In light of the federal government plan announced in February 2019 to end the HIV epidemic in the U.S., TheBody has created a new series called Eyes on the End. This series will include a snapshot of the HIV epidemic in each of the 48 counties, seven states, and two cities targeted within the plan. These profiles aren't meant to be the definitive story of the epidemic in each locale, but rather -- through sharing some basic statistics and interviews with a few key stakeholders -- to provide some context for what's occurring there, and what it will take to end the epidemic in that area.
The Big Picture: HIV in Harris County, Texas
The county is home to Houston, among the largest and most diverse cities in the U.S., where HIV rates have barely dropped in 20 years -- but where good HIV services help balance out high rates of uninsured people.
Need-to-Know Stats About HIV in Harris County
- In 2017, the more than 25,000 people living with HIV in Houston were 50% black, 29% Latinx, and 18% white. Houston's population overall is 34% white, 19% black, 40% Latinx, and 6% Asian.
- Between 2013 and 2017, new HIV diagnoses, which remained between 1,100 and 1,300 annually, were 80% male and 48% black. In 2017, 64% of all HIV cases among men derived from male-to-male sexual contact.
- Annual HIV rates have dropped only slightly since 1999.
- According to Houstonia magazine, as of last year, 84% of people living with HIV in Harris and surrounding counties who were receiving consistent care were virally suppressed -- but only 69% of all people living with HIV there were in treatment consistently.
- In 2018, nearly 18% of people in Texas, which has chosen not to expand Medicaid access, were uninsured -- the highest rate among states in the U.S.
Successes and Challenges Facing HIV Service Providers in Harris County
We spoke to Charlene Flash, M.D., M.P.H., associate chief medical officer, and Lindsay Lanagan, director of government relations and public affairs, at Legacy Community Health, a comprehensive federally qualified health center (FQHC) in Houston that grew out of the Montrose Clinic, which was founded in 1978.
Charlene Flash: I've been in my current position since March 2018. I moved to Houston in 2012 and joined the faculty at Baylor College of Medicine as an infectious disease professor while seeing patients in the public Harris Health System, where I became assistant director of HIV.
Tim Murphy: Why did you decide to go into infectious disease?
CF: I wanted to do something great, either cure cancer or end AIDS. I'm an African-American woman from an East Coast immigrant family, so my life has been touched by people who have died from AIDS. I watched how the epidemic impacted my community, spread fear. When I graduated from Yale, I worked on development of an HIV vaccine and spent time at an AIDS hospice, Bread and Roses. I've always been drawn to helping people on the margins.
TM: Tell us about Legacy.
Lindsay Lanagan: We have 1,200 staff -- that's 55% Hispanic, 19% black, 17% white, and 6% Asian, which mirrors the racial and ethnic breakdown of our clients. The initial clinical care at Legacy was primary care for people with HIV, then we later became an FQHC and expanded into other forms of care for people without HIV. In Harris County, the largest number of people with HIV are being cared for in the Harris Health System, then the second-largest at Legacy.
CF: For our roughly 5,000 HIV patients, we offer primary care, OB-GYN, behavioral (both psychiatric meds and talk therapy) and vision care. We also have case managers and social workers that help support people with the social determinants of health, such as transportation and housing. We also have health-insurance grant assistance for those eligible to be insured.
We have a very high population of LGBTQ patients, and our STD [sexually transmitted diseases] services really engage with vulnerable populations. Our community health workers go out and do testing in bars and bathhouses. We have a pharmacy. Last December, we started our PrEP [pre-exposure prophylaxis] prescription program. We're in our third week of piloting a same-day PrEP program where someone can walk in off the street and leave with their PrEP prescription the same day. You've seen this with Medicaid-expansion states like California and New York, but it's still unique in the southern U.S.
We have an empowerment program, which is based in the community with very high rates of transient individuals. We have a walk-in, drop-in center that prioritizes black men, focusing on sexual health and linkage to care but also helps address issues related to stigma around not only an HIV diagnosis but sexual orientation and gender identity. And we've been able to receive funds to replicate this program in rural Beaumont, Texas.
TM: What are you most proud of?
CF: My opportunity to care for patients and the individual lives I'm privileged to touch. I follow both patients living with HIV and those vulnerable to it. Institutionally, even prior to coming to Legacy, my core mission has been making sure that models of care emerge in spaces where the epidemic is at its highest, so that means in the southern U.S., even though I'm from Brooklyn and moved here from Boston. I want to put Houston on the map regarding ending the epidemic, so that's why I started one of the first PrEP programs here, even though Texas is a challenging space. We have the highest rate of uninsured people in the country, so if you have someone walk in looking for PrEP, there's also a high chance they have undiagnosed diabetes or hypertension.
TM: Where does your funding come from?
CF: We're an FQHC, so we receive federal funds for people who are un- or underinsured, but we're also a Ryan White–funded clinic. And we have a pretty robust philanthropy and development department. We're well known as a center of excellence for LGBTQ care, so we can get philanthropic dollars.
TM: What's been the toughest nut to crack? Where are you frustrated or challenged?
CF: One of the starkest differences between Houston and Boston, where I was at Beth Israel Deaconess Medical Center/Harvard Medical School, is the social determinants of health. Public transportation here is almost nonexistent. It's only the bus, and Houston is massive, larger than the state of Rhode Island, so it might take someone two hours to come to a doctor's appointment. Then there are several areas that are food deserts, no grocery stores. Then the high rate of uninsured. I saw more advanced AIDS in my first month in Houston than I saw during my entire infectious disease training in Boston.
TM: Does Houston have a plan for Ending the Epidemic (EtE)?
CF: Actually, Legacy was one of the sites that initiated the EtE plan for Harris County -- but we're starting far behind other cities. TM: If money were no object, what would you do?
CF: More ancillary staff such as nursing, social work, people to help with linkage to transportation and housing. I'd start clinics throughout communities that included a grocery store with fresh produce. Legacy has a 90-mile footprint with 32 clinical sites, so pairing groceries with all of them would make a big difference. I'd help people more with legal services, especially our immigrant population. Trump's attempts to limit immigration status opportunities for immigrants who seek public services have created barriers, people worried about accessing services.
TM: Do you have evidence that people are staying away from services because of fear?
LL: Anecdotally, our social workers have heard some concerns, but there's no actual data to point to. Harris Health, the public health system, has reported dropping numbers. We want to make sure it's known that people under 21 and pregnant women are exempt from the [legally challenged] public charge proposals. We've advocated to get those carve-outs.
TM: Dr. Flash, what are the most joyful and most stressful parts of your day?
CF: I'm not a very stressed-out person! I get joy from finding solutions, whether that's for an individual patient, even if I can give them some kind of healing that's not a medication -- but I also enjoy finding systemic solutions. Probably 80% of my time here is spent as an administrator.
TM: Tell us some stories that illustrate your challenges and successes.
CF: Three years ago when I was working in the Harris Health System, I had a patient, a white male, who came to me weighing about 80 pounds. He was profoundly homeless, and a friend of his brought him in with advanced AIDS and multiple other medical problems, including severe mental illness and being unable to walk properly. He preferred to live under a bridge in a cave-like area with his two dogs. So we were able to initiate him on meds, but when he didn't follow up, I worked with the HOT Team, the Houston PD's homeless outreach unit, and got them, with a social worker, to bring him back to the clinic just before we closed. I went to hug him and noticed that his black T-shirt had a white pattern on it. It was actually a lice infestation.
So over the course of the next six months, we got him virally suppressed and he gained a lot of weight. We got him linked to Medicaid and housing. But he would party at his new apartment, invite his homeless buddies there, and spend his whole [welfare] check. Then when I went on maternity leave, he wouldn't see anyone else [for a doctor] and stopped taking his meds, and we were unable to locate him, and he passed away. That's probably one of the most scarring stories for me. Both he and another patient of mine died while I was on maternity leave.
Positive POV: Steve Stellenwerf
We talked to Steve Stellenwerf, 63, a patient educator and navigator at Legacy, who was diagnosed with HIV in 1987.
Steve Stellenwerf: I've been out with my HIV status for 32 years. Most of my friends did not make it [this far alive with HIV], so every year is a gift for me. I'm so lucky to be able to do the work that I do here at Legacy, spending my days getting people on PrEP, which is fantastic, or linking those newly diagnosed with HIV to care, or working with our transgender population. I've been in my job here for five years and I don't foresee retiring.
Around when I was diagnosed, in 1987, all gay men were losing friends. I lived in LA at the time and had a lover here in Houston, Rick -- back then, we said "lover," not "husband" or "partner." He actually tested positive while I was away trying to be an actor, and I moved home immediately to take care of him. So I got tested and found out that I was positive, too. I thought it was likely, because all my close friends were positive, so I kind of took it in stride.
We both sought the best care we could. At that time, people were going to Mexico to buy ribavirin, and that's the first thing I did before going back to Texas. We did all sorts of cockamamie things like mushrooms from Japan, Chinese cucumbers -- you name it, we did it. We didn't have the Internet, so most of our information came from health food stores or Project Inform or The New York Native.
Of course, when AZT came out, everyone went on it, usually at too high a dose. I wasn't very compliant, which probably worked in my favor as it was revealed that AZT alone did more harm than good. Here in Houston, when somebody died, we'd collect their meds and give them to the next person. A lot of people were afraid to use their insurance, because you could be canceled if they knew you had HIV, so we paid for everything in cash.
Rick got sick in 1992, first regular pneumonia, then histoplasmosis, a horrible fungus from pigeon poop that a regular immune system fights off. Can you imagine being eaten alive by a fungus? He lived about six months more. He died May 28, 1993, the most horrible day of my life -- I think I was 36. His heart couldn't handle any of the treatments.
I'd poured all my energy into trying to keep him alive until the next, better drug came along. My coping mechanism was to drink and smoke, even though I also had support from his family and mine. It's not like something you can imagine, because while you're caring for someone you love, your other friends are getting sick and dying, and you're always trying to find the best treatment or a better doctor, with no Internet like today.
