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HIV/AIDS Resource Center for African Americans
Kai Chandler Lois Crenshaw Gary Paul Wright Fortunata Kasege Keith Green Lois Bates Greg Braxton Vanessa Austin Bernard Jackson

Keith Green

January 2006

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African-American Identity and HIV

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?

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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.

HIV, Health Care and Treatment

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?

Absolutely!

Is your doctor an African American?

No.

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.

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This article was provided by TheBody.com.

See Also
More Inspiring Stories of Gay Men With HIV


Reader Comments:

Comment by: Recently diagnosed. (Colorado) Sun., Feb. 10, 2013 at 2:18 pm EST
I loved reading your story because it is similar to mine.
Four days ago I was recently diagnosed with hiv, being positive at 20, now I know my life is going to change a lot. I thought this was a death sentence for me, wanting to drop out of school, work a lot and wanting to just live my life I realized I can't change myself in a negative way because of this. I must now look at my life in a positive way, become a better person not just for myself but for my family and friends. In these four days I've gotten more in touch with myself, and closer to my family, I live each moment like its my last and I cherish every single second of my life knowing I have a voice to change me and others about being positive in life.
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Comment by: C (NORTH CAROLINA) Wed., Sep. 29, 2010 at 3:57 pm EDT
i REALLY LOVED READING YOU ARTICLE AN FEEL AS THOUGH YOUR A VERY COURAGEOUS BLESSED YOUNG MAN. i WAS TESTED 5 DAYS AGO AND LUCKILY MY TEST CAME BACK NEGATIVE. IT WAS THE LONGEST COUPLE OF DAYS I'VE EVER HAD TO ENDURE,I'VE BEEN WITH MY MAN GOING ON 7YRS NOW AND WE BOTH GOT TESTED WHEN WE STARTED DATING BUT HADN'T HAD A TEST SINCE THEN. I'M ALSO DOING SOME VOLUNTEER WORK AT OUR HEALTH DEPARTMENT TO RAISE AWARNESS BECAUSEE THIS COULD HAVE EASILY BEEN ME. FOR ME AND MY PARTNER WE SEE HOW IMPORTANT IT IS TO BE TRUE TO ONE ANOTHER TO KEEP THAT NEGATIVE STATUS. HOPEFULLY MY COMMUNITY WORK CAN HELP OTHERS GET TESTED AND KEEP THAT NEGATIVE DIAGNOSIS.
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Comment by: JENNIFER (SOUTH AFRICA) Sun., Jul. 11, 2010 at 9:39 am EDT
IS A GOOD THING TO TALK ALL OUT AND IS A BRAVE THING TO TO KNOW YOUR STETUS. AM TOO SCARED TO TEST AND MY BOY FRIEND TESTED TWICE AND HE WAS NEGATIVE. AFTER A RAED YOUR STORY YOU GAVE ME POWER AND STENGTH TO WANT TO KNOW MY STETUS AFTER ALL BEING POSETIVE IS NOT THE END OF LIFE.
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Comment by: 3 day old diagnosed (nairobi kenya) Sun., Jun. 13, 2010 at 12:50 pm EDT
Hey i admire your strength n right now i guess its all i need as its nerve wrecking for me.Scared stiff at the stigma attached to hiv +ve people let alone Gay hiv+ve. I havent told anyone so far though hinted to few friends about what they think if they found out that someone close they know is positive n the response is so far positive but i think for how long.Been on the net tryingto get as much info as possible n reading stories of people living strong with it n thats what i want.So you are going to be one of my pillars of strength.much love
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Comment by: (ARKANSAS) Wed., Mar. 17, 2010 at 9:17 pm EDT
thank you so much for your story.my brother has been living with this secret of being HIV POSITIVE for awhile and it has drove him to become almost insane.by the GRACE OF GOD family alerted me and we where able to get him some help.PLEASE KEEP HIM IN YOUR PRAYS.MY BROTHER TRIED TO KILL HIMSELF PLEASE PEOPLE LOVE AND DONT BE SO QUICK TO JUDGE SOMEONE YOU NEVER KNOW WHAT A SIMPLE SMILE COULD MEAN TO SOMEONE WHO FEELS LIKE THEY HAVE NOTHING TO LIVE FOR! GOD BLESS YOU ALL.PS I DONT CARE HOW HE CONTRACTED THIS I STILL LOVE HIM THE SAME!FAMILY AND FRIENDS YOU ARE VERY IMPORTANT TO THE SURVIVAL OF YOUR LOVED ONE REMEMBER THEIR NAMES ITS NOT HIV POSITIVE! I CALL MY LIL BRO SWEETIE PIE(HE HATES IT) SMILE
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Comment by: tumble (united kingdom) Sun., Feb. 7, 2010 at 6:03 am EST
thank you so much for your inspiring message and taking the time to share with the rest of us. l am newly diagnosed and am still going through a lot of emotions. l was so glad that you touched on the dating thing because that has been playing on my mind a lot. l agree, its not up to us (HIV positive) people to decide for another that its ok to have sex without disclosing just because you use protection. l feel more anxious about it cause l became positive due to someone making a choice for me. lt would have been nice to have been given the chance to choose. l am not gay, but l feel reading your articule is of great help to me in this hour of great need. I have not disclosed to my family yet, only my best friend knows. But l will, when l have battled the monsters and anger within. Once again, thank you so much
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Comment by: Joy Morris Hoightower (Chicago) Mon., Jan. 25, 2010 at 9:40 am EST
Keith I love you. You've inspired me ads well
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Comment by: S.K. (East Africa) Tue., Sep. 22, 2009 at 4:23 am EDT
Thank you very much for sharing the information. i always pray to god when i get up from my bed i give thanks to God and when i sleep also i praise for him God is the healer and savior of all diseases i believe one day God healed everything just trust on him
So brother if you would like to chat with me this is my email address palmakb@yahoo.com
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Comment by: Scaredoutofmymind (New York) Thu., Aug. 6, 2009 at 10:14 pm EDT
Just reading your story has made me cry my eyes out, Thanks for sharing this with us. I was diagnosed just a yr ago and my life has changed drastically. I'm only 25 and the fear that I'll never find love, have a family taunts me everyday that I feel like just ending it all but having read this brings such hope and a positive feel to just keep living life to the fullest and not give in! thanks again. The fact that you were diagnosed that young and had such a low cd4 count (and coping well) at the time has made me realise that there is hope for myself with a 286 cd4 count. I really thought it was all over and was just waiting to die actually praying to God to take me. Well I continue to educate myself although I have not disclosed this to anybody for the fear of being rejected and judged. (just been able to tell my best friend) I'm not dating and certainly not sexually active, just keeping to myself, focusing on my health and just bettering myself. Do you have any advice on dating as a female? Well I wish you all the best and success in life!!! :-0 geecee_usa@yahoo.com
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Comment by: viola Held (Tanzania East africa) Fri., Jul. 31, 2009 at 11:00 am EDT
hi brother, am very proud of you and i would like to chat with you so that can lead me to survive in this hard situation i face my email vainjau@hotmail.com i like to chat with you and be a good fried for this hard time to me, i never agree myself pls advice
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Comment by: zuhra m. hassan (east africa ) Wed., Jul. 29, 2009 at 6:50 am EDT
i real support you am one of your family its pain but is the situation we face now i like to chat with you if possible.
zuhra
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Comment by: Alfred O. (Nairobi Kenya) Tue., Jun. 30, 2009 at 2:06 pm EDT
Thank you very much for the encouragement. Am also H.I.V positve and gay of course. I join seminary but they had to sent me home after I was tested positive though they did not know that am gay. Am struggling now with life and I'm asking for support from anyone who is ready to support people like me. I believe God will bless you. I'm an orphan and no one wants to associate with because of my status. If you can help me in any way just communicate to me through e-mail domnicouma@yahoo.com.
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Comment by: Thabisa (Port Elizabeth, SA) Thu., Jun. 18, 2009 at 4:20 am EDT
i was told i was positive last year 24 Dec 09 and i was still pregnant at the time. i'm always a positive person and i knew there is life after HIV. i didn't see any reason to be miserable, though i do feel very hurt when i really think of it. the main thing for me is that i make sur ei don't think about it more often, even if i do i try and think positive. my main problem now though is that i am still smoking, though i know i have TB as well and on treatment. it's real hard for me to stop, it's like when i get my moments of stressing, smoking keeps me sane but i know it's only psychological. i feel that if i don't smoke i will be taking my future away mostly now that i have a beautiful baby girl 3 mnths old. i need to do all i can to stop smoking bcoz if i did it during my pregnancy i can still do it. buhle is still very young and she needs me a lot and the last thing i want is take the pleasures of having a mother from her.

