With success comes new issues

Forty years ago, children didn’t come to mind when most people thought about AIDS. But children were also being affected. They were born with HIV, or they acquired it through a blood transfusion or from receiving a blood product. 

Today, it’s a different world for everyone, thanks to drug developments and the research participants who helped make the medications possible. Some of those research participants were children. 

“What an amazing, complete change, to see the tremendous difference in children’s care,” says Rohan Hazra, MD, who has dedicated his life’s work to pediatric HIV. “When I was an intern at Boston Children’s Hospital’s AIDS ward, half of the children were sick or dying,” he recalls. “Now we talk to children to plan a normal lifespan.” 

Dr. Hazra points to the advances in drug development and other research, including basic science, arising from HIV work. But, he adds, “I’m equally moved by the patients and families themselves. They’ve been through so much and they still participate. Living with HIV is still stigmatized even now.”

In 2007, Dr. Hazra joined the National Institute of Child Health and Human Development (NICHD), part of the National Institutes of Health (NIH), and since 2008 he has overseen the Pediatric HIV AIDS Cohort Study (PHACS, pronounced facts). Last year, he was named the acting associate director for extramural research, which serves as an umbrella group overseeing studies and clinical trials from different NIH institutes. Many of the studies include children from around the world.

At first, medications were difficult for children to take, he says. There were many side effects and the medications didn’t taste good. In 1990, he says, there was the promise of better treatments to come. But at the time, “It was a real struggle to get kids to take medicine. Now our antiretrovirals are much better.” 

“We’re still looking at the medical effects on organs—the heart, brain, kidneys, liver. But we’re really not finding any major effects. That’s really heartening,” says Dr. Hazra.

‘When I was an intern at Boston Children’s Hospital’s AIDS ward, half of the children were sick or dying. Now we talk to children to plan a normal lifespan.’ Dr. Rohan Hazra

Stigma, however, continues to matter greatly in pediatrics because with health care involving any serious condition, clinics tend to concern themselves much more with the welfare of the kids and their families than adult clinics would with their patients. Pediatric HIV research clinics will help families deal with disclosure and other stressors. Special summer camps for children facing a serious disease in themselves or their families might be made available. Other family outings could be on the agenda. Some of the studies, including PHACS, have sites around the country. The site located at the Children’s Hospital Colorado, in Denver, has arranged for young participants to go horseback riding.

The sites have to go above and beyond to work with families in other ways as well. For example, they may offer snacks and beverages. They may guide family members through hospital corridors to get to where the clinic is located.

It’s part of what makes transitioning to an adult clinic difficult. In pediatrics, “transitioning” refers to leaving the cocoon of your pediatric clinic to entering a clinic for adults where they don’t know you. And they have no idea what you’ve been through in your young life. And suddenly, you’re on your own for dealing with your medical care, without the extra handholding (and kindness) associated with specialized pediatric care.

Nurse practitioner Julia B. Purdy, MSN, CRNP, who has also dedicated her work at NIH to children who acquired HIV around the time of birth, agrees that children’s survival is no longer the overriding concern it was long ago, but that the stigma associated with HIV remains nearly as strong as ever. 

“I started out 20 years ago with patients who were very young, and the issue was survival, but we also helped families deal with disclosure and stigma. Fast forward 20 years and we don’t have to worry as much about survival,” says Purdy, who today serves as a Senior Research Nurse Specialist at the NIH.

Back then, children participating in research were receiving free expert care at a time when so little was known about the disease or possible treatment. 

Now there are fewer and fewer children being born with HIV in the U.S. In the latest statistic from the U.S. Centers for Disease Control and Prevention, there were 35 children born with HIV in 2018 (HIV Surveillance Report, 2019). 

Dealing with disclosure is still important, but family planning has also taken on greater importance with the options now available and the desire of younger long-term survivors who are now adults to have a family. 

There are also more conversations between provider and patient and between patients and their sex partners, thanks to the use of HIV treatment as prevention (TasP), which stops the virus from being transmitted to sex partners. (See “U=U” on page 21.) 

These advancements don’t necessarily make the conversations easy.

“Being an adolescent and healthy is a challenge, but being an adolescent with HIV is much more challenging,” Purdy says. But, she adds, “Many of our now-adult patients are having families and doing really well.” 

These now-grown adults participating in a longitudinal NIH study travel yearly to the NIH Clinical Center for study-related tests and procedures. They may also participate in other NIH studies and even stay overnight. The NIH campus of teaching hospitals is located in Bethesda, Maryland, just 10 miles from the center of Washington, DC. 

