What a difference a few years can make. When Victoria Williams was diagnosed with AIDS at age 31 in 1983, her outlook was grim. “I tried to use herbs to treat my symptoms ’cause there was nothing else available at that time,” she says.

Now 52, Williams takes HIV drugs every day to control her virus, and aside from a few symptoms caused by the meds and regular aging, she feels fine. But her own sister treats her like a pariah—warning her kids they might catch it—as if time had stood still since those squeamish early days when folks just didn’t know better.

The treatment advances that so quickly turned HIV from a sudden death sentence to a manageable lifelong condition make the 35-year war on cancer look like a playground rumble. But the hundreds of thousands of African Americans with HIV still face a tangle of issues—many having nothing to do with the virus itself—that make living with HIV much more challenging than, say, living with cancer or diabetes.

The fear and the myths and taboos around HIV go a long way in explaining why as many as 32 percent of all black people with HIV remain untested—and why, in turn, fully half of all new infections in the U.S. are among blacks. Our community has a lot of work to do to overcome denial and stigma—and it’s not up to the Victoria Williamses of the world to do it alone.

Thanks to Magic Johnson’s full-court AIDS-awareness campaigns, everyone from gangstas to grannies knows HIV is treatable. People once planning their funerals are returning to work, falling in love and even having HIV-free children (see “Good News for HIV Positive Wannabe Moms and Dads”). “Early on, I wondered if I was going to make it out [of prison] alive,” recalls Donald Staples of his 1992 diagnosis, 10 years before his parole. “But then with this medicine, I felt better—and I felt like I had a future."               

Wesley B. Carpenter, 53 / Chef / Washington, DC / Diagnosed: 1982

When he was diagnosed: I had mixed emotions ’cause I thought it was a death sentence. But it forced me to reflect on my life and allowed me to make some changes in how I was living at that time.
Twenty-three years later: I’m more appreciative of life and more spiritually grounded. I don’t think: “I’m living with the virus.” I like to say, “The virus is living with me!”
Message to negative folks: Educate yourselves, and stop being so quick to categorize people living with the virus.
What gives him hope: HIV positive people who aren’t dwelling on the disease and who are living life on their own terms. If I follow my regimen and continue to do as my doctor says, then I know I can stay healthy.
Sheryl Johnson, 55 / AIDS Activist / Atlanta / Diagnosed: 1996   

When she was diagnosed: I was devastated, but I got over it pretty quickly. I knew I could either manage my illness or I could let it manage me.
Nine years later: I’m not thrilled, but there are worse things than being HIV positive. I think I’m actually pretty fortunate.
Message to negative folks: People with the virus aren’t lepers. We’re normal, everyday people trying to live our lives like everybody else.
What gives her hope: I’m especially hopeful about microbicides, the anti-HIV gels, which will help women protect themselves better.

Ashely Ware, 16 / High school junior / Redford, Michigan / Diagnosed: At birth
Understanding her HIV: All my life, my mother told me that we had bad guys in our blood that were trying to kill us. She said as long as I took my medicine, my body would win.
Sixteen years later: My mother passed away a year ago from AIDS. If she had taken her medicine, she would still be here. The only time I think about HIV is when I do interviews like this.
Message to negative folks: I wish they took the time to know what the disease really is. You say, “I have HIV,” and people are like, “Oh, you’re gonna die!”
What gives her hope: The treatments are getting better and better every day.

But like chemotherapy for cancer, HIV medicines can be hard on your body, with short-term side effects like nausea and diarrhea and an ever-growing list of long-term complications, including heart, liver and kidney trouble. Many people with HIV also are terrified of a little-understood side effect that involves an abnormal redistribution of fat—patients can develop skinny arms, legs and hollow cheeks, but swollen bellies, breasts and necks—recognized by those in the know as a sign of having HIV.
Plus, the pills have to be taken religiously. If you miss doses, the virus can replicate, and mutations can make certain drugs useless. If you’re trying to stick to your dosing schedule, hiding in the bathroom at work or keeping it a secret from your kids certainly doesn’t help. Of course, all this assumes you can pay for your HIV prescriptions (they retail at up to $20,000 a year).
Luckily, the federal Ryan White Care Act, passed in 1990, helps the majority of people with HIV who lack insurance get the meds they need. “Access to medical care is phenomenal now—for women especially,” says Debbie Funderburk, an organizer with the Liberation in Truth Unity Fellowship Church in Newark, New Jersey.
But activists say some African Americans are still left out in the cold. According to Beny J. Primm, MD, board chair of the National Minority AIDS Council, the areas with the most black HIV cases—New York, Florida and Washington, DC—have the fewest federal med dollars per person. Also, says Dr. Primm, “Many HIV positive blacks are not aware of all the goodies available to us”—especially poor people, drug users, dudes on the down low and others who are so afraid of people knowing about their HIV that they don’t seek and receive lifesaving information.

