July 23, 2013
In terms of HIV care in the U.S., we've certainly come a long way in the 30 years since the virus was discovered. People with full access to care are generally living long and healthy lives, thanks to potent antiretrovirals and support from care providers, advocates and community activists alike.
However, there are still many barriers when it comes to getting patients into care and on treatment, achieving undetectable viral loads and reducing inflammation and comorbidities.
We asked some of the leading experts and advocates in HIV care what they think is the biggest obstacle we still need to overcome. These interviews were conducted at the 20th Conference on Retroviruses and Opportunistic Infections in Atlanta, Ga., earlier this year.
Additional reporting for this slide show was provided by Terri Wilder and Myles Helfand.
Access to Treatment
"My research is focused on eradication and actually curing people, but right now what people need is treatment. Treatment is very good, but everybody's got to have access to it. It's not as big a problem in the U.S., but certainly internationally. Treatment's extremely good. That's one of the reasons why there's a lot of attention shifting to: How do we actually cure people?"
-- Robert Siliciano, M.D., Ph.D., Professor of Medicine, Johns Hopkins School of Medicine, Baltimore, Md.
Non-HIV Primary Care
"What I spend most of my visits with my patients on is actually everything other than HIV.
"In other words, the virus is controlled, the CD4s are doing well, the regimens are minimally intrusive. So it's depression, blood pressure, sugar control, weight, exercise. It's internal medicine, the rest of health, because we've done a pretty good job in finding the right regimens that control the virus and don't cause a lot of problems.
"Of course, there are some toxicities -- diarrhea or whatever it may be -- or people that don't like their regimen, the number of pills or what have you. Nevertheless, that's a minor part of our visit. We focus most of the time on the rest of medicine, which is obviously great in a lot of ways. We've done the hard work and now we can focus on the 'easy' part, which is: It's tough to have a healthy life sometimes."
-- Calvin Cohen, M.D., M.S., Director of Research, Community Research Initiative of New England, Boston, Mass.
Fighting HIV Stigma and Ignorance
"The thing I think that's not getting discussed in proportion to its importance is stigma, trauma, ignorance, silence, denial -- all these things that feed off each other. You could have the best clinic in the world, but if right outside the door, in your neighborhood, people's notions of HIV are from the '80s, they're not going to come to your clinic.
"We've got a long way to go in adjusting to where people live and what their notions of what HIV are."
-- Heidi Nass, Activist, Madison, Wis.
Inflammation and Accelerated Aging
"I think the most pressing issue is inflammation. We know that patients with HIV -- especially those with chronic infection -- suffer with a lot of inflammation, which leads to accelerated aging, grinding down on the organs (heart, brain, kidney) and other issues. We don't really have an effective strategy for managing this.
"I think a lot of our therapies are very anecdotal -- aspirin, statins, diabetic control -- but I don't think we have any very specific agents to address this on a global level, in terms of decreasing inflammation in patients in a way that's going to make a clinical difference.
"I really welcome hearing about how I can better manage my patients, especially those that are aging and I know have had ongoing inflammation for years."
-- Antonio Urbina, M.D., Associate Medical Director, Spencer Cox Center for Health, St. Luke's-Roosevelt Hospital, New York, N.Y.
Funding for Health Coverage
"Continued federal funding for those who are uninsured and underinsured. For states like Georgia, North Carolina, potentially Texas, we're not going to do Medicaid expansion right away. If we don't have these continued Ryan White funds, we won't be able to provide care."
-- David Reznik, D.D.S., Director, Oral Health Center of the Infectious Disease Program of Grady Health System, Atlanta, Ga.
"What I see now for HIV care -- the stable, in-care patients -- is all the other things in life they're running into: problems with aging that we think may be accelerated by underlying HIV, even well controlled; some of the other complications that have emerged, including sexually transmitted hepatitis C [among] HIV-infected MSM; new manifestations of old [complications] and possible new infections that are being introduced, including increases in syphilis as our patients are getting more used to being healthy.
"So I think our biggest challenges are now going to be continuing to live a full life and not running into extra risks or extra morbidities, either from the HIV infection itself or from other behaviors that come with living longer and having other consequences."