“You can’t be a patient unless you’re enrolled in a study,” says Purdy. “This is the largest hospital dedicated to research in the U.S. There are 27 research institutions and centers focusing on particular diseases or conditions. Our research is under NIAID [the National Institute of Allergy and Infectious Diseases].

“Many of our study participants have been coming here to the NIH since they were young,” says Purdy. “The goal of our current research is to understand the clinical outcomes and impact of HIV infection and its treatment on this unique cohort of individuals. Patients in our study, the NIH COPE study, undergo laboratory, cardiac, and metabolic evaluations and more recently, our work is focused on reproductive health and decision making, topics which are very important to our aging population. Participation in the study is free of charge. We also advise the patients’ local health care team when requested.” 

Evaluating the metabolic effects of treatment, the team found weight gain and observed more fatty liver, as is seen with people who acquired HIV as adults. “For a long-time people couldn’t gain weight,” says Purdy. “Now the antiretrovirals are so good that people can gain too much weight.” 

Still, she notes, “We don’t know what it’s going to be like being on antiretrovirals for 40, 50 years and longer.” 

Research studies can provide access to cutting-edge medical services that could one day become standard of care, years ahead of time. They can perform sophisticated procedures that insurance may not cover. And it’s all free because studies cannot charge people for the costs of participation.

In addition to physical conditions, PHACS and other pediatric HIV studies look at mental health, as well, such as depression.  

This year and last, there was a lot of work added to look at COVID. Dr. Hazra said that because of the quarantine, there was an increase in telehealth and other remote health care techniques. 

For example, testing kits were sent out to study participants. They received a device they attached to their upper arm to draw a small amount of blood. Then they mailed it back. 

“It doesn’t even hurt,” says Dr. Hazra. “It doesn’t leave a scar. So they don’t have to come to the clinic and sign in and wait. We can engage individuals in a way that’s much less burdensome now,” he says. 

These long-term studies can be hard to keep going, especially those that keep track of children. 

“Some had very involved parents,” says Purdy. “But now, as adults, they have to take their meds on their own, travel on their own. It’s hard to keep people in a longitudinal study, especially with work and school. This is a very mobile group. We are grateful for the important contribution our patients make to the research and its impact on the care of others.”

Dr. Hazra referred to the early pediatric study participants as “the first wave.” 

“Through their participation, they’ve helped millions of children around the world,” Dr. Hazra says. “Some of it may not have even helped them, but they wanted to do what they could to help others as well.”

Ben and Kasiah Banks with daughter Finley

I’ve been very blessed.—Ben Banks

At age 40, Ben Banks continues to participate in the clinical research studies at the NIH. 

Banks had a deadly form of cancer at age three, and because he was from a military family, he was treated at a naval hospital. But during follow-up years later, it was found that he had contracted HIV from a blood transfusion he needed for cancer treatment. He was 11. 

He continued to be treated for his newly-discovered virus at the military hospital, initially receiving AZT. But when he was 17, his doctor told him he should get medical care at the NIH next door in Bethesda. “They can do a lot more for you across the street,” his doctor said.

“I was only on ddI [Videx] at the time, for two or three years. It was a chewable horse pill. I can still remember the horrible taste,” Banks says, something that he discusses with other friends who lived through the experience as children.

He remembered that the first nurse to take his blood at NIH didn’t wear gloves. At a much later date, she explained to him that she didn’t want him to feel as if he was a danger to others. She said the risk to her from a blood draw was extremely small. “I wanted you to feel accepted by me,” she told him.

That experience helped him to balance his other encounters in the outside world.

“She wanted me to feel normal,” says Banks. “There’s still so much stigma and discrimination. The people who got involved in pediatric HIV, it’s because they wanted to. They lost people close to them. The compassion level is so high. I knew that in the hospital, at home, and in church I was accepted no matter what.” 

Today, the Bethesda campus is a two-hour drive from his home. He continues to participate in multiple studies. “MRIs. DEXA scans. EKGs. All kinds of things. In one study, they were checking to see how much of my medicine was being absorbed. So I had blood taken every hour for eight hours. They’ve taken 25 tubes of blood before. I go in every three months because of multiple studies. I’m one of those people who take full advantage of opportunities. I’m a firm believer that we’re always supposed to be learning. And we’re supposed to share what we learn. I tell people what’s science fiction today will be science 10 years from now. We’ve got brilliant minds. They’re unlocking doors for diseases and new ways to treat people.

