Confronting HIV/AIDS Stigma: A Q &A With Frank Beadle de Palomo
Frank Beadle de Palomo, senior vice president and director of the AED Center on AIDS & Community Health, is an expert on HIV/AIDS prevention, treatment, and the social stigma associated with the virus.
Why is there so much more HIV/AIDS stigma than there is with other illnesses?
Sex, sexuality, drugs, illness, and death create a fertile base for stigma. You have to go back to the beginning of the epidemic and look at who was infected--it started out in this country as a largely white gay male disease. I think it was very hard for Americans to think of AIDS not as being part of the gay male community, but that it just happened to greatly impact them first.
So early on in the epidemic, sexuality (versus sexual activity) was confused as a contributing factor for the epidemic, then drug use, and race and ethnicity were seen as the next components of the epidemic. Even though white gay men still account for the majority of AIDS cases, they no longer account for the majority of HIV infections. Now African Americans and people of color, particularly woman, account for the majority of HIV infections.
AIDS is largely transmitted through sexual activities (i.e., unprotected sex) and blood-borne transmission (i.e., via use of shared, non-sterile needles), which are two activities we don’t like to talk about. People say the United States is about sex, drugs, and rock and roll, but we don’t talk about sex and drugs. We really only talk about rock and roll.
How prevalent is it?
HIV/AIDS-related stigma and discrimination occurs everywhere—in families, among friends, in workplaces, religious communities…everywhere. I remember early on in the epidemic watching well trained colleagues take little mental time-outs when providing care to persons living with HIV/AIDS (PLWHA) — “Okay, I’m assessing my risk…am I placing myself at risk?” — they were doing a conscious review of everything they had just done because they were afraid.
HIV/AIDS stigma is very widespread. It is insidious and it’s very hard to measure because it manifests in so many different ways.
One reason is that stigma is born of human behavior. AIDS has such a complex mix of sexual behavior, and potentially drug use, and also the psycho-social dynamics of men and woman, gender, age, and poverty. Because some people think of HIV-infected individuals as having done something (behavior) to get infected, you have the recipe for stigma. A reality check: no one deserves to become HIV-infected…we should focus on fighting the virus and supporting PLWHA.
How is HIV/AIDS stigma manifested?
It is changing, but not fast enough. People have lost their jobs, been kicked out of their homes, and generally ostracized by loved ones, colleagues, and society. Stigma often takes the form of discrimination—acts that separate people living with the virus from those who are HIV-negative.
In many parts of the world, you find very high awareness about AIDS, HIV transmission, and risk factors. However, we find that in these settings, people still stigmatize. For example, we have research in which individuals, who knew that knew that HIV/AIDS was not transmitted through sharing eating utensils, yet in role plays with individuals who they thought were HIV-positive, would still segregate utensils. There is a fear factor around AIDS that is very rational, but it has to be addressed.
In the United States we re seeing that individuals are still weary of disclosing their HIV status for fear of being ostracized by their families or loved ones. This creates a situation in which individuals may not get tested and do not access life-saving treatments which fuels morbidity, mortality, and further HIV transmission.
What have you found to be the most effective way(s) of combating stigma?
We work to help governments, administrations, and leaders understand that some of their policies create stigma. For example, in Central America AED fought very hard to address mandatory testing policies that would have affected individuals applying for jobs or insurance. HIV testing should be encouraged and even routinely offered via workplaces; however, not to qualify for employment. Workplace HIV programs are critical tools in combating HIV/AIDS, especially programs that include safeguards to protect individuals’ confidentiality and livelihoods.
Another approach has been to create very visible imagery and commentary of people living with HIV/AIDS—showing them as who they are: everyday people doing everything things with families, without families, at work, in social situation. This helps to normalize the fact that PLWHA are just like everyone else. Moreover, it also helps demonstrate that if we can increase access for treatments, PLWHA can live healthy and productive lives.
I think that is a strong message: you diminish the stigma of HIV/AIDS and raise the real understanding of what it is by making PLWHA more visible. This has to be done through social marketing and communications programs, behavior change, changing policy, and all kinds of visibility activities.
This includes trying to create more advocates at the community level so that stigma is not something you can get away with—that you get confronted if you engage in stigmatizing behavior.
These approaches, combined with continuing to educate young people, who may not have lived through the days when AIDS-related deaths were all too common, and who may not know anyone who is HIV-positive or who has died of AIDS. Education and prevention continue to be critical tools in combating stigma.
We have to remember: there is not cure for HIV/AIDS, but eliminating stigma will go a long way to creating an environment in which individuals at-risk or who are HIV-positive but do not know their status are highly motivated to get tested and know their serostatus. If they find out that they are HIV-positive, a stigma-free environment will also have fewer barriers and disincentives to accessing treatment, which will improve life outcomes and lead to reduced HIV transmission.
Do you think we can eliminate stigma?
Yes, I do think we can eliminate stigma. Once, in this country and world, polio carried much of the same kinds of stigma as HIV/AIDS does know. Even before we had an effective vaccine, we had improved knowledge and awareness, understanding of risk factors, compassion and support for those infected, increased access to treatment…we have to get to the same place with AIDS.
