February 24, 2010
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Below is the transcript of a press conference held at CROI 2010 on Feb. 17, in which Kimberly Smith, M.D., M.P.H., of Rush University Medical Center in Chicago, previewed a talk she gave later in the conference about ways to combat racial disparities in HIV infection, treatment and mortality within the U.S.
Kimberly Smith: My talk tomorrow will mostly focus on the black community within the United States, although there'll be some discussion of some other parallel issues in Hispanic populations. As you all have probably already heard, there's clearly a disproportionate impact of HIV disease on black communities, with the numbers in black communities -- I'm sure you've probably already discussed, but just to review -- the black population makes up roughly 12% of the U.S. population, but about 50% of the HIV and AIDS cases in the United States. And the Hispanic population makes up approximately 14%, until the new census data come out, of the population and about 19% of the HIV/AIDS cases in the country. So obviously there is a dramatic disparity.
Kimberly Smith, M.D., M.P.H.
What I'll be talking about tomorrow are some of the drivers of that disparity.1 First, I'll talk about some of the risk factors that exist within the community that place individuals at risk -- substance abuse, high rates of incarceration and other risk factors. But what I'll talk about more is the fact that in the black community, particularly the heterosexual community, you don't have to have high-risk behaviors in order for you to be at risk. The prevalence has come to a point now where your likelihood of coming in contact with an HIV-infected person is so much higher that there's basically no room for error. And so that's true for black women who are having sex with men, as well as black men who are having sex with men.
I think that that's an important message for people to understand because I think one of the challenges in discussing HIV/AIDS in the black community has been there have been individuals put into certain categories of risk that is by definition stigmatizing. And so I think that if we start to focus on this as a community challenge, rather than focusing on individual risks, then that may move us in the right direction.
The second part of my talk will focus on the fact that not only is there disparity in incidence and prevalence, there's also disparity in mortality. Black individuals are much more likely to die of HIV-related diseases than white individuals. For black men, it's something like eightfold difference. And for black women, it's roughly a twentyfold difference in the likelihood of mortality from HIV/AIDS. And so my talk will review some of the reasons why that is.
One, I think that part of our challenge is that we're diagnosing individuals too late, when they have high viral loads, low CD4-cell counts and opportunistic infections, which makes treatment much more complicated. Initiatives like the D.C. Initiative are going to be very important in identifying people earlier with higher CD4-cell counts so they have a greater likelihood of being able to respond to therapy.
In addition, there's a large proportion of individuals, in some estimates, as much as 20% of HIV-infected individuals that are never in HIV care. Never in care, despite knowing that they have HIV for five years or more, they're never seen by an HIV provider. We find out that those individuals are sick when they're hospitalized with opportunistic infections. And again, their chance of being able to respond to therapy and do well is challenged because of their advanced stage of disease.
In addition, there are data that suggest that, in some cases, black individuals aren't responding as well to therapy. There are a number of cohort studies, as well clinical trials, that have shown that. Now there are a number of factors that I'll discuss in detail that will explain why we think that might be. It's not one answer. It's actually many, many factors. I'll save that for tomorrow's talk. But certainly, differences in response, as well as differences in the proportion of individuals that are on therapy are really playing a big role in the greater likelihood of mortality from HIV.
I'll finish my talk by basically talking about things that we need to do to make it better. And I think that some of the initiatives that are being presented at this meeting are moving us in the right direction. I mentioned the D.C. Initiative already. Other initiatives that are doing targeted testing, for example, one of the initiatives in New York City that is doing targeted testing in male "social" clubs -- and I'll use social with parentheses around that -- but that are finding high rates of HIV-infected individuals, and identifying those individuals and linking them immediately to care.
The D.C. Initiative is very important at being able to look at the population as a whole, but also, other initiatives that look at the target particular areas. I will talk tomorrow about a couple of studies where poor communities with high rates of HIV have been targeted with either mobile vans or other efforts. And high rates of HIV-infected individuals identified in those areas just on the basis of where they live, not on the basis of any particular risk factor. And so using more of those types of strategies to identify people earlier will be really a big move in the right direction.