‘Even the researchers go from one study to another. I’ll go down the hallway and I saw Wendy, who was my nurse 20 years ago. She asked me, ‘How old is Finley [my daughter] now?’ ‘She’s eight.’ ‘Wow.’ Banks married his high school sweetheart and has been married for 18 years.

“It’s really cool. Even the researchers go from one study to another. I’ll go down the hallway and I saw Wendy, who was my nurse 20 years ago. She asked me, ‘How old is Finley [his daughter] now?’ ‘She’s eight.’ ‘Wow.’ Banks married his high school sweetheart and has been married for 18 years.

“What I like about NIH is that it’s multidisciplinary,” Banks says. “It’s not just medical. It’s the emotional aspect. It’s the spiritual aspect.

“Through NIH, I’ve spoken at symposiums. I’ve gone into research labs. When I talk with medical students, I tell them the amount of HIV in my body is about the size of my fingernail. So, treat the whole person. That’s my message,” he says, “treat people, not diseases.”

He gives talks through his college, James Madison University in Harrisonburg, Virginia, and has served on committees for HIV treatment guidelines. 

Yet as an adolescent, he was silent about his HIV status throughout high school, even when his class discussed the movie The Ryan White Story. Like Ryan White, Banks had to receive permission from the school superintendent to attend high school, although unlike White, he didn’t have to fight for it. “The only people who knew my status were the principal, the guidance counselor, the school nurse, and the physical ed teacher. I had to keep my AZT on me for confidentiality.” He remained silent throughout college. But he’s long past that now. 

“When I started, they told us to keep it hush-hush,” Banks says. “Because of that, many of the kids didn’t know why they were there. Parents told them they had cancer.

“I’ve had conversations with a friend, remembering: ‘Man, that was some crazy stuff we went through in our lives. How did they get us to take something that tasted so bad and convince us that it was good for us?’ The approach I take is that this may not benefit me, but it may benefit others.” But the medications did benefit him. 

“I’ve been very blessed,” he says.

He’s also proud about serving as an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, speaking to Georgetown University medical students every year. As an ambassador, he also mentors younger people living with HIV. “Some of them call me ‘Grandpa,’ because I’ve survived 40 years. I think that’s a sign of respect. I love my grandpa. ‘You paved the way for me’ is how I see it.”

He understands the stigma they face from classmates. “I believe stigma comes from two places: fear and lack of education. I want to educate people. These kids, I can’t fault them,” Banks says. “They don’t know better. How can you fault them when they don’t have the knowledge to understand this?”

He tells the world, “Listen to the children. Let them have a voice. Sometimes children are much wiser than we give them credit for. The guardians and parents sign the permission forms. Let children express their opinions and value those opinions. 

“As a child, a lot of times there’s anger. ‘What did I do to deserve this? Why did my mom and dad do those things and not think about me?’ They’re afraid. So, sometimes they build a wall. But they’re fragile inside.” 

Some of the kids he mentored from grade school are now getting married. 

Many kids living with HIV don’t look like Banks, who is white and middle class.

“Inside we’re all the same. We have a brain. We have a heart. I relate to people of color. I relate to the gay community. Because I’ve been discriminated against. So I tell some of these children, ‘Don’t let anything be a handicap. Push through it. Show the world what you have to offer.’ 

“I’m coming from the cancer world and the HIV world. It’s an instant bond. It’s hard to describe, but it’s an instant bond for people who have survived something that’s trying to kill them.”

I want to be normal.—Ali

Ali, 35, was three when her family learned that she had HIV. The youngest of five children, only she and her sister who was four had the virus. Her five-year-old sister did not have HIV, but was born with fetal alcohol syndrome. The three sisters were placed in a foster home after their mother died of AIDS-related causes. Their two oldest siblings were teenagers and unable to care for them. As Ali sees it, “I’ve been in foster homes all my life.”

Ali and her sister were enrolled in NIH research studies by their first foster mother, but were later removed from that home. They remained in their new home, with the foster mom Ali stays in touch with to this day. As children, Ali and her sister traveled from their Florida home to NIH in Bethesda. 

“That’s where I began the whole journey with medications and therapy,” Ali says. “I’ve been undetectable since 2007 to this day thanks to new drugs on the market.” 

It’s been a long journey. 

“I remember my [foster] mom waking us up in the middle of the night to give us medication,” Ali says. “In 1990 was when AZT was available and ddI was coming out. So I was on all of that. I felt I couldn’t be normal because I couldn’t go to slumber parties. Couldn’t even spend the night. Even now I say I have to take my vitamins when there are other people around.”

