Global Survey: Stigma, Isolation and Discrimination Still Pervasive

July 28, 2010

By Tim Horn

HIV-associated stigma, isolation and discrimination remain pervasive problems in the United States and other parts of the world and continue to have profound effects on people’s willingness to disclose their serostatus to key individuals in their lives. This is the finding of a global survey of 2,035 people living with HIV conducted by the International Association for Physicians in AIDS Care (IAPAC) on Thursday, July 22, at the XVIII International AIDS Conference in Vienna.

Suniti Solomon, MD, director of the YR Gaitonde Center for AIDS Research and Education in Chennai, India, presented the survey results on behalf of IAPAC. The survey found that stigma, isolation and discrimination are first among unique obstacles facing people living with HIV around the world. There is no shortage of research indicating that they affect HIV prevention and testing efforts, along with initiatives to link and retain people diagnosed with HIV in care and on treatment.

“An environment of tolerance in which an individual can take an HIV test and live with an HIV diagnosis is of paramount importance to effective HIV prevention and treatment programs at local and national levels,” Solomon said. “Health care providers bear the responsibility of ensuring compassionate and nonjudgmental care of patients.

“Society—or all of us—have a responsibility to break down the barriers of stigma, isolation and discrimination that persist almost 30 years into the global HIV pandemic,” she added.

Indeed, the IAPAC survey results illustrate that HIV-associated stigma, isolation and discrimination remain pervasive issues all over the world. 

The AIDS Treatment for Life International Survey (ATLIS 2010) was conducted in the same manner as a similar survey reported in 2008 at the XVII International AIDS Conference in Mexico City, which found that people living with HIV around the globe still live in fear of the societal stigma that surrounds the disease, and that some are so concerned about side effects of medication that they have chosen to stop their antiretroviral (ARV) drug regimens.

The ATLIS 2010 data reported in Vienna were based on Internet, telephone and face-to-face interviews conducted with 2,035 HIV-positive adult men and women residing in five global regions: 201 people residing in North America, 201 in Latin America, 1,133 in Europe, 200 in Asia and the Pacific and 300 in Africa. A second set of results from the survey, evaluating patient-physician communication, was also reported in Vienna.

The survey was conducted with support from Merck.

According to ATLIS 2010, Solomon reported, the emotional toll of HIV/AIDS is still considerable. More than one third of respondents (37 percent) reported strong feelings of isolation, with the highest prevalence rates in North America and Asia-Pacific. Depression was also prevalent.

Societal and cultural stigmas also continue to affect people living with HIV around the world. According to Solomon, 38 percent of respondents felt as if others were judging them. What’s more, nearly half of respondents had encountered someone who was afraid to have casual contact with them—25 percent reported that someone would not share food or drink with them, and 24 percent reported that someone would not kiss them, simply because they are living with HIV.

Forty-two percent of ATLIS 2010 participants also reported “strong concerns” about others learning their HIV status. Seventy-nine percent, for example, cited social discrimination as a reason for their reluctance to disclose. Other drivers included the impact on establishing future relationships (46 percent), impact on current relationships (42 percent), reputation (42 percent), risk of losing job (36 percent) and risk of losing family or friends (35 percent).

Though 96 percent of respondents reported having disclosed their HIV status to at least one person, Solomon’s team made some sobering discoveries. For example, 17 percent of respondents in long-term relationships had not disclosed their HIV status to their spouse or partner. In addition, 16 percent of Asia-Pacific respondents and 8 percent of Latin-American respondents had never told anyone about their HIV status.

Understandably, many respondents stressed the need for more public education around stigmas. The three most common stigmas in need of combating, Solomon reported, are: a person with HIV has or does engage in risky behavior, people with HIV or AIDS should be avoided, and HIV is easily transmitted through normal everyday activities.

“Despite great strides, 29 years into the HIV pandemic, HIV-associated stigma, isolation and discrimination persist,” Solomon said in her concluding remarks. “Addressing these challenges can benefit individual, community and public health.”

Search: IAPAC, survey, ATLIS 2010, stigma, discrimination, isolation, depression, disclosure, Solomon, Vienna, International AIDS Conference

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Previous Comments:

Frederick Wright, Tampa, 2010-08-09 14:41:53
In the South it is still don't ask and don't tell, for in the early days it was so important to keep ones' mouth closed, due to many kinds of discrimination. The case managers and old school HIV community drills it in one head to keep it a secret. The sad part is the stima wan't go away until HIV poz folks find the courage to come out and build relationship with their community one at a time. Their are a lot of high profile folks too that live in fear to state they are HIV.

