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| Nancy Mahon, executive director of the M·A·C AIDS Fund |
Though many have recognized that stigma and misconceptions surrounding HIV/AIDS are prevalent around the world, the results of M·A·C’s new study—gleaned from a survey of 4,510 people in nine countries on five continents—puts cold, hard numbers to that perspective and perhaps more important, opens the door to discussions on how to combat stigma and misperceptions in a new way.
The M·A·C AIDS Fund released their results at a roundtable discussion held at the New York Public Library in midtown Manhattan. The presentation of the statistics was followed by a panel discussion featuring prominent members of the AIDS community. Nancy Mahon, executive director of the M·A·C AIDS Fund, Dr. Thomas Kenyon, principal deputy coordinator and chief medical officer in the Office of the U.S. Global AIDS Coordinator; Jennifer Kates, vice president and director of HIV policy for the Kaiser Family Foundation; Dr. Geeta Rao Gupta, president of the International Center for Research on Women; Dr. Marsha Martin, a former senior deputy director for the Department of Health, HIV/AIDS Administration; and Anthony Rapp, star of the Broadway musical Rent put their heads together to decipher what the statistics meant for people living for HIV and for those who knew little about the disease.
The M·A·C AIDS Fund conducted the survey over a two-week period in September and examined, by phone and through in-person interviews, the perceptions of people in the United States, the U.K., France, Russia, China, India, Brazil, Mexico and South Africa. In addition to the aforementioned results, the study showed that many people mistakenly think that there is already a cure for HIV, and that nearly half of all individuals surveyed said they would be uncomfortable working alongside someone who is HIV positive. Another important global view: 73 percent of respondents felt that women’s difficulty in discussing safe sex with their partners is a factor that contributes to the spread of HIV/AIDS.
The M·A·C AIDS Fund is a philanthropy established by Estée Lauder-owned M·A·C Cosmetics in 1994 to support people infected with and affected by HIV/AIDS around the world. It has raised $100 million to date through the sale of its VIVA GLAM lipstick and lipglass—100 percent of the sale price of those products has gone to fight the disease. The organization’s new study, released in the run-up to World AIDS Day, uncovers deep-seated challenges that show that funding alone is not enough to combat HIV/AIDS. Financial support for AIDS must be complemented with social change and acknowledgement of the myriad factors that cause people to become infected. “The results of this survey coupled with the recent failure of the most promising AIDS vaccine trial underscore that we are not going to vaccinate or cure our way out of this epidemic,” Mahon said in a recent interview. After the roundtable, POZ spoke with Mahon further about the findings.
Nicole Joseph: How did you select the nine countries included in the survey?
Nancy Mahon: We tried to pick countries that were representative of different HIV infection rates, wealth, access to care and knowledge base in terms of HIV. We didn’t get every continent, but we got very close! We [looked at] countries you would think had made headway—and some of them hadn’t.
NJ: What results were true across all of the countries studied?
NM: I think the big headline is that shame and stigma really do pervade, and we need to begin to unpack that in the same way that we [do the results of] scientific research. Also, every single country felt that it was harder for women to talk about sex than it was for men, which seemed to correlate, in many nations, with the high prevalence rate of HIV infections in women. We need to have frank, honest discussions about sex in a way that’s real. We have to dive deeper into what motivates people to do what they do, and how they live their lives.
Also, younger people tended to know more about HIV than older people. The rap is always that the young kids don’t know anything. Well, they know. Whether that’s translating into behavior, I don’t know, but kids know more than we give them credit for. The question now is how to give them the prevention tools [to protect themselves].
NJ: Were there any differences in the data from the different regions?
NM: There were pretty big geographic and national variations. It’s a very varied epidemic. Our participants in China were the least comfortable being around anybody who had HIV. We saw varying levels of comfort—in South Africa, for example, we saw higher levels of comfort because AIDS is a more prevalent, dominant aspect in their lives. What I think is important is that while many of the poorer countries showed much higher rates of stigmatization and shame around HIV, we still have a lot of work to do here in the United States—30 percent of people here said they are not comfortable working with someone with HIV.
NJ: Why do you feel that it is critical to examine and understand peoples’ perceptions and attitudes about HIV/AIDS?
NM: As we know, if there’s something you’re ashamed of or feel stigmatized about, it’s not [likely going to be] something you talk about, but it really does inform what you do. [When that’s the case it can be] pretty hard to talk about and figure out how to address it, let alone [determine] how somebody [else] can help you address it.
[The survey showed] that there’s still a lot of work to do. AIDS is not just a medical issue anymore. More and more, we’re seeing that it’s a societal, psychological and socioeconomic issue. We need to redouble our efforts and resources around basic and effective prevention programs that address gender, age and race differences in a direct and culturally competent way, and around [addressing] shame and stigma.
NJ: What can people living with HIV and AIDS do to fight the stigma surrounding the disease?
NM: I would encourage HIV-positive people—to the extent that they feel comfortable and safe to do so—to really talk about [the virus] with other people. Say, ‘This is part of who I am. I’m not a patient, I’m a person. I’m living with this illness, and I’m doing the best job I can. Some days I feel great, some days I feel lousy’—or however they feel. I think that’s what needs to go on. One result [from the survey] that wasn’t surprising shows that people who knew [someone] living with HIV were much more understanding. The bottom line is that we change minds one at a time.
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