HIV: A Crisis in New York’s African American and Caribbean Communities
If you've got it, help others fight HIV/AIDS by taking part in research
Everyday, Deniha*, a 32 year-old African-American woman from Bed-Stuy in Brooklyn, is overcome with grief regarding the pain and loss that HIV has brought to the women in her life.
“My mother, my sister, and my sister-in-law all got the virus from men they loved,” explains Deniha.
In New York City, almost 40 percent of the women diagnosed with HIV in 2004 listed heterosexual contact as the primary mode of exposure to HIV. i
“These are not evil men, mind you. They are men who worked hard to provide for their families,” continues Deniha. “And because they saw their friends from back in the day with HIV bein’ turned out, homeless and with nothing, they were afraid to get tested, never did get tested, never knew what hit ‘em until it was way too late. They brought the virus home, and that changed everything.”
In 2004, nearly half of the men diagnosed with HIV in New York City were black. ii
For Deniha, these numbers don’t mean much, but they do confirm that she is not alone.
“I am sick and tired of going to funeral services, of watching my family and friends die,” she says. Indeed, through December 2004, an estimated 201,045 African Americans with AIDS have died. iii
Like the gay community did 20 years ago, Deniha and those close to her are learning how to live with HIV, and they are teaching others how to avoid getting it. And these women want to make sure that researchers are learning how HIV affects all people, including African-Americans, women, and children.
People of color, especially women, are traditionally under-represented in clinical research, and minority participation across the country is low.
For over 20 years, researchers at Beth Israel Medical Center’s Infectious Diseases/AIDS Clinical Trials Unit (IDACTU) in Manhattan have been working to improve the care and quality of life for people living with HIV and AIDS through investigations into new medicines and treatment strategies. However, finding patients from minority communities to participate in these trials has become increasingly difficult. When it comes to participating in research, many minority patients have taken the view that, “You just want to use me as a guinea pig. This isn't going to be of value to me or anyone like me in the future.” This seems to be at least partly rooted in the mistrust that many minorities feel toward doctors and scientists, and unfortunately, this mistrust isn't entirely without justification. Consider the Tuskegee Syphilis Study, in which adequate treatment was withheld for decades from a group of poor black men who had syphilis. Of course, there are now extensive safeguards in place to ensure that there will never be another Tuskegee, but the challenge for researchers is getting this information out to minority communities, and breaking down the all-too-real barriers of suspicion, doubt and wariness.
So, in addition to their regular trials, researchers at Beth Israel Medical Center in New York have been taking a closer look at racial disparities in clinical trials, and why communities of color do not enroll into or access the information made available by participating in these trials. The staff of the IDACTU has been focusing on outreach and interventions to draw a more diverse group of patients into the research program.
“These are essential tools in fighting the changing face of an epidemic, and we are hoping this will continue to work, explains Dr. Donna Mildvan, Director of AIDS Research at Beth Israel Medical Center. “What we've learned is that individuals have a lot of mistrust of the medical community… On the other hand, there's great willingness to learn about clinical trials and good experiences when people do participate in the projects.”
“Our goal is for clinical trials representation to mirror the face of the epidemic today,” says Dr. Mildvan. “It mirrors more closely the face of the epidemic 15 years ago, in terms of percentage participation, and it's largely the gay, white male represented in the trials population rather than the racial and ethnic minorities that are the face of the AIDS epidemic today.”
“If you don't collect the data in an organized way on the people that you want to treat with the drugs, then when the drugs are marketed, you don't have enough information to comfortably prescribe these drugs to your patients who are African-American or Latinos or women,” says Dr. Mildvan. “The only way to know that the drugs approved to treat HIV infection will work in all groups is with all groups being represented in the research and approval process.”
Gwen Costantini, a Nurse Practitioner who has been a research clinician in the Infectious Diseases/AIDS Clinical Trials Unit at Beth Israel for over 12 years says, “involvement in a clinical trial not only has the potential to improve your health today, it is also a great way to play a part in the fight against AIDS and in the future of AIDS treatment and care.” Ms. Costantini tells the HIV positive men and women she meets to “Gather all the information you can, and explore all of your options. Our community depends on you to take care of yourself, and participating in a clinical trial might be one of the best ways to do this.”
If you or someone you know is HIV positive, call the Beth Israel Medical Center Infectious Diseases/AIDS Clinical Trials Unit in New York at 212-420-4519, or toll free at 800-483-7339.
Current study listings are also available on the web, at www.HIVtrials-BethIsraelNY.org.
(*Her name has been changed to protect her family’s confidentiality.)
i., ii. New York City HIV/AIDS Surveillance Statistics 2004. New York: New York City Department of Health and Mental Hygiene, 2005. Updated November 10, 2005.
iii.CDC - "Fact Sheet: HIV/AIDS among African Americans", February 2006
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This article appeared in Caribbean Life, Brooklyn/Staten Island Edition. April 18, 2006. Page 67.
Call: 212.420.4519|800.483.7339 |
