not infect somebody, but on the other hand if they tell this person that they're positive, they don't know what the reaction will be."

Belzer has seen stigma directly affect his patients' treatment and familial relationships.

"This is the time where they want to fit in and be accepted by their peers and develop relationships, so it's a huge blow to get HIV and feel like no one's going to ever love you, respect you, want to have a long term relationship, have your children," Belzer said. He's had older teens from homophobic families keep their status a secret for fear of "told you so" remarks.

New and better drugs are always are on the horizon. Experts are now looking to gene therapy for a possible cure. In 2007, German researchers cured the first person of HIV in the world using a bone marrow transplant from a donor who was genetically resistant to the virus.

Church said until a cure or vaccine arrives, prevention is key.

"Risk reduction involves taking your medicine, getting your virus down, and making sure that if you choose to have sex, you have to use a barrier, and that means male condoms."

Megan Barnes is a freelance journalist in Los Angeles. She regularly contributes to EDGE, San Pedro Today and was a founding editor of alternative UCSB newspaper The Bottom Line. More of her work can be found at


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