Marc, Oakland, Ca., 2010-08-06 14:08:38
Having read all comments, I can relate to all of you. Whats just as worse is getting public based health care, the Doc's and Assistants do not bother to see how long I have been pos.(20yrs.) yet still tell me what to do and not do with others, the tone of voice is disrespectful at best. Sad part they are foreigners being trained by us and they bring there moral, religious and arrogance to the room, I am so tired of being berated by the medical machine, sometimes it makes one think of suicide.

Damali, Brooklyn, NY, 2010-08-05 19:01:53
People need to take the time to get educated and stop being so ignorant to what's going on a person living with HIV IS THE SAME AS A PERSON LIVING WITH CANCER OR HIGH BLOOD PRESSURE THE HAVE TO TAKE MEDICATION TO CONTROL WHAT'S GOING ON WITH THEM THE SAME WAY AN HIV person have to take medication it just so sad that HIV/AIDS have been around for so many years now and people still look at a person that is poz with their nose turned up not realizing that at any giving moment they to can become poz

Christopher, Brooklyn, 2010-08-05 07:12:04
and yes i feel slighted having maintained undetectable viral loads for 10 years

Christopher, Brooklyn, 2010-08-05 07:10:45
The percentages are even higher here for gay men with hiv+ men although that is probaly a survival emotional reaction that i understand and might obviously prevent infections assuming condoms are always used. hiv positives are necessarily separated from the gay male "community" because gay men from a survival point of must and do hate us

Stephan, Somerset West; RSA, 2010-08-04 13:36:10
I am always surprised that pos.people don't band together to avoid isolation. But you can't even find them because nobody discloses. The ad of the above dating site is inundated with scammers and therefore yet more depressing.

joe,s, Newark,nj, 2010-08-04 11:39:51
It has been 25yrs since hiv/aids was discoverd,it is a dame shame that the (facts) are not advertised through mass-media to break this ignorence and fear that exist about hiv/aids.This would help those who are being treated and those who starting treatment.I have been hiv positive for 10yrs!

Ken Howard LCSW, West Hollywood, CA, 2010-08-04 11:27:14
As a licensed psychotherapist and poz man myself, specializing in HIV mental health, these words can't be repeated enough -- that HIV is not just a medical disease; the people living with it need psychosocial support as well, via counseling, support groups, or online communities.

Trish Steen, Kansas City, 2010-08-04 11:20:25
I have a poz friend who was hurt on the job. Her back is in bad shape due to heaving lifting, she can no longer work. She filed for workers comp and was been denied because the State Workers Comp doctor stated that her injury was due to her "serious underlying health condition," meaning HIV. This is a bunch of bull! She has never been on meds and never sick with any HIV illness. She is an elite controller. So sad that State medical providers are discriminating against us as well. For shame!

Keith, Portland, 2010-07-29 15:46:14
If I could go back to the time I was diagnosed, I wouldn't disclose my status to anyone. I have lost most of my friends and family because of being poz. I have joined dating sites but most profiles state that they are HIV- and you be too. My other problem is financial. I can't afford to eat, buy my vitamins and supplements and have any money left over for social activities. I can't get any assistance because I get too much SSD, but not enough to do anything social, making me even more isolated.

Tefard, Helsinki, Finland, 2010-07-29 13:21:42
What makes me sad is I lost my friends just because I have disclosed my hiv status. Some did not reply to my email. I did say only hi, no more no less but they ignored me. Why? Some never remember me but reply to my emails when it comes from me.I thought they could help me,at least encouraging me, if I tell my status. Is hiv transmetted online too? lol. Are we supposed to send greetings for people we consider important? Life is Selfish! This world is becomign full of inhuman population.

James Kile, Cathedral City, 2010-07-29 10:17:08
I have been poz for 21 yrs now, and the thing that gets me is even the gay community shun people with HIV. I don't know why? We should all be in this together. Most Neg men would rather not make friends or do anything with poz men, when they too could become affected by HIV. I just don't get it. We are all in this together, we need to join forces. Neg or Poz. I find it hard to find friends in the gay community, I believe it's because of my Poz status. Lets get back to helping each other.

John, Philadelphia, 2010-07-29 09:14:28
I take SOME comfort in having helped Pennsylvania's Bureau of Workers' Compensation recongnize that religious, AIDS-related workplace discrimination is now considered an abnormal working condition. See YouTube--Christian Job Harrassment.