Who Are We Hurting?
The Hesitation by People of Color
I've been thinking a lot about the importance of participation in clinical trials by people of color. I hear about the need for this inclusion almost every day. The cries seem to be somewhat endless. In fact, I hear it coming out of my own mouth.
There has traditionally been relatively little proportional involvement of people of color in clinical trials research for HIV disease. Is this lack of involvement the result of exclusion or merely just a lack of interest? The majority of volunteers have always been gay White men. That's pretty much just how it's always been. But its not like we haven't been asked to participate. The invitation may not have been immediate. But who needs an invitation to save their life?
Even still, we live in a time where there are 21 FDA approved HIV antiretrovirals -- even with the relatively small numbers of Blacks or Latinos involved in HIV research. So is it a bad thing that so few of us have been involved? Thus far, all of the approved antiretrovirals seem to be pretty effective and relatively safe in people of color -- again, despite the lack of overwhelming numbers of Black and Latino volunteers who helped make the safety data possible. I don't hear too many stories these days about AZT killing Black folks.
So why then is it so important that people of color participate in HIV clinical trials research? Especially when, without any real effort on their part, Black and Brown people with HIV and AIDS reap the clinical and life-saving benefits of ARV therapy?
But are they really reaping these benefits? I wonder. Lately, I have seen a few reports that despite the advent and widespread use of powerful agents to control viral load and increase CD4 cells, low income, disenfranchised people of color are less likely to receive HAART (highly active antiretroviral therapy) than their White counterparts. Why is this?
I know times are tough and ADAPs (AIDS Drug Assistance Programs) are strapped, but this seems a bit one-sided. This must be a totally different situation than in the real world where African Americans and Latinos receive the same level of care as Whites across the board, right? Aren't African Americans and Latinos with cancer, diabetes and heart disease offered the same cutting-edge procedures and new medications that save the lives of White people every day? Of course they aren't.
At the same time, African Americans and Latinos are less trustful of the medical establishment and more likely to rely on already over-burdened and under-funded public health systems for little more than acute care. The legacy of Tuskegee is all too real for many of us. Many African Americans and Latinos have deep and sincere cultural reliances on non-traditional therapies, including faith, and in some cases, deep denial.
But how and in what world is any of this okay? The CDC (Centers for Disease Control and Prevention) estimate that African Americans accounted for over half of all AIDS cases diagnosed in 2002. Isn't this a public health emergency? If it isn't, I wonder what it would take to qualify. Given these numbers, how can it be that people of color are not offered the same treatments that Whites receive everyday, which we know will extend and improve their life? Given these numbers, why aren't African Americans and Latinos breaking down the doors of their local HIV clinic or rioting in the streets demanding those regimens? If memory serves, gay White men did that in the eighties. It resulted in the first of many treatments for HIV -- twenty one at last count.
But clinical trials research for HIV long ago stopped being a selfish endeavor and we already have 21 approved antiretrovirals. Isn't that enough?
Few clinical trials these days offer access to unapproved medications for the very ill in the way that was the norm just five years ago.
As is the case in most other diseases FDA approval takes ten years and volunteers for clinical trials are altruists, contributing to the health and benefit of those to come. Here, too, we have a problem, because as we know, there are few people of color participating in HIV clinical trials. Aren't African Americans and Latinos invested in the welfare of others? Their own?
Even the United States government seems to be very concerned right now with the threat that HIV poses to people of color -- but only on other continents. Even Oprah has taken a very keen interest in the horrific tragedy of AIDS orphans in South Africa (I love Oprah). So why are there so few people of color volunteering to make a difference in the lives of other people of color? I'm haunted by the line from The Matrix: "It's the sound of inevitability."
I believe there are so few people of color involved in clinical trials research for the same reason people of color remain at higher risk for HIV infection, which is the same reason why we aren't knocking down the doors of our local HIV clinic and rioting in the streets. The issues of racism, sexism, discrimination, poverty and self-hatred are pervasive, overwhelming and ultimately lethal.
Within a few years, there will be more Blacks in Africa participating in HIV clinical trials than the number of American Blacks who have ever participated in HIV clinical trials. This is astounding, except when you consider that their continued existence is dependent on enrollment into clinical trials that provide otherwise unavailable and cost-prohibitive treatments.
But the CDC says that in 2000, HIV/AIDS was among the top three causes of death for African American men ages 25-54 and African American women ages 35-44. Doesn't that somewhat suggest the continued existence of African Americans may be similarly dependent? Oh, that's right. We already have those 21 drugs. It's a good thing we don't need any more or an HIV vaccine.
It seems kind of a shame that the VaxGen trial, while not designed or powered properly to rely on the results, did suggest that there was a benefit for African Americans that was not observed for Whites or Latinos. But we don't really want a vaccine that works only in African Americans anyway, right? So we don't need to join the trials.
Aside from the realities that we need more than 21 antiretrovirals and that African Americans and Latinos care about others and their own, I don't have any real answers. Everything I've said has been said before and met with silence and inactivity. I don't think there is a simple answer. That would be far too easy. There may not be an easy answer. But I'm sure there is one. We just need to think harder and do more to find it.
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