What was your first treatment regimen?
Viread [tenofovir] and Reyataz [atazanavir], one pill [of each drug], twice daily. Also, at the time I wasn't working. I had to take some time off school, and I had to take some time off work. At that time, I was very, very, very sick. At the time, I was still functioning, going to work, but my doctor asked me to take time off so that I could focus on my health care. My doctor and my nurse have always been a team to me. No decisions are made without them being explained to me. I either agree or disagree or try to come up with some other plan or action that would work best for me, that will be conducive to my schedule. For example, when I first started my medication, I was taking pills twice a day; now I'm taking pills once a day because my schedule has been very hectic. I'm less likely to forget my medication if I know I only have to take it once a day. I fit it into breakfast time, or lunchtime or dinnertime, so I won't forget.
What are you taking now?
Currently, I'm taking Epzicom [abacavir/3TC, Kivexa] and Reyataz once a day.
How is your health now? You've rebounded, obviously. Do you feel better than you did when you were first diagnosed?
After a month of treatment, my numbers began to turn around dramatically. After a month, I went to a 200 CD4 count and a viral load of maybe 100,000. Now I have an undetectable viral load and a CD4 count of 625.
At the same time, after a month of treatment, my doctor (who was also the director and CEO of the Horizons Project) offered me a position as a peer advocate. At the time, I was really reluctant to take the position because I felt that I didn't know much about HIV, and I felt I was so stupid for being infected with HIV. How could I help somebody else? How could I be an influence to somebody else [who is] living with HIV when I can't even influence my own life? Besides, my knowledge of HIV was little to none. She saw something in me that I didn't.
She was your doctor?
Right. She was also the director of the Horizons Project.
Is she African American?
No. She's Caucasian.
Do you feel like you're getting the best possible care from her? Do you have a good relationship?
Yes, I wouldn't trade her for the world.
When did you first realize you were African American?
[Laughs.] All my life.
Did you ever experience a defining moment in your racial identity?
All the time I have experiences with racism and racial profiling. Just based on how I look, people sometimes perceive me as something that I'm not. Even being discriminated against based on my HIV status. Some people know my status and don't want to socialize with me or talk to me because of that.
My first real encounter with racism was maybe two years ago, when I was in school. Something the instructor said really rubbed me the wrong way. I answered a question correctly, and he made a comment about, "We do have an intelligent one in our class. He's not from what they call, 'the hood.' He can speak like he's over here with us. You wouldn't think he's from what you would call the hood." Everybody thought that was so funny. There were only three African-American people in the class, including myself. That really didn't feel right, that he was trying to stereotype the fact that because I'm black I live in the quote-unquote hood and I couldn't be intelligent at the same time. I think that was my first experience [with racism]. I always knew that racism existed, but that was the first time I actually experienced it. It really brought something to the forefront of my mind: Racism is still here.
What is the biggest challenge facing the African-American community today, in terms of HIV?
I think the biggest challenge is ignorance, stereotypes. Believe it or not, in the African-American community, I think the fact that everything is so segregated [is a problem]. You have your heterosexual men. You have your heterosexual women. You have your homosexual men. You have your homosexual women. "Because I don't fit into this class, or this group of people," [people think], "this information doesn't pertain to me."
I think that, within the African-American community, that's the biggest problem: stereotyping. It's commonly associated with HIV. One thing is that there is no such thing as a gay black man in African-American society, so [because we exist at all] we are already looked down upon. Then, the fact that HIV is a gay man's disease, that puts us even lower on the totem pole. I think the community is segregated and people look at it as a hierarchy. "Oh, I'm gay, but I'm not HIV positive. So the HIV-positive gay man is lower than me." I think that whole mindset is really detrimental to us as a race, because we are not given a lot of information or [we're] reluctant to get a lot of the information because we won't receive it [well].
Is there an aspect of African-American culture that gives you strength in your work with youth and HIV?
I don't really think that my strength comes from my culture, per se. I think my strength just comes from being a human being -- being an individual who wants to help people regardless of what color you are, your sexual orientation, what you've done in the past. I'm focused on what you want to do currently, and if being tested and being educated about HIV is what you want to do currently, then I'm the person to help. I don't really look at it as being a cultural thing or a personal thing. I look it as a people thing. I will help any person who wants to come and get information or come and be helped or wants to be tested or wants to help somebody else, in regards to HIV or just people in general. I think that's where my strength comes from: knowing that there are people that want to be helped, people that need the help and don't know how to get the information or just knowing that I'm out there to give the information to whoever wants to receive it.