In 1994, while hospitalized with AIDS-related pneumonia, Victoria Williams finally told her three adult children and a few other relatives that she had HIV—with mixed results. Her sons have been supportive, says Williams, a native of Trinidad, but “one sister, when I go to her house, sometimes I’ll hear her say to her children, ‘You know Auntie has AIDS. So when you use the bathroom after her, make sure you spray the toilet.’ ” The same sister—who happens to be a nurse—refused to share a bed with her on a recent family vacation for the same reason.
AIDS has always carried a stigma unique among diseases because so many parents, educators and community leaders in America are uncomfortable talking about sex and because gay men, addicts and sex workers—frequent targets of the virus—are so low on the social totem pole. Funderburk knows of one South Jersey man who travels clear upstate for his doctor appointments because he doesn’t want to run into someone he knows. According to Dr. Primm, “Stigma still stops some people from being [tested or] treated at all.”

Some choose to fight stigma, of course, by being out in the open about their HIV—whether to a neighbor, a coworker or a potential mate. The first person Donald Staples told about his HIV was the lady he hoped would be his first girlfriend out of prison. “All this was new to her—a couple of times she got scared,” he says, but that passed. Now, getting to know HIV—including protecting her from sexual transmission—is an ongoing part of their two-year relationship.
Misinformation and denial aren’t just hurtful to people with HIV—they put negative people at higher risk as well. Condoms and clean needles have dramatically reduced HIV transmission, not just in the U.S. but in Africa and Asia. But even in the best of political climates (George W. Bush’s America is not one), there isn’t much honest talk about how you do get HIV (through a bodily exchange of blood, semen or breastmilk) and don’t get HIV (through kissing, hugging, sharing spoons or toilet seats), especially directed toward youth. There is plenty of blame to go around: Black leaders took too long to claim AIDS as a “black” cause. The Congressional Black Caucus didn’t confront HIV until 1998. And then there were black churches. Longtime positive Alan Sharpe, who saw friends die alone without the blessing of their churches, says, “It would have helped if people could have confided in their pastor, especially if they couldn’t talk to their families and friends."
You Tested HIV Positive—Now What?
Your first 5 steps:

1. Know it’s not a death sentence. You have many years of healthy living ahead of you—and lots to learn about HIV treatment. “I tell clients who test positive that I am living with HIV,” says Rodney McCoy Jr., an HIV-testing counselor at the Whitman-Walker Clinic in Northern Virginia who tested positive in 2002. “This gives my clients hope.”
2. See a doctor.
Even if you don’t start treatment right away, it’s good to have a CD4 count and viral-load test—not to mention getting the support and knowledge of a professional who can be a partner in your health-care decisions. Project Inform and your local ASO can help you find an experienced HIV doc who’s respected in the community. Look for one who’ll take the time to answer your questions clearly—during and between appointments. Check out “Top Black MDs” on Poz.com for a list of black HIV docs. 

3. Tell someone you trust.
“If you’re not sure whether they’ll be supportive,” advises McCoy, “Ask them, ‘How would you feel if I tested positive?’ ” And be prepared to answer questions or refer them to a hotline (see below).

4. Seek help and answers.
Project Inform’s hotline (800-822-7422) can locate an AIDS services organization (ASO) nearby that will get you health care and individual attention. Judy Leahy of Project Inform says, “A lot of people think, ‘I don’t have insurance, so I can’t get any medicine,’ but they can.”

5. Get to a support group. Whether it’s online or at your local ASO, connecting with others breaks down loneliness, offers hope and a sense of community and puts it all into perspective.       
        —Suzy Martin


1. Learn the facts; call (800) 342-AIDS (2437).
2. Pressure Congress to fund more research.
3. Talk to your kids about HIV.
4. Start an AIDS ministry at your church.
5. Invite an HIV positive person to speak at your church, sorority or frat.
 6. Ask your school board to promote safer sex.
7. Participate in an AIDS Walk.
8. Be supportive of HIV positive family members, friends or coworkers.
9. Be visible if you’re positive.
Get tested!