November 24, 2009

November 24, 2009
How Stigma Kills

Welcome to another day in my life. Today is Tuesday and I hope you are having a safe and great week so far.

Today I would like to talk about stigma and HIV.

People do not want us to: cut their hair, serve them food, babysit their children, marry them or be their friend. Why AIDS stigma is as deadly as the virus itself.

Defined as a mark of shame, disgrace or discredit, stigma has long plagued HIV and AIDS. It is one of the defining characteristics of the disease, differentiating it from its biologically parallel but socially altogether different retroviral kin: hepatitis, herpes and human papillomavirus (HPV). While we can chirpily discuss vaccinating our children against HPV as we choke down our Cheerios, and we can sit comfortably in front of commercials for herpes drugs, the mere whisper of the word “AIDS” often causes all polite conversation to cease.

We are not imagining this. In 2007, amfAR, the Foundation for AIDS Research, commissioned Harris Interactive to conduct a study among the general American public seeking their attitudes about women living with HIV/AIDS. The survey showed that the majority of Americans are uncomfortable around people living with the virus. More specifically, the study revealed that 59 percent of Americans are somewhat or not at all comfortable with having an HIV positive woman providing them with child care; 47 percent of Americans are somewhat or not at all comfortable with having an HIV positive woman serve them food at a restaurant, and 35 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman as their hairdresser. This study, which mined attitudes about HIV positive women, flushes out that it is indeed the virus itself that makes people squirm. In other words, people do not fear HIV because (as some suggest) they misperceive it to be a gay or a black disease; they fear HIV and the people living with it, period.

The study also revealed that the vast majority of Americans are not comfortable with the idea of having a romantic relationship with an HIV positive partner. Eighty seven percent of Americans are somewhat or not at all comfortable dating someone who is HIV positive, and 89 percent of Americans are somewhat or not at all comfortable marrying someone who is HIV positive. One in five Americans said they would not be comfortable with having an HIV positive woman as a close friend. Ouch.

The results of a recent survey about stigma showed that our readers’ perceptions of the general public’s attitude toward people living with HIV are spot on. Eighty eight percent of you said that your fear of being stigmatized has made dating/relationships more difficult (remember, 87 percent of the general public said they are uncomfortable dating you), and 91 percent of you believe AIDS stigma prevents people from getting romantically serious with/getting married to you (89 percent of the general public agreed with you). That is very close statistical mirroring.

Given that HIV related stigma is as bad as we perceive it to be, it is no wonder then that 65 percent of you said that HIV related stigma has prevented you from disclosing to family members; 71 percent of you said it keeps you from telling coworkers; and 60 percent of you said you do not tell friends because of fear of being stigmatized.

One statistic we found particularly disturbing in the Harris study was that very few Americans believe that HIV positive women should have children. In response to the question, Should a woman with any of the following conditions have children? was fifty nine percent said women with cancer should have a child; 47 percent of people said women with depression should; 37 percent said women with multiple sclerosis should; 20 percent said women with hepatitis C should; 19 percent said women with Down syndrome should; and 17 percent said women with schizophrenia should. Yet, only 14 percent of Americans said they thought women with HIV should have a child.

This points to a root cause of AIDS stigma: lack of education. Too many people still do not have the correct facts about the disease. For example, women with HIV under proper medical care can usually have a child without passing the virus on and are likely to live long enough to parent the child. Since lack of information breeds fear and fear breeds stigma, one clear prescription for fighting stigma is renewed awareness and better education around the disease.

It would be one thing if stigma stopped with an attitude. If all it meant to be stigmatized was that some people did not like us, it would perhaps be manageable, albeit uncomfortable. But when stigma gets in the way of our survival, that is another thing entirely. Thirty four percent of you said that fear of stigma has prevented you from seeking care, treatment and support. And 19 percent of you said you do not disclose to health care professionals because of HIV related stigma, a fact that certainly compromises the level of care you are receiving. Imagine how many people do not get tested for HIV because of stigma. It is estimated that one in five Americans living with the disease is unaware of his or her status. And according to the CDC, it is estimated that HIV positive people who are unaware of their infection may account for 54 to 70 percent of all new sexually transmitted HIV infections in the United States. Seems clear to us that stigma is a barrier to individual and public health. Not to mention that 48 percent of you said fear of stigma has adversely affected your career. It is harder to keep a good job and afford medical insurance and prescription drugs if you are not performing at optimal levels at work.

But while much of the impact of HIV related stigma is quantifiable, it is, arguably, those aspects of stigma not captured by statistics that prove the most devastating. As we went to press, more than 1,000 of you told us chilling stories of how stigma negatively affects your lives breaking down your spirit and your will to live.

Only a small group of you spoke of how you fight stigma, standing proud and strong despite society’s desire to keep you down. Some of you have found the inner strength and resolve to rise up in spite of people’s fear and ignorance.

As a community of people living with HIV and as a society in general, we need to do a better job fighting stigma by reopening the dialogue about this disease and dragging the unseen facts and faces into the light. Because it is much easier to fear what we do not know. Interestingly, while 85 percent of you said that President Obama and his administration are not doing enough to combat stigma around HIV/AIDS, 78 percent of you said that the HIV/AIDS community itself is not doing enough to combat stigma.

It is a chicken and egg conundrum. Stigma around AIDS will only dissipate when the world is safe enough for people with HIV to no longer fear disclosing. Individually, many of us living with HIV who have disclosed in POZ or in our lives have seen that people can be supportive and kind once they understand the facts around the disease. (Sixty seven percent of you said that people treated you the same, post disclosure.) But 87 percent of you said that the current anti-discrimination laws do not sufficiently protect HIV positive people from being stigmatized, which means that things must change before we can afford to show our faces and change the way the world sees people living with HIV for the better.

Forty nine percent of you said that HIV positive people’s fear of being stigmatized is worse than the actual stigma. At Dab the AIDS Bear Project, we see repeatedly that this is true. For those who feel they are ready, and can safely come forward, speaking about having HIV can do much to erode the corrosive stigma that keeps us from good health. It bashes stigma when we show the world we have nothing to hide and are nothing to fear.

Until we meet again; here's wishing you health, hope and happiness.

big bear hug,

Daddy Dab