What's the Most Overlooked Issue in HIV Care Today?
Thanks to current antiretroviral therapy, individuals with HIV can live long, healthy lives. However, there are still barriers including access to and retention in care. Additionally, for those with full access to HIV care, there can be other complications.
To help identify and address more of these obstacles, we asked some of the leading HIV experts and advocates what they think is the most overlooked issue in HIV care today. These interviews were conducted at CROI 2016 in Boston.
David Alain Wohl, M.D.
Dr. Wohl is an associate professor of medicine in the Division of Infectious Diseases at the University of North Carolina and site leader of the University of North Carolina AIDS Clinical Trials Unit at Chapel Hill.
I don't know if it's still an overlooked issue or not, but I do think that we've played this tune over and over that maybe we don't hear anymore. But the biggest problem in my clinic is not drug resistance; it's not even drug interactions; it's not cardiovascular disease or stroke: It's mental health and substance abuse issues. Again, I don't think it's overlooked, there are plenty of people who are paying attention to that, but my patients have been challenged for a really long time because they have a hard time dealing with life. And those are the people who don't do as well; those are the people who drop out of care; those are the people who don't stay in care, don't engage in care; and those are the people who die. And I suspect those are the people who transmit the virus to others.
We just don't have a very good system in this country for dealing with things like that, like mental health. And you can't go to a clean, well-lit place and get mental health care. And people who have substance abuse problems have to get on lists. And if they're lucky, they get into a program that works maybe 30% of the time. That's just tragic. So for me that's a major, major problem.
Anna Grimsrud, Ph.D., M.P.H.
Dr. Grimsrud is the program specialist at the International AIDS Society.
I think that we have to realize that we've had a really "one size fits all" [approach] to ART [antiretroviral therapy] delivery. And that's how we got to the first 15 million people on treatment with this public health approach. But we now acknowledge that we've got different types of patients. We've got patients who have been on treatment for 10 years. We've got new patients who have never experienced illness, and we've got patients who are failing treatment because the system doesn't work for them. So we need to still have a public health approach that streamlines this, but acknowledges that HIV-positive people have different needs, and so the treatment systems need to reflect that.
Joel Gallant, M.D., Ph.D.
Dr. Gallant is the medical director of specialty services at Southwest CARE Center.
That it's still a disease for experts. Even with simplification of therapy, including the ability to suppress viral load with a single daily tablet, we still see that people with HIV do better when they're managed by experienced clinicians. Maybe it's because experts have access to more support services than generalists who just see a few HIV-positive patients, or maybe it's because they know what to do when things go wrong. Regardless of the reason, we're fooling ourselves if we think we can just incorporate HIV into the practices of busy primary care providers who have no training or experience managing the disease.
Monica Gandhi, M.D., M.P.H.
Dr. Gandhi is a professor of medicine in the HIV/AIDS division at the University of California San Francisco.
The disparity in outcomes between HIV-infected men and women in the U.S. and other resource-rich settings.
Laurel Sprague
Laurel is the research director at Sero.
Stigma -- HIV stigma. I think that's predictable. But it's making safe places for people to show up to be able to get the care that they need, especially people who are living with HIV, in general -- LGBT people, sex workers, people who use drugs, people who already expect to be mistreated when they show up in a clinical setting. They need extra support to be able to show up and be treated well.
Mitchell Warren
Mitchell is the executive director of AVAC.
I think the most overlooked issue is really understanding the individual needs of a patient on treatment, or an individual at risk for prevention. We have spent a lot of time over 30 years, 35 years, really doing so much better science of the medical [aspects]. I think we are still needing to do a great deal more around the behavioral components of that -- whether it's about taking treatment, whether it's about using a condom, using a vaginal ring -- really understanding the dynamics of using products and understanding the dynamics of people's perception of risk.
I think we often get into this, like these are biomedical fixes, and these products, treatment and prevention, don't work because they don't get used. I think we need to really understand that much, much better.
When I look out at the future, it's both about prevention but, also, when you look at these very ambitious global goals, and "90-90-90" [UNAIDS aim for 90% of people with HIV to know their status, 90% of people who know their status to be on treatment, and 90% of people on treatment to have undetectable viral loads by 2020], getting basically 73% of people virally suppressed -- we're, in this country, [now] at 30% -- there are a lot of issues there. A lot of it is around stigma. A lot of it is about risk. A lot of it is about, "Do I want to stay on drugs when I'm healthy?" for treatment.