i get scared sometimes thiking that i might leave my baby earlier only bcoz i am hiv and smoking mostly now. i have tb as well. i can do this i can stop if i put my mind into it. i got to i know for myself first and most of all my princess. to all you out there living with hiv, just know and remember that God is the best and he is always here to hear your cries. He is great God and He cares for you and believe me when you told you not alone you really are not alone ok.
Keep your head up high and keep doing what makes your world whole and loveable to you.

you are a star and lots of hugs and kisses for you.
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Comment by: A concerned Mother (Texas) Fri., Jan. 2, 2009 at 1:46 pm EST
Thank you very much for sharing this information. My son was just diagnosed with Hiv on 12/26/08. I always have a delayed reaction to things. I have already taken the action to let him know that he is not alone and that I still love him no matter what. He is going to the health dept today 1/2/09. He was released from the hospital on 12/31/08. His t cell count is 380 and for a while I was concerned. My best friend emailed more information to me and I am doing my research and feeling more positive about him having a healthy and happy life. I would like to ask what is it that I can avoid doing or saying to make him uncomfortable? I did share my feelings about how i feel about this but explained that I will always be there for him and love him.
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Comment by: optimistic (lAX) Tue., Sep. 23, 2008 at 7:49 pm EDT
I just wanted to say thank you for your truthfulness which is needed in African American community... if people could learn to be honest and talk about sexuality in homes, schools, churches, mosques, temples, etc... we would all gain a healthier perspective on who we are as humans.

once again, thank you
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