She and her sister participated in several studies. Sometimes they had DEXA scans and MRIs at the NIH. 

She also saw a therapist because she was very angry, she says. “Case managers had to follow us. They had to do a chart review because we were in a medical foster home. My mom—I call her my mom—was a nurse. We had home visits all the time and always had to talk with the case managers. That’s probably where the moodiness came in, because that’s a lot for a kid to adjust to. I have memories of being in second grade and going on the stage behind the curtains in the cafeteria and having my teacher give me my medication. It became the norm. As a kid, I wondered why do I have to be here [at the NIH] and talk to these people? But it becomes the norm too,” Ali says.

Ali and her sister enjoyed the excitement of flying between Florida and the NIH in Maryland, and taking sightseeing side trips. There was even a school at NIH, helping them with their homework from back home. But like the other children taking pills, Ali and her sister hated the taste of their medications.

“But my mom made sure we had the best life. We went to the movies, the skating rink, to Busch Gardens. She made sure we had birthday celebrations, and all of that. And that’s what I’m doing for my son today,” says Ali.

Ali did better as she grew older and didn’t have to travel as often to NIH. Her sister, however, was often sick.

“My sister and I were in the same studies, but she was not responding as well. She would sometimes stay for months [at NIH],” says Ali. 

Then, her sister died at age 14. Ali was 13. It was then that she found unused pills in her sister’s dresser. 

“Her body didn’t have as good a response to the medications. She was tired of fighting. I’m getting emotional,” Ali says, and starts to cry. “She gave up. There’s only so much you can take.” 

Ali continued to tolerate her medications, both physically and mentally. She was diligent about taking them.

“I’ve been very healthy,” she says. But she also had setbacks. 

“Yes, I was hospitalized. I had kidney stones. I had pneumocystis pneumonia [PCP]. I was hospitalized for esophageal candidiasis,” she says. 

In spite of all that, she graduated from high school with honors, thanks to her foster mom, she says. They remain in touch. “I talked with her today,” says Ali. 

Ali obtained legal emancipation at the age of 17 and would sign herself out of high school to attend medical appointments and then sign herself back in. “I was responsible,” she says. “I wasn’t playing hooky.” She even moved out into her own apartment at one point, when she was 18, but ended up moving back home. “It was a bit much,” she says. Today she lives in a beautiful apartment with her son.

Ali went straight to college, and continued to receive high grades. She took a few semesters off. She also gave birth to a healthy, HIV-negative boy while in college, at the age of 25, and went straight back to her classes. She hired babysitters and had a lot of help from her partner. Today, her son is “super healthy and active. He’s tall for his age and he’s now in the fourth grade.” She pushes him to do well in school the way her foster mother used to push her. She wants to be sure he goes to college. 

But at one point before she had her son, her HIV medications had stopped working for her. 

“That was the worst part, waiting for new drugs to be on the market. My mental health was deteriorating,” she says. “I’ve been on Cymbalta [an antidepressant] since 2007. I was depressed. I had mood changes because I had no HIV medications in me. It affected everything. I was like, dying. I was really sick and I was in the hospital. Then the new drugs were approved, and here I am.” 

She continues to participate in NIH clinical research. “Because of COVID, I’ve been doing Zoom,” she says, having virtual telehealth appointments using her smartphone. 

She also takes care of her health on her own. Because she’s healthy, she only sees her HIV specialist every six months. “I also see a psychiatrist. I see a cardiologist. I see a dentist. I see a rheumatologist. I got a referral because of joint pain. It’s not carpal tunnel—I had that before.

“And then I find time to exercise. That’s my stress relief,” Ali says. “I try to eat right. That all goes into my mood.”

Ali has always disclosed her status to the men she dated. She found a lot of misunderstanding. “People have not been educated about it,” she finds. “One guy told me, ‘I want to live and have kids.’ Well, so do I. It’s not a death sentence anymore the way people still think it is, even today. They don’t know. I am now with an amazing man who loves me for me and is supportive and even went with me to my doctor appointments.

“I want to be normal, just keep going—and there are people older than me who also started the medications when they were kids. If you are positive, follow through on your medication. Follow through on your doctor visits. Be healthy. Exercise. Don’t think that because you’re feeling good you can stop medication. I don’t do that,” Ali says. She knows that in spite of enjoying good health, “There are going to be sad days, depressing days. Get support. I used to be in support groups too.” 

Ali continues to need support: “I’m still wondering, how am I going to tell my son one day?”

Medications are here, but so is stigma. That’s another journey.

To find information on NIH studies, go to clinicaltrials.gov.