It's not just about understanding the prevention needs for people, whether positive or negative, but also about treatment -- understanding why people are adherent, because adherence is a problem for treatment as much as for prevention.
Stephen Berry, M.D.
Dr. Berry is an assistant professor of medicine at the Johns Hopkins University School of Medicine.
There are many. It's hard to pick. Is it not enough attention to metabolic complications? Not enough attention to nonalcoholic fatty liver disease? Is it more attention to transgender?
I think there's a whole lot of things. Cardiovascular disease. We have a lot of indications that we should be doing our utmost to prevent cardiovascular disease in people living with HIV -- and we aren't. We are not always necessarily prescribing aspirin in the population where we should, or doing other relatively routine, well-accepted preventive measures in the general population.
What else? We actually do a poor job of some annual screening recommendations. We're supposed to be doing a lot of screening for gonorrhea and chlamydia. And there's a nice poster, a nationally representative [study], saying we do a poor job, especially among men who have sex with men. As HIV docs we're bad for some reason (many of us) at saying, "Hey, you know, you've got to get screened everywhere you have sex. So we've got to do a rectal screening. We've got to do oral screening."
STD clinics can do it very well. Docs in those clinics are real good at coaching patients through what needs to be done. And it's a routine part of care. And in HIV clinics, some are much better than others.
Rajesh Gandhi, M.D.
Dr. Gandhi is an associate professor of medicine at Harvard Medical School, and the director of HIV clinical services and education at Massachusetts General Hospital.
I think the two that people are looking at, but need to look at carefully, are CSF (cerebral spinal fluid), the fluid around the brain; and this meeting has been spending a lot of time talking about lymph node tissues. So those are two areas that it's important to see the blood-based study. Do we see the same kinds of things in the CSF and in the lymph nodes as we do in the blood?
One study we're doing within this study is to take a subset of these people and do lumbar punctures -- look at the fluid around the brain.
Also, we actually are not, ourselves, looking at lymph nodes, but you'll see at this meeting other studies looking at reservoirs. Looking at whether inflammation and amount of virus in those tissue departments correlate. We, interestingly, don't see a correlation between inflammation and -- at least there should be -- cellular DNA and cellular RNA in the blood. We have not yet looked at T-cell activation -- another way to look at the immune response. But that's ongoing.
Cindra Feuer
Cindra is senior communications and policy advisor at AVAC.
In clinical care, I think that there are so many overlooked issues. But I think, from an important perspective, [it is] the people who carry the biggest HIV burden -- gay men, trans women -- so their clinical care. A lot of them, especially gay men, are accessing care. And they're not even allowed to be talking about their sexuality, or they're not asked about their sexuality or it's dangerous to disclose their sexuality. That's one obvious thing, I think.
David Evans
David is director of research advocacy at Project Inform.
There's this great clinic in Oakland called Crush, and they do a lot of things that make their success with adolescents and young adults possible. One of those is that they have flexible clinic hours. They're open later. They have an outreach staff that stays in contact with their constituents in a way that works for their constituents. So it's a mix of text, phone calls, social media. If the client can't make it into the clinic, but it's important for them to be seen, the outreach worker will go wherever the client wants to be.
They've found out a way to do it in such a way that the clinic can actually have the capacity to make those services affordable for the clinic. What that tells me is that this population that so many people struggle to reach can be reached. But you have to be open to designing your services from the point of view of the needs of the client, and not what you think the clinic can deliver.
Given the fact that the epidemic is raging in younger people -- both MSM [men who have sex with men] and young women of color -- I think those are the models that we have to explore.
Keri Althoff, Ph.D., M.P.H.
Dr. Althoff is an assistant professor at Johns Hopkins Bloomberg School of Public Health.
How are we going to care for people as they age? For decades, the medical home for people with HIV has been their HIV clinician. Most HIV-positive adults have long relationships with their trusted clinicians. Is the HIV clinician going to continue to coordinate care for their HIV-positive patients, particularly if their health care needs become more complex and necessitate integrating care from numerous other specialties? What is the best model for caring for those aging with HIV? We need to start carefully considering this question.