Let's Talk About It
Learning to Trust, Again
"Brother, brother, brother, there's far too many of you dying"
I hadn't given it a whole lot of thought before now. My close friends and family had all commented on it, and of course I had noticed it, but it had never really bothered me like it did today.
As I placed the makeshift ice pack onto the finger that I had just slammed in my car door (ouch!), I began to really pay attention to just how dark my hands had turned. I had first noticed it while I was hospitalized a couple of months back with issues pertaining to my digestive system. I don't know what caused the darkening of my skin or exactly when it began. I have tried to trace it to a particular medication, but I am on so many that the task is nearly impossible.
I spoke with a brother from my support group here at TPAN, Brothers United in Support (BUS), who I've noticed is experiencing the exact same thing. But he is just as clueless as I am. I have asked several people in the medical profession and none of them seem to know.
Upon approaching my partner with my concerns today, he reminded me of the importance of African American participation in clinical trials. At first I really wasn't trying to hear him, because all I was thinking about was how I was slowly losing my "high yellow" complexion that I had grown to love. At first, I couldn't see what clinical trials had to do with that. But the more we talked about it, the more I understood where he was coming from.
Since HIV was initially recognized as a virus that only affected the gay, White community, most of the initial studies and research concerning the virus and medications that would be used to treat it were done on gay White males. African Americans and women were generally not a representative part of these studies and therefore, information on how the virus affects us specifically and how we react to the medications used to treat it is still relatively limited. But my hands and face have turned at least five shades darker in the past three months and seem to be getting darker every day. I am truly perplexed and now I am desperately seeking answers.
When my partner was initially diagnosed with CMV retinitis, he was told that he was guaranteed to lose sight in both of his eyes. Upon hearing this dreadful news, he had planned suicide, not able to live with the thought of being blind for the rest of his life. Thankfully though, through a paid study that follows the development of the infection, he has gone through experimental treatments, as well as a couple of surgeries, that have restored his sight and given him a whole new outlook on life, a life that he now lovingly shares with me.
As we continued to talk, I gave thought to the reasons why African Americans do not participate in clinical trials, particularly in relation to HIV.
Like victims of abusive relationships, learning to trust again has proven to be a difficult task for the African American community. Being brought to this country as slaves against their wills and then denied basic civil rights for many years, even after being legally set free, has taken its toll on a community of people who have never really been able to comfortably consider this country their home.
To African Americans living in the 1930s, nearly 70 years after the signing of Abraham Lincoln's Emancipation Proclamation, the question of what freedom truly was still loomed. Racism and segregation prevented them from accessing equal educational, employment, as well as equal health care opportunities.
Being in good health was a Black man's only sure ticket to securing work of any kind (generally manual labor) that would allow him to support himself and his family. Missing a day from work due to illness would usually mean a day without meals for his wife and children. The cost of seeing a doctor in regards to that illness probably meant several days without meals.
Therefore, when the government presented an opportunity to receive free health care in a little town known as Tuskegee, located in Macon County, Alabama, hundreds of illiterate African American sharecroppers willingly responded. What the respondents were not told was that they were being enlisted in an experiment that was being carried out by the U.S. Public Health Service, designed to study the effects of syphilis on the human body.
Of the hundreds of respondents, 600 were accepted to receive free health care, 400 of whom had syphilis and 200 who did not. The catch, however, was that they were not told that they had syphilis, but were instead told that they had "bad blood." They were denied access to treatment, even for years after penicillin (found to be an effective treatment for syphilis) came into use in 1947.
When the study was finally exposed in 1972, 28 of these men had died of syphilis, 100 others were dead of related causes, nearly 40 wives had been infected and 19 children had contracted the disease at birth, which is now known to have caused mental retardation as well as many handicaps among them (from CNN Interactive's Tuskegee Study Web site). It was not until 1997 that the United States government offered an official apology for its Tuskegee experiments, which came through then-President Bill Clinton.
Fast forward to the year 2004. HIV is the leading cause of death for African American women between the ages of 25 and 44 as well as black gay men in the same age bracket. But before we can really begin to deal with the issue of African Americans not being willing to participate in clinical trials associated with HIV/AIDS, we must take a look at why we are dying from a disease that is preventable, with advanced medications available that are not only saving lives, but offer HIV-positive individuals a quality of life previously unobtainable.
Clinical trials are saving lives and improving the quality of life for those who are infected and affected with HIV. However, the fact that we as a community have neglected to participate in them, nor have we accessed of the proper care that is available and necessary to saving our own lives, is very frightening indeed.
The stigma that has always been associated with homosexuality as well as HIV/AIDS plays a huge role in helping to perpetuate this reality. Although my photograph rests on this page and you are reading my innermost thoughts via a journal that is geared towards the HIV/AIDS community, I am still not 100% comfortable with my AIDS diagnosis, and sometimes even my sexuality, as it relates to the African American community (95% maybe, but not 100). It is still not easy for me to have dialogue with people of color who are not gay, or not HIV-positive, about those subjects.
Don't get me wrong, I have these conversations. I am just not 100% comfortable doing so.
There are various reasons for that. One is because I know the views of the African American community towards homosexuality. In a lot of ways, we are like the military: "don't ask, don't tell." And if one does decide to tell, he/she is always associated with being "gay," and the rest of their identity, the most important parts, are disregarded or minimized.
Another reason is because I also know our views concerning people who contract HIV. I'll save the details for another article, but let's just say that those views are not pretty. The stigma associated with homosexuality and HIV/AIDS kept me in denial and in the closet about my own AIDS diagnosis for far too long and almost cost me my life.
So, we could say that the reason why African Americans do not participate in clinical trials and are dying of AIDS at such an alarming rate is because of our mistrust of the government, particularly due to the Tuskegee experiment. Many of us still view HIV as a government invention, designed to kill off gays and blacks.
However, it can also be said that the stigma associated with HIV/AIDS plays an even bigger role in this devastating dilemma.
In the spirit of an African American legend and one of my many role models, I propose to you a question that simply asks, "What is really going on?" Let's talk about it.
E-mail firstname.lastname@example.org. Write to Keith Green, TPAN, 5537 North Broadway, Chicago, IL 60640.
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This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.