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When will HIV stigma ever end ?

Oct 6, 2013

Hi Ben,

Hope u are well and healthy !

After 30 years since the first cases of HIV/AIDS, this disease still remains with a negative stigma and people in general still shun from HIV sufferers. Despite all the medical advances and the fact that HIV is now a chronic treatable disease, people like us are still discriminated at the work place, by insurance companies, in hospitals and in all other areas.

This discrimination seems will continue even till death. In some funerals where the deceased dies with AIDS, funeral parlors either reluctant to do the enbalming of bodies or take too much precaution on the bodies that sometimes make us felt that we are insulted or looked down upon even until death.

I wonder when will this ever end ??? With all the recent medical breakthroughs, why havent the doctors and the AIDS foundation and organisations did something to correct this misperceptions and negative stereotypes ?? There are thousands of other viruses/bacterias that can cause equally the same kind of harm that HIV gives and yet those who suffer from these are not discriminated or blackmarked. One example Hepatitis is even more infectious and can be fatal to sufferers, and yet no discrimination is attached to it and insurance companies would still cover them fully.

HIV sufferers are also considered as criminal if they have sex with others without informing their partner of their status. What about HIV carriers with undetectable viral loads who are well maintaining their health regularly with HAART treatment ? Should they be discriminated too. What about those carriers of other viruses/diseases who had sex with others knowingly that they have these viruses. Should they be considered as criminal as well?

I just find these whole thing about HIV/AIDS truly unacceptable. We are living post 30 years and yet nothing much has changed about the existing attitude to people who carry HIV/AIDS.

What do u think about this and are there efforts being made to alleviate this perpetual suffering by HIV sufferers all around the globe ??? We must change this.

Response from Dr. Young

Hello and thanks for your thought-provoking post.

I agree, stigma, discrimination and criminalization must change.

Stigma is a critical barrier to care and culminates in discrimination and criminalization against many communities of people (and individuals) living with HIV around the world. Things are better than they were in the darkest days of the 1980s and 90s, but there's still much need for improvement.

The primary issue, it seems to me, is that doctors, healthcare providers and advocacy communities were very successful in pushing a drug discovery agenda, but stigma and discrimination won't find their solutions in biomedical science, but rather social science and culture change. These things are different and arguably, more challenging.

Many of the groups that are at greatest risk of getting HIV are also criminalized in their very communities- making access to prevention, care and treatment problematic, if not seemingly illegal.

Let's be clear, groups were discriminated against long before HIV was around, I think that it's unrealistic to think that HIV was going to help the situation. There are many heroic groups working very hard on the topic, both here in the US and abroad, and progress is happening. Ironically though, as the deadly urgency of AIDS declines in the eyes of the community and media, the urgency to deal with issues of HIV-related stigma and discrimination also fades.

But there is a light shining on stigma. The hottest topic among HIV care programs is the care cascade- focusing attention, not on finding new drugs, but rather the myriad conditions that make it difficult for people at risk for HIV to receive quality preventive care, HIV testing and to link to care and treatment. Stigma, discrimination and criminalization are central barriers that need to be addressed in this cascade. Best practices and critical thinking about HIV prevention, harm reduction and HIV treatments need to be embraced, endorsed and implemented- even in the face of these barriers. This approach brings together ethicists, economists, social scientists and the biomedical communities to analyze, discuss, decide and act on these critical issues.

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