When did you first realize that you were African American?
Now that's a good question because I was this light-skinned child and my family talks about how I one time put a note on the bathroom door that said only white people could use the bathroom -- and by "white," I was referring to myself and my cousin Joyce, who is also very light. So believe it or not, that is my memory as a kid: Somebody ruining my whole picture by saying, "Dude, you ain't white!" I had to be about three or four years old when that happened -- when I first realized I was black, because I was like, "What do you mean I'm not white?"
To what extent have you experienced racism in your life? How have you learned to deal with it?
I have on some levels experienced racism. However, I believe that because I am articulate and intelligent, I don't experience it on the level that a lot of brothers and sisters do. I get that "You're not one of 'Them'" mentality from a lot of people, which is just ridiculous. I mean, if I were still that three-year-old kid who thought I was white, it would be great: "You're right! I'm not one of 'Them!'" However, that's not the reality. I am "one of 'Them.'"
One thing that I pride myself on is that I'm the same person whomever I am around. Whether I am talking to someone I'm interested in dating or I'm out with my friends, it's pretty much all the same. I don't revert to slang talk when I'm in the hood, per se, not any different than I would when I'm on the job. If I need to use slang, it's for a reason, regardless of where I am.
What is the biggest challenge facing African Americans today in terms of HIV?
The stigma! The stigma about HIV, the stigma around sexuality, stigma, stigma, stigma.
What HIV risk factors are of special concern to African Americans?
Again, the stigma. Because if we don't address the stigma, people are not going to feel comfortable about their sexuality or about disclosing their HIV status, and we just keep this never-ending cycle going of "don't ask, don't tell" and new infections.
Are there any specific aspects of African-American culture or identity that give you strength?
One thing that both helped and hindered is the church, because the church perpetuates that stigma. At the same time, it's where I found my spiritual base. And definitely the strength of our ancestors helped. Black people, African Americans, have such a rich and strong heritage. You know, reflecting on Dr. King's legacy and then applying that to my own life gives me strength to continue to move forward.
What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?
I would like to see a real dialogue. I would like to see us begin to put the real issues on the table: poverty, illiteracy, racism, sexism, classism. And then I would like to see more solid and sound research as to what puts people at risk. Whether we're talking about race or gender or sexual orientation, there's not enough research about the lifestyles of these people who are at highest risk for HIV. We're constantly trying to develop prevention programs, get people into treatment, yet we don't know anything about them. So I think we need to get more research-focused.
Do you think the Bush administration is doing enough for the black epidemic?
No, I don't think the administration is doing anything at all, and I think that is really unfortunate because there's so much they could do. The first thing is they could remove personal moral beliefs and issues from the picture -- they're getting in the way of the work that needs to be done.
How would you grade Bush's performance?
I'd be really, really, really nice and give him a D-minus.
What are some of the main myths about HIV that you hear in your community?
There are a lot of different myths about how HIV is and is not transmitted: Can you get it through oral sex? Can women transmit it to men? Yes! I still hear that it's a gay, white, male disease; that it was invented or concocted by the government to kill blacks and gays; that there is a cure and Magic Johnson has access to it. I hear all of that.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
I hope that we will let go of our prejudices and lift the stigma that currently exists around HIV, and begin to educate ourselves and mobilize to eradicate this virus from our community.
What has been your experience with HIV treatment?
When I was first diagnosed, I went on treatment almost immediately. My first doctor recommended it. And it was horrible! I was 18 years old -- I'm a social butterfly now and I was even more so then -- and it just completely took away my drive and motivation. I didn't want to get out of bed, it made me feel so tired. The pill burden was high at the time, and ddI [didanosine, Videx] was this chalky white thing that was horrible to take. You had some pills you had to take with food, some you couldn't take with food, some you had to wait an hour after eating -- it was just a horrible schedule that totally interfered with my young life, so I just said, "I'm not gonna do it. I would rather allow the disease to just run its course."
Did mistrust of the medical establishment play any role in your decision?
It did, but not a big role. I think I still have some mistrust, though -- and I don't think that will ever go away. HIV is a big business, and as long as people continue to get HIV, pharmaceutical companies, especially, will continue to make money off it. If I were a pharmaceutical company making millions and millions of dollars a year from people buying my drugs and I stumbled across a cure, I'm not so sure -- even being the good-hearted person that I am -- that I could let it go. So I know that somebody who doesn't give a damn about people is not going to think twice! That's just the reality of the world we live in.
That doesn't affect my views on treatment, though. Right now, we have to go with what's available. We don't have any other choice. So be skeptical, do research, continue to look for the cure, but do what you gotta do to stay alive until we get there.
So you stopped taking the meds and then ... ?
