A Pioneer Activist on World AIDS Day

Debra Fraser-Howze talks about the rowdy, heart-wrenching early days in the fight against the epidemic.

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 TR: With the re-election of President Obama, what do you hope to see in the national fight against HIV and AIDS?

DFH: Now that the U.S. Preventative Services Task Force has made HIV testing a No. 1 priority, I hope that Obama's administration will put more resources into ensuring that physicians actually make HIV testing a part of routine care. This means during your doctor's appointment, your physician will now say, "I'm going to give you these tests, and this HIV test will be included." You can opt out, but they have to offer the tests.

But a system must be developed around how to offer these tests and [at] what part of a patient's intake process you begin to have these discussions. We need to help the physicians because we know that the African-American community is 50 percent of all new HIV infections. There's no confusion anymore, and to make history, this administration should take this on as a priority.

TR: In the early 1980s, you've said that many in the HIV/AIDS activism community thought that the disease was chiefly a concern for white gay men and few others, which did not include women and children. Can you share the story of your battle over the study that discovered HIV's transmission between mother and child?

DFH: It was the late 1980s, and scientists had just concluded the 076 study, which looked at the use of AZT and other medications to break the transmission of HIV from mother to child in utero. I was at Washington D.C.'s Omni Shoreham Hotel to hear their findings along with other activists of color. In my role as the founder and president of the National Black Leadership Commission on AIDS I was asked to sit on this advisory council for the AIDS clinical trial group, which included all of the doctors in the country who were, at that time, working on a cure for AIDS. The meeting was a forum for those 1,000 doctors to meet and speak early on in the epidemic, and we asked for a presentation on the 076 study.

In the audience were activists of color, and there was also a group that was not of color; in fact, they were all men and all white. They had decided, which was not customary for any scientific presentation, to walk in the room and be disruptive with bullhorns and all kinds of shenanigans that would stop us from hearing the facts [which, they worried, would distract from finding a cure or stopping the spread of the disease in the gay male community]. But there were seven of us people of color who desperately wanted to know if there was any progress in breaking this transmission, and a fight broke out. There was shoving of the doctors onstage, they're fighting back, we're fighting back.

The session had to be closed down, and, at one point, the community was called [upon for help] on the black New York radio called WLIB. The hosts were discussing our conflict in Washington, and a group of ministers got together -- some flew down -- and someone called the Nation of Islam, who eventually came into the Omni Shoreham Hotel. I'll never forget it.

[After the original session was closed due to the melee, another was scheduled and] the Fruit of Islam walked in with suits and bow ties and said [to the room of doctors, activists and protesters], "We are here to protect the community's right to hear the science." It was the first time that we were able to hear the facts on this 076 trial, with the protection of the F.O.I., and lo and behold, it is the biggest success in the fight against HIV and AIDS. We have reduced the virus' transmission from mother to child in utero, and now we virtually have no babies born in the United States with HIV and AIDS (pdf) because their mothers are HIV positive.

This directly deflates the idea that "this segment of the community doesn't believe in medication." When the rubber hit the road … the community showed up. Now it's time to come together again to help the Obamas move us in the right direction. If we ask for a seat at the table, we'll be given that, and I am certainly willing to help.

TR: When Magic Johnson introduced the OraQuick at-home test, he said the biggest problem African Americans face with HIV/AIDS is shedding stigma around knowing their status. But how has the stigma changed since the epidemic began?