What's the biggest change that you would like to see in HIV treatment, prevention or education for the African-American community?
The biggest change that I want to see is the fact that, a lot of times, the whole topic of HIV is kind of pushed under the rug, because it's so scary. People are in fear of what they don't know. If you learn about [HIV], you will no longer be in fear of it, but people are so in fear of it because the media and society has perpetuated [the image of] death all the time with HIV. "HIV equals death." That's not necessarily the case. ... You don't hear [about] ... the people who are doing well and living normal, full, fulfilled lives being HIV positive. You often hear about the people [who] are dying from [HIV] or having complications from medicine, or things like that. They [-- the media, society at large --] never talk about the [HIV-positive] people [who] are graduating from law school, or the people who are on tour like us [-- Operation: Get Tested, a U.S. tour of college and high school campuses where HIV-positive young people encourage students to get tested for HIV, sponsored by Who's Positive]. [Many people] are living fulfilled lives and having fun and living life to the fullest, just as if we didn't have HIV.
Don't get me wrong; I'm not advocating that people go out and get [HIV] because there are treatment options and things like that. ... I'm saying that I want people to know about it. I want people to treat it and embrace HIV-positive people the same way they would embrace someone who is suffering from breast cancer or someone who has lupus. Because so many different stigmas are attached to HIV and people are just in fear of it, they don't want to embrace it. I think that's the one biggest thing that will help with care: The more [people are] receptive to [learning about HIV], and the more they're willing to embrace each other and treat people who are living with it the same way they would give someone attention who is suffering from breast cancer.
... I think they have treatment options in a hierarchy as well. If you have cataracts you are on the top [of the] pole, and if you have HIV you are on the lower end. ...
Who creates this treatment hierarchy -- the medical profession?
To an extent, yes. A lot of medical professionals, ironically, don't know about HIV themselves, so they don't know how to treat people with it. Often times [they] shun away from giving the best care possible [to people with HIV].
Do you think they've created this hierarchy purposely or out of ignorance?
I think it's out of ignorance and fear, fear of what they don't know. As well as society -- people in general ... people just feel discriminated against because of being HIV positive. ... With (health) insurance companies they want to raise the premiums. It's illegal for them to kick you off the insurance because you're HIV positive, but they'll raise the premiums so that you can't afford it. A lot of times we have to turn to government assistance. Even with jobs, they want to lay you off ... because you have an ongoing illness, but if someone had cancer, they'd let them work until they can't work anymore. I think because they have fear of [HIV] and people don't know [how HIV is spread]. You can't get cancer from being around someone; they don't realize that you can't get HIV from being around someone. [It's] that fear of being around someone [who's] positive or interacting with someone because they know that it's a [disease spread through contact]. They kind of shy away and don't know and often discriminate against [HIV-positive people] even with housing and things like that. ... People don't want people with HIV living in their community. ... People aren't as accepting of it or as willing to provide as many services or [as much] care for people going through this, because they don't understand what people living with HIV are going through. They don't take the time out to learn or find out what's going on. I think that when that happens -- [Crying.] Excuse me.
It's OK. Take your time.
I think, when that happens, care and services for HIV-positive people will get better, but it has to start somewhere.
Working with youth, what are your fears and hopes for your generation, and especially for young African Americans, as they face the risks of HIV?
My fear is that, you know, a lot of times people say that this is an epidemic. Yes, maybe it's an epidemic now, but later my fear is that it will be pandemonium. Yes, it's an epidemic now -- let's get it taken care of now. I think that for our nation, or for our people coming up, the younger people, the information is getting out there. More people are talking about it. I can see the change from the older generation to the younger people.
The older generation has a mindset that if we don't discuss it, [then] it's not happening. [That] really wasn't beneficial to them, because a lot of the older people I talk to really don't know a lot about HIV. It's never too late to learn, but I want to say, "Alright, this [HIV] has been around longer than I have, and you mean to tell me that you don't know anything about it?" I find that very fascinating. It baffles me to see that.
I think, for our future people coming up, the information is getting out there. More people are aware of [HIV]. I think the more we talk about it and the more it becomes part of the general conversation, [the better]. ... The more you talk about it, the more information you learn about it, the less scared of it you become. ... I think more people are talking about it. I think it's in the news more than ever. A lot of research is going on for different things [related to HIV]. I think there has been a change. I think it continues to change. I just don't want to see a change for the worse.