I believed that by some miraculous feat, somehow God would spare me -- until I got sick! Then I started to realize that this was serious and I had to do something or I was going to die. And at that point I was even okay with dying because I remembered what the treatment was like. And I was overcome by the stigma -- self-stigma included -- and I didn't want to deal with what people thought or said about me.
What happened when you got sick?
It started in 2002, when I was 25 or 26 and living in North Carolina. I'd gone home to visit my mom and grandma for Mother's Day, and I started to get ill all of a sudden with what seemed like a stomach flu. I had constant vomiting, constant diarrhea. I realized that I needed to see a doctor.
I didn't have health insurance, so I had to go through the public health system in North Carolina. Their resources are very limited and there are waiting lists. It took me about two weeks of calling every day at this set time between 8 a.m. and 9 a.m. to get an appointment -- and it was for about three weeks later.
I was losing weight fast, not able to hold anything in my stomach, and ended up in the hospital before I even got to that appointment. It was very deep and very scary. When I finally did see a doctor, I had 30 T-cells and a viral load of hundreds of thousands and was about 50 pounds underweight from the constant diarrhea, vomiting, nausea, all of that. I was diagnosed with MAC [mycobacterium avium complex, a serious AIDS-related opportunistic infection]. It took almost two years to get over that -- I was hospitalized several times for extended periods of time. Once I had MAC in my lymph nodes, and somehow my intestines wrapped around one of my inflamed lymph nodes and caused a blockage. It took my medical team forever to figure that out.
What HIV medications have you been on?
I started in 1994 with AZT [zidovudine, Retrovir], 3TC [lamivudine, Epivir] and ddI. Then when I tried to go back on, it was the combination of Sustiva [efavirenz, Stocrin] and Combivir [AZT/3TC] -- but I was allergic to Sustiva and it gave me a horrible rash. So I got off that. Then I had to try the protease inhibitors -- first Viracept [nelfinavir], then Reyataz [atazanavir], which turned my urine the color of Coca-Cola, so I cut that, and finally Kaletra [lopinavir/ritonavir], which seems to be the protease inhibitor for me. Viread [tenofovir] is the only drug that's been consistent throughout my whole regimen. And I'm back on ddI again, which is Videx-EC, a very easy-to-take, once-a-day pill now. It was reformulated so it wouldn't be that big chalky-ass pill!
How do feel about your meds now?
I'm very okay with my meds now. I educated myself on how they work, exactly what they do in fighting the virus.
Do you experience any persistent side effects?
Aside from what I talked about earlier, diarrhea is something that comes and goes.
How would you rate your ability to take your meds on schedule?
I would say I'm about 95 percent compliant. I have the most trouble, honestly, because of my schedule -- working full-time and being a full-time student.
Do you have any special rituals or preparations that help you remember to take them?
No, because I'm only on a twice-a-day schedule. I do the morning dose when I first get up and the night one when I go to bed.
How did you choose your current doctor?
I chose him through recommendations from TPAN. The doctor I was seeing before had some personal issues that really prevented him from giving me the attention that I needed. I was severely ill, and we were just sort of masking it with pain medications.
How often do you see your doctor?
He likes to see all of his patients once a month because he feels that it's better to be on the up, so if something's wrong or you're noticing an increase in viral load you can take care of it right away -- and I'm in agreement with that, totally. However, I don't like going in there once a month! So I see him about every six to eight weeks, and he's okay with that.
Do you think you are getting the best care possible?
Is your doctor an African American?
Do you think an African-American doctor can understand and treat African-American patients better?
No. My doctor is also gay and HIV positive, and I think that he is totally culturally competent and knowledgeable about HIV and about gay men's health, period, which enables him to provide me with the best care. I recommend all my friends to him, even those who are negative, because I think it's important for gay men to have a doctor who understands gay men's health.
It sounds like you have a good relationship with your doctor.
Yes. I can call him anytime, about anything. Whether it's about myself or about a friend, he takes the time to listen, and he's just very open. Also he is very community-centered -- it's nothing for me to see him out at a social event or a club. And I really like that he's normal and down-to-earth, not puffed up about being a doctor.
Does your doctor treat you like a partner in terms of making decisions about your health?
Definitely! But that's also because I don't give him a choice.
Do you have a particular health regimen that helps you stay well?
When I'm stressed, I take long, hot baths. I can wash the stress away and allow myself the time to just be still and bring my mind and spirit to ease. And I read, and I make sure that I spend time with my family.
This may sound morbid, but one thing that I have really grown to love is to go to my grandmother's house -- where my grandfather passed -- and lying in his bed and taking a nap. I do that very often, especially when there's a lot going on in my life. I lay in my grandmother's bed, and I go to sleep, and I get close to him, and that helps a lot.
And I also drink dirty martinis in honor of Charles Clifton, because he is the person who I say birthed me into this HIV activist, and I always want to honor that.