-- Daniel Fierer, M.D., Assistant Professor of Medicine and Infectious Diseases, Division of Infectious Diseases at Mt. Sinai School of Medicine, New York, N.Y.
Access to Care
"In the [United Kingdom], we have free delivery of HIV care, so patients can access HIV care without having to forgo any resources. What we see is that system is very attractive to patients. They've got high levels of patients engaging in care, remaining in care, high levels of viral suppression and therefore low rates of complications.
"Our impression of the U.S. is that many patients find it difficult to access care or to remain in care, and therefore levels of engagement are much lower, resulting in lots of people remaining at risk of complication and therefore higher rates of complications that are avoidable with better access to HIV care."
-- Frank Post, M.D., Ph.D., Reader in HIV Medicine, King's College Hospital in South London, U.K.
"Culturally incompetent service providers are one of the first barriers impacting care. Also, transportation [to care facilities] and the other health disparities that people are dealing with. They should be put on the forefront, because those are the most pressing issues in a person's life.
"Mental health: If you don't have a good mind, how can you see about taking medication every day? If you don't have a place to stay, how are you going to take your medicine? It's all those things."
-- Dee Dee Chamblee, Executive Director, LaGender, Inc., Atlanta, Ga.
"One of the most interesting things to emerge in the last few years is this new concept of a care continuum or the cascade of care. What that shows is that we lose people from our health care system at multiple steps, multiple levels. We start out with about 20% of the U.S. population who we think have HIV, but they don't know it. Then we [have] the group of patients that are actually tested and they know their HIV status. [Then] we have a drop-off that is significant, in terms of engagement in care.
"Getting people who are HIV infected and known to be HIV infected into care is our first challenge, because we have a lot of treatments that are very effective, but if you're not in care, you can't get them.
"I think getting people into care efficiently and effectively is a huge challenge. I hope we will begin to see monitoring of that, because right now we don't really always know how many people are not linked to care.
"As we monitor that, I think we can begin to measure how well we do at getting people in care and then once they are linked to care, they have to stay in care to have effective antiretroviral therapy -- in terms of individual benefit -- and also to benefit society, in terms of HIV prevention."
-- Melanie Thompson, M.D., Founder and Principal Investigator, AIDS Research Consortium of Atlanta, Atlanta, Ga.
Morbidity and Mortality Rates
"I think the most pressing issue is the need to decrease the morbidity and mortality of HIV-treated patients with CD4 counts above 200. That is what the biggest issue is in my practice now, as far as treatment is concerned.
"I can treat people who have AIDS with effective regimens. I can keep people undetectable when they're on [treatment], but I'm still seeing death rates that I'm not happy with, [despite] good CD4 counts. We have to have some impact on that.
"It goes along with what is going on with the patients and their cardiovascular, liver, kidney -- all these toxicities, some of which is related to drugs, but some of it is because people have had HIV for five, 10, 15, 20 years. The question is: Can we make an impact on those inflammatory pathways that have been associated with all these toxicities? Do we have markers to find these inflammatory pathways that may be a benefit to the long-term survival of HIV patients?"
-- Joseph Gathe, M.D., Private Practice, Houston, Texas
Test and Treat
"There are a number of things that are important. Probably the most important is getting everybody that's infected on treatment. There are still a large number of people in the U.S. that don't know they're infected and could be treated. That would do a lot for them and also do a lot to inhibit transmission."
-- Joseph Margolick, M.D., Ph.D., Professor of Molecular Biology and Immunology, Johns Hopkins School of Public Health, Baltimore, Md.
Non-HIV Chronic Diseases
"As an epidemiologist and researcher with the HIV Outpatient Study, I think one of the biggest issues is the burden of chronic diseases, many of which are untreated and undiagnosed or underdiagnosed and therefore shortening survival and decreasing quality of life in HIV-infected patients."
-- Kate Buchacz, Ph.D., M.P.H., U.S. Centers for Disease Control, Atlanta, Ga.
For More Information
To explore the issues raised by these HIV care providers, researchers and advocates in more depth, check out the following resources on TheBodyPRO.com: