After more than 30 years of treating young people living with HIV, Dr. Lisa Henry-Reid reflects on what more still needs to be done

Pediatrician Dr. Lisa Henry-Reid began her career in 1986, quickly focusing on children and adolescents living with HIV. After two years at the University of Illinois in Chicago, which was just then beginning to provide pediatric care, she moved to what is now Stroger Hospital of Cook County, in the heart of the city, and in the heart of poverty and more difficult health problems. She rose to become chair of the Division of Adolescent and Young Adult Medicine. As she looks back on her remarkable career in HIV before she moves into retirement, she makes an ironic statement about youth living in an epidemic: “We have a long way to go.”

Stigma is still a big, big problem. It’s pervasive. There are still people who think you can’t drink out of the same cup, eat off the same plate, or wash your clothes in the same washing machine for fear of getting infected. In the African American community we serve, many are still operating under several myths, not knowing how HIV is transmitted. Thinking that if you stand next to someone when they sneeze, you can catch it. Families say you have to eat off paper plates and use plastic forks and spoons, and throw them out yourself.

I think education can help with that. We need to talk together about HIV. I hope knowledge will decrease stigma.

We’ve had clients who were outed to their family about their sexuality by HIV and were put out of the house. Most of my patients are African American and Latinx. The one that always stays in my mind is the young man whose father said, ‘We don’t do gay here. You’ve got to go.’ And he was 17.

I have a patient who’s been positive seven years and has not disclosed to anyone because they fear they’ll be treated differently. That’s very difficult to live with. Stigma is very difficult to overcome.

It’s like with PrEP.

I feel strongly that PrEP should be marketed to everyone. “This is something that protects all people from HIV and if you have ever had an ‘oops,’ this is something that could be for you.”

I believe we need to normalize the message around PrEP: This is a medication you can use to prevent HIV. It’s for anyone at risk—senior citizens, youth, everyone. If we normalize it, PrEP is for anybody who wants to protect their health and we should put it in terms of health only. PrEP is for anyone who’s ever had an oops and might have an oops in the future. It’s like when you go to your doctor, you get your blood pressure taken.

People say, “This is a medication the government designed to make us sick, to give us HIV.” “We’ve heard if you take PrEP it’s going to increase your risk of getting HIV.”

We hear a lot from youth out in the community: “They call me a PrEP whore. They think I’m getting busy with a whole lot of people. And I don’t want to be perceived that way.”

We need to have a lot of talk.

Now that PrEP is approved for patients weighing 35 kg [77 pounds] and up, we need to increase the legal statute to protect their privacy, so they don’t need parental permission.

The CORE Center [a modern infectious disease clinic that’s part of the county hospital] is seen as a place for people who are HIV-positive, even though we have an STI clinic, where we offer PrEP services. So some of my patients prefer to see me at the hospital clinic. They’re afraid to run into someone they know, from a party or from a ball.

For youth, especially the ones transitioning in their sexuality or don’t know if they are LGBTQ, you have a double stigma—HIV-positive and gay or questioning. And that can be very difficult. Many are not living at home. I think it’s particularly true for LGBT and non-binary youth.

‘I believe we need to normalize the message around PrEP: This is a medication you can use to prevent HIV.’

Dr. Sybil Hosek and Dr. Jaime Martinez did a study on mental health in our population years ago. No one was surprised to see that the rates were much higher. There’s a lot of anxiety. Higher than the norm for that population. There is a lot of PTSD. There are housing issues. We find those issues need to be addressed before we can get to the conversation about taking an HIV medication.

There are not enough services for the unmet needs that are out there.

We clearly need to do a better job with HIV testing.

I used to query doctors about why they don’t test for HIV. I don’t know what the problem is. Fear of having a positive test and not knowing what to do? 

To me that’s not upholding your Hippocratic Oath at all. What would you prefer? To have your patient come back with AIDS because you weren’t comfortable testing? I used to say, “Well, come to me.”

I think emergency rooms are a key place for testing. Years ago we were funded to do testing in the ER. There was a young man with a sprained ankle. We had someone there asking if people wanted an HIV test and he said sure, and he was positive. He had chlamydia twice. He was openly gay-identified. So the markers for HIV were there. There were at least two opportunities for HIV testing that were missed. And he came in with a sprained ankle. Thank God for that project and that person.

While 51% of people living with HIV are virally suppressed [undetectable], for those 15 to 20 years old, it’s only about 25%.

We need to test, treat, and get virally suppressed so they can also benefit from U=U [Undetectable Equals Untransmittable].

So, they may have elevated viral load and that may be why we see more infections. So we need to test, so we’re not feeding into transmission by the undiagnosed who don’t know what their status is.

There’s a youth risk behavior survey by the CDC every two years. Small towns, large cities, private schools, public schools—everything, 9th through 12th grade. The number ever tested actually decreased between the 2016 and the 2018 data. And it’s only 50%. Even though they also asked, “Have you ever had sex? Have you had sex recently, within 30 days?”

Over 50% say they’ve had sex. Yet 50% haven’t been tested. And if we don’t test them, we can’t identify those with HIV.

Our clinic started for two reasons. Dr. Mardge Cohen, who’s known for her work with women, had a couple of young males she asked us to provide care for.

At the same time, hematologists asked us to take care of hemophilia patients. Initially the majority were hemophiliacs infected by factor [blood products]. There were 40 to 50 young adults around 1990. We knew everybody by name. Now, unfortunately, the epidemic has regularly impacted young adults, so we have close to 200 patients.

We didn’t have the drugs we have now, so you saw the spectrum of the disease. The difference now is that we have medication. The once-a-day tablet, STRs [single-tablet regimens], have been a boon.

Now we have viral load. You can see a lot of things with CD4s at the same level.

The thing about adolescents is they can sense if you’re comfortable or not. And they might generalize that to others. “I’m not going to venture out and seek care.”

I have quite a few patients turning 25 this year [the age at which pediatric care ends]. One I’ve been taking care of since she was 15.

The good news is there are a lot more providers for this population now. The Lurie [Children’s Hospital] program is largely expanding in a new building on the North Side, with Dr. Rob Garofalo. Advocate [Health Care] had one person, now four. We have more bodies doing the work. The University of Chicago on the South Side, in Woodlawn. We serve the West Side.

That’s good. But again, we have this problem with access. And we have this problem with retention in care. Young people don’t particularly understand the importance of staying on medication. They might take it one week and the next, say they don’t feel like taking it.

There will be more HIV testing. The question of oops will be asked and not ignored.

Every 10 years the research would say we’re going to have a cure. I’m hoping this 10-year span will bring some remarkable achievement so we have a vaccine or even a cure.