But then the next direction is, how do we do better with treatment? And I think one of the challenges that we're experiencing, especially in this economy, is that we have fewer and fewer resources. We're hearing and floating around this meeting that the North Carolina ADAP [AIDS drug assistance program] program is soon to start a waiting list. The Illinois ADAP program is projected to run out of funds at the end of April. And so more resources that allow us to take these people that we're identifying, and linking to care and getting them on treatment, regardless of their ability to pay, is going to be critical.
Reporter #1: Hi, Dr. Smith, I guess my question goes to certain biomarkers or certain numbers of racial and ethnic disparities in clinical trial numbers, and how once the trials are constructed, they just enroll them as they please and whoever comes in, comes in. And we know that that is a disproportionate number of what the outcome is. How do you intend to address that in the future when you have new markers? You have IL-2 and IL-8 [interleukin]. You have certain things that you know are markers of racial and ethnic disparity, and yet they don't get added on to the trial. They're not done by prevalence numbers either. So it's just a number that gets tallied and then, "Oh, this should be looked at further in AA [African-American] populations later."
Kimberly Smith: Well, one of the challenges of the past has certainly been that clinical trials have not done a good job of enrolling people of color. If we look at the evolution of clinical trials from the early studies that looked at some of the initial antiretroviral therapies, even though the numbers of blacks, in particular, were high at the time that the studies were being done, you found some of these studies that had 80% or 90% Caucasians, and mostly men in them. We have evolved though, I will say that. To the point that now, for example, in ACTG [AIDS Clinical Trials Group] naive clinical trials, typically more than 50% of the enrollees are black or Hispanic.
We have evolved in there. There's a lot more ability to answer some of these questions because we actually have the populations enrolled in the trials now. And industry trials lagged behind, but actually are starting to catch up now too. And so some of the trials that I'll present tomorrow, the reason that I can present them and feel confident that their data are meaningful is because of the fact that the enrollment did adequately represent blacks and Hispanics in those studies.
Now, with regard to some of the questions that you raised about biomarkers, and some of the potential genetic markers of increased risk of infection, or genetic markers of increased toxicity to medications, we've actually because of the better enrollment in those clinical trials have been able to answer some of those questions. For example, the fact that we know now that blacks may have a higher likelihood of having CNS [central nervous system] toxicity to efavirenz [EFV, Sustiva, Stocrin] because of some differences in metabolism. The answer to that question was only able to be obtained because of the fact that we had studies that had large enough proportions of individuals in them to be able to see variations in genetic markers of metabolism.
And so I do think that we're moving forward. I can't say that we have all the answers. And for a number of trials, other than naive trials, the enrollment of people of color is actually still very poor. But I think we're making progress.
Reporter #2: I'm just interested to know if there's any wanting to look at the folks and how they present, how they conduct themselves as far as risk factors, and more specifically, risk factors as far as degree of risk, and also trying to avoid HIV because they would implement a certain type of sex, rather than something that's more risky.
Kimberly Smith: Well, it sounds like what you're sort of asking about is, are black folks doing serosorting type of behavior? And I think much less so than in the gay male community. I think that part of our challenge is that a lot of the black community has not perceived itself to be at risk, based upon the history of how we understood -- the evolution of how we understood risk of HIV in the United States. And so I do think that it's a very different response to the disease. And so for example, for black women, the challenge is, people still have the perception that you can look at somebody and decide if they're HIV infected. And as long as we continue to have misunderstanding on that level, we're not very effective at protecting ourselves.
One other point that I want to make, and that I'll make tomorrow, is that I think it's really important that we consider all of the things that are playing a role in the high numbers in the community. And one of the things that we don't talk about enough is the high rates of incarcerations in the community. And so high rates of incarceration, I'll talk tomorrow about a study that was published in the last year that showed a large number of men in Georgia prisons that became HIV infected while they were in prison. And so we take situations like that -- and we know there's a really hugely disproportionate number of black men that are incarcerated. Those men are released, come back into the community and HIV continues to be spread. It's actually sort of parallel to apartheid in the old apartheid days.
So I think that there are so many things that are complex in understanding HIV epidemic in the black community that it's hard for me to get it all done in a half hour. I'm going to talk really fast. But I think that the fact that we're having this conversation at this meeting, a research meeting, is really a move forward because it means that the research community recognizes that it has a responsibility in figuring out how we can do studies and how we can make plans that will help us to stem the tide of these disparities.
This transcript has been lightly edited for clarity.
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