An HIV-Positive Professional Discusses His Tumultuous Diagnosis and the Problem With Retention in Care
The HIV care continuum -- the data-driven representation of how far HIV-positive people in the United States have traveled on their HIV-care journey -- is a useful tool for showing in what ways we need to do better by HIV-positive Americans. There are people who are having trouble getting from one part of the continuum to the other. Some people are diagnosed, but do not get into care. Some people who get into care are not retained; some who are retained never begin medication; and some who begin medication do not get on successful treatment and end up virally rebounding.
As a professional in the HIV workforce, and an HIV-positive person himself, Adam Thompson knows the HIV care continuum both personally and professionally. In this interview, he shares the story of his own diagnosis, how difficult it was for him to get into care and what, as a professional working in an HIV clinic, he now sees as some of the main barriers to care.
Can you tell me when you were first diagnosed with HIV?
I was diagnosed in May of 2005, and entered care around February of 2006.
In between May 2005 and February 2006, was there any reason you didn't enter into care right away?
Yeah, I had a terrible diagnosis experience, where basically the clinicians were unprepared to deliver an HIV diagnosis. It was an acute care center in a suburban environment, so [they weren't] very engaging; it wasn't resonant or relevant to me as a young gay kid in the area, so I didn't really engage with those providers. They weren't really equipped to even provide HIV care, so it was a lot of referrals. I was young, homeless and a drug addict, so I don't think I would've followed up on [the referrals] even if they had given them to me, I don't think.
How old were you at the time?
Oh gosh, I am 36 now, so I was around 26.
You talked about when you were first diagnosed, and some of the first things that stopped you from getting into treatment. Had you addressed those things by February 2006?
They were definitely still there, and I wouldn't necessarily say those things were barriers. I would've engaged even if I was homeless. I think the providers had no real competency in the populations that I was a part of. They didn't know how to teach young gay kids, or homeless kids or drug addicts. I was a whole giant risk profile, and I think it made them uncomfortable, so it was more being able to sense their level of discomfort that kind of told me that this was not the place to link into.
It was mostly the providers' attitudes?
I felt that I wouldn't succeed. You know, I was given a referral to the health department to follow up with partner notification, but there was no real -- I mean, this was before we even had a focus on linkage and retention. So there was no real sort of pathway to the treatment center.
You said that when you started treatment in Feb 2006, you were still facing some of the issues we talked about, if not the primary ones. What changed that put you into treatment?
I was bouncing around Washington, D.C., and ... driving south I ended up stopping in Charlottesville, Virginia, where my fraternity brother was a resident physician at the time. And he basically took one look at me and knew how sick I was. And he knew I had been diagnosed with HIV and that drugs were involved. He kind of locked me up, and ... I shared with him my experience of the diagnosis, and he basically told me this is not normal, this is not how the diagnosis is supposed to go, and the whole care system does not work in this manner. So he basically asked me if I would be willing to meet with some physicians that he knew at the University of Virginia and, because I knew him, I was very ready to agree to do that because I trusted him and he trusted them. That better handshake with the system really drew me in.
What drug treatment regime did you start on in 2006?
I started on Atripla [efavirenz/tenofovir/FTC]. It had *just* come out. It was brand spankin' new. And at the time, the treatment guidelines didn't indicate for me to start treatment. I elected for treatment with my physician, she and I kinda talked about why I wanted to start treatment, so I started well before they advised me to.
Fast forward, are you still on Atripla?
Still on Atripla.
Can you talk about your work right now?
So, I have two hats. One of them is at the AIDS education and training center where we provide training and capacity building to those who are providing HIV care in Ryan White care settings. But the other hat that I wear is as a coach with the national quality center, which is a cooperative agreement with an HIV/AIDS bureau to provide technical assistance to Ryan White care centers. Currently, we're involved in a five-state collaborative where we have New Jersey, Ohio, Arkansas, Missouri, Mississippi [aim] to achieve some goal. The goal we set ... was for each state to create their own care continuum and then to turn around and use those continuums to address things like viral suppression. Each of these states -- and New Jersey is one of them, and I'm a coach and a participant so I see it on both levels -- they're looking at a cohort of patients that we've identified as not virally suppressed and we'll be looking at implementing quality improvement projects over a two-year period and track these individuals to suppression so we can see what's going on, and what strategies or interventions are working in relation to the clinics and care sites that have the highest improvements in their suppression rates.
What we discovered by looking at the continuum is that there's a couple of opportunities here. We recognize that people on the continuum who are prescribed antiretroviral medication take it. It's not a giant cliff that happens between prescribed [antiretroviral treatment] and suppressed [load] nationwide. But there is that giant cliff that takes place during retention. So something's happening when they come [away] from that first visit that's dissuading them from coming back, or some kind of barrier taking place. So we're looking at these bars to see what's going on. And we looked at adherence on a couple of levels.
[First, w]hat were individuals reporting as their personal barriers to adherence? And [second,] some of the clinical sites are going patient by patient that are not suppressed and doing multi-disciplinary team reviews of the patients to see what's happening, and then bucketing the information to identify what trends there might be in those patients who are not suppressed. And what we're seeing is -- I've seen some data coming out from the other states -- there's substance abuse, [and] mental health and [lack of] transportation keep rearing their head, as well as insurance barriers. We did an adherence assessment with those that are not adherent and a lot of people are telling us they "felt fine."
There's this big gap -- I don't think it's unique to HIV. How do we demonstrate to members of our community that even though they feel fine, there are markers to their health that indicate that they are not doing fine? That was a constant thing we kept hearing from the patients: "I feel fine." How do we convince people of [the status of] their actual health without giving them a new label, without telling them they're sick?