Rick left me with three dogs and a mortgage. I continued to work, doing supportive housing services at AIDS Foundation Houston, and see a doctor quarterly, taking AZT, then 3TC, not getting sick. Then flash forward to 1996. My doctor said, "There's something new called protease inhibitors -- you can start planning a life again." I said, "What?" That was great news. Of course, a lot of us were in debt. So I continued working and living. Some of the new drugs were horrible. I had the worst stomachaches imaginable. I had to take Immodium with every meal and I had an artery shut down in 2001, which might have been due to my meds. I've had a lot of bone trouble, chronic pain, but I'm no complainer and no wimp. I'm very grateful to be here and would take the meds all over again.
In 1998, I met my current partner, who was a volunteer at AFH. He was HIV negative but not scared of my status, and he's still negative 22 years later. He was a new start for me. When we met, I stopped drinking and settled down and dealt more with what had happened in the previous years. I went to a lot of therapy. I think I have a little bit of ASS, AIDS Survivor Syndrome. I haven't told you about having to clean the vomit and poop out of friends' apartments before their parents would go into them. But it creeps up on me when I least expect it. I can be driving home, and a song will come on the radio, and I will be transported back 20 years and I will sob. I think, "My God, all my friends are dead." I expected to grow old with a peer group, but for the most part, they're gone. I have a couple of good friends from the 80s who are still around, who were lucky to stay negative, and some girlfriends from high school who went through all of this with me.
TM: So tell us about your current work at Legacy.
SS: It's fantastic. I get to do PrEP and help keep people negative, and it fills me with joy that people can enjoy sex again without the anxiety or fear or punishment.
TM: Does it appear to you that fewer at-risk gay and bi men of color are going, or staying, on PrEP than white men?
SS: Yes, I see the racial disparities. There's still so much stigma in those communities, and they're less likely to come and be tested, for fear that they'll be seen here. I think a lot of people don't know that you can come here without insurance and get PrEP and all your labs and visits for as little as $20 a month. The most someone uninsured will pay here for PrEP is $80, and that's a huge bargain. White gay men are used to accessing health care. For some people, medical care is a new concept. It's crazy to think that's what our country is like, but it is. Poor people go to the E.R. to get health care. I think it'll make a big difference when we have a [presidential] administration that is truly behind [health care] and knows that HIV is not the same thing as HPV.
Just before this call, I had a guy come in for same-day PrEP. I rapid-tested him, and he was HIV positive. At 25 years old. If he'd come to me six months ago, I'd have him on PrEP. So instead I said to him, "You'll just take one pill and live a long life." I'm someone who's been positive longer than most of the people I counsel have been alive, and I'm thriving and working. It brings me joy if I can inspire someone to take their meds by telling them they'll have the same lifespan as an HIV-negative person.
TM: How would you describe the HIV situation in Houston, which has not been able to bring its annual HIV rates down very dramatically?
SS: Education is the challenge. Nationwide, we're a little apathetic about HIV now. Not enough people are getting tested, and everyone [at risk] should be on PrEP. There should be more publicity about it. I know there are TV ads for it now, but it's been [FDA-approved] for seven years, and a lot more people should be on it by now.
Houston has a lot of care resources for people with HIV, even if you're uninsured. Of course, retaining people in care is another thing. We have a lot of undocumented people here who can get here, or who need to be on PrEP, but sometimes they have to go back to Mexico for a period of time and they'll drop out of care, even though it's easy to get back in care with us.
TM: Tell us a happy story about the work you do.
SS: I have a heterosexual couple. Now even though we know that U=U [undetectable equals untransmittable], a lot of [serodiscordant] couples can't fathom it, especially the positive partner, who usually wants their partner on PrEP, too. So with this couple, the male is positive and undetectable and the wife is negative and was on PrEP. So two years ago, they wanted to have a baby, and they did, the old-fashioned way [through having sex], a gorgeous child, and the woman is back on PrEP and they're trying to have another child.
TM: What do you do in your spare time?
SS: My partner and I go to the movies a lot. We just saw Judy, which was fabulous. If Renée Zellweger doesn't win an award, then something's wrong. I've also become quite a baker. Pretty much everyone around me gets fat except me, because I'm tall and lanky. We also rescue a lot of animals. We have six cats, and I'm stopping there, because I'm like the crazy cat lady on the block.
TM: How is your health?
SS: Good! I have the pleasure of aging, which my friends did not get to do. I had avascular necrosis, bone disease, which six years ago required a hip replacement, which stopped me from rollerblading, which had been my passion. I'm a little pissed about that. My T cells never go higher than 500, but that's more than enough.
TM: How do you make sense of the crazy life you've had?
SS: My goal in the late 70s and early 80s was to be an actor. Never did I dream I would work in this field for 31 years. I can't make sense of my life. All I can say is that it has been fabulous, even with the downsides. I don't know if I believe in fate, but I'm glad I was here, because I feel like I made a difference and helped a lot of people. I never made a lot of money, because nothing can compare with being productive and feeling like you're doing good in the world.