(The Root) — This year marks the 25th celebration of World AIDS Day, and according to activists like National Black Leadership Commission on AIDS founder and current OraSure Senior Vice President of Government Affairs Debra Fraser-Howze, it's been a tumultuous but rewarding journey.
In the early 1980s, Fraser-Howze was working with the Urban League to reduce teen pregnancy when a young man who was HIV positive came into her clinic. He had a pregnant girlfriend and another child by a different woman. At the time, U.S. safety rhetoric told people that condom use would reduce the spread of sexually transmitted diseases, but Fraser-Howze knew that the large number of teen moms meant few people were following that advice. And when a co-worker asked her whether the young man could've spread HIV to both of his partners as well as his children, she knew an epidemic was on the horizon.
Gathering the major players of New York's health, religious and political sector, Fraser-Howze soon began the National Black Leadership Commission on AIDS and has worked tirelessly to fight the HIV/AIDS epidemic in the African-American community ever since. This battle included a few harried moments where activists of color faced off against white gay male activists who thought HIV was chiefly their community's concern. According to Fraser-Howze, at one particular confab the Fruit of Islam even had to act as security guards for her and her colleagues.
Now, as a senior vice president of government affairs at OraSure, which recently released the first at-home HIV test, called OraQuick, Fraser-Howze hopes that the product, which can be purchased at pharmacies such as CVS and Walgreens, can help the more than 200,000 Americans who are HIV positive but don't know it.
On this World AIDS Day, The Root spoke with Fraser-Howze about her early days of HIV and AIDS activism, what progress has been made since then and the biggest challenge African Americans face today in conquering this pandemic.
The Root: What was the first World AIDS Day like 25 years ago?
Debra Fraser-Howze: It was a blessing. For the first time, there was an international acknowledgement that brought the African and African-American communities together on an issue we knew was affecting both of us across two continents deeply. Twenty-five years ago, a lot of people still thought that HIV and AIDS was only a white, gay male problem — it used to be called G.R.I.D., the gay-related immune deficiency disease.
Around that time, we'd heard from then-Surgeon General C. Everett Koop that this disease was coming into our community like an out-of-control locomotive. But African Americans were still having a hard time understanding how we were burying black gay men in unimaginable numbers. Black women were also dying from all sorts of different cancers, and when activists in New York City looked back [at the medical records of women who'd died], we realized those diseases were HIV-related.
In the 1990s the HIV and AIDS health enclave identified cervical cancer as one of the opportunistic infections that the Centers for Disease Control would use to classify somebody moving from HIV infection to full-blown AIDS. It wasn't a standard practice then to ask women about or to test them for the HIV epidemic. But if we'd noticed that the HIV/AIDS epidemic was a heterosexual problem everywhere else except the United States and how closely related the African-American and African community's actions, behaviors and norms were, it [wouldn't have been] hard to realize that there could be some transference through behavior and many of our women could be infected.
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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?
DFH: Twenty-five years ago, I would visit black gay men in the hospital, and some of their mothers wouldn't even come to see them. Since then, the education around this disease has gotten so much better. From 1981 to 1983, I held babies at Harlem Hospital that would be there today and gone tomorrow. They were called the border babies, left by mothers who would deliver, discover that they had full-blown AIDS and would leave the baby at the hospital because they felt that that was the best place for them.
We were so unaware and uneducated about this disease. These babies were piling up, and the hospital staff was begging people to come hold them because newborns also die from lack of being held. It was an excruciating part of the epidemic. Both black and white AIDS victims would linger in the hospices, and we'd have to suit up with masks and, in some cases, entire body suits to visit them. All of these things happened at the beginning of the epidemic so stigma was the least of our issues …
Will we rid ourselves of the HIV/AIDS stigma because it's a disease that is associated with sex? Americans don't do well discussing sex openly, especially African Americans, because we're relatively conservative around sexuality. But we have to move past all of that. For Christmas, I will be giving my single daughter one of our OraQuick AIDS tests, wrapped with a bow and a note that says, "I love you this much and I want you to love yourself." When we all get to that point, we'll be OK.
Hillary Crosley is the New York bureau chief at The Root.