HIV Stigma and Awareness: Time to Change Our Message
By Jeannie Wraight
April 5, 2012
This article was cross-posted from HIVhaven.com.
I am not a victim of HIV or AIDS. I am not someone to fear or pity. I am not beneath anyone, less of a person, or unworthy because I am HIV positive. I am a person living with HIV. I am me! Not the same person I was before I was diagnosed, I am better than I was. I am more than I was. I am more now than I probably ever would have been without HIV because the virus has made me, allowed me, facilitated me, to grow and evolve in ways I never would have been able to without it. I know this. I will not allow ANYONE to pity me, stigmatize me or try to make me feel less than who I am. I do not give anyone that power over me. Because of this I say here, LOUD and CLEAR, for me as a person with HIV, personal stigma is irrelevant!
HIV as a virus, an epidemic, a pandemic, evolves, mutates, changes. So must we as people with HIV and as a community. For so many years we have fought HIV stigma. We have demonstrated and raised our voices, gently educated and shared our stories. We've done good. With 30 years since the emergence of HIV, the science of HIV and HIV treatment has changed the pandemic in monumental ways. Why is our message regarding stigma still the same? Isn't it time to modify our tactics?
We need to change our message.
The biggest concern regarding stigma is that it helps to spread HIV by creating a fear of being HIV positive and thus preventing people from getting tested.
Data generated over the past few years has told us if we are on ARVs and our viral load is undetectable or near undetectable, our infectiousness and ability to transmit HIV is very low.
If we want to change the way society views HIV and people living with HIV, as well as prevent the spread of HIV, what we need is campaigns, articles, interviews, public service announcements and a general consensus promoting HIV testing as vital because an HIV viral load puts people at risk. We need a clear focus on the fact that 20% of people don't know they have HIV, are not on treatment and thus probably have detectable viral loads, AND THIS IS WHERE THE DANGER LIES. Let's base our message on science, not emotion! The focus needs to be on HIV viral loads, something ANYONE can have if they have not recently been tested. Testing is essential. Treatment is essential. We are not what people need to fear -- a substantial viral load due to people not getting tested and treated is. A lack of protecting others against transmission due to not knowing one's status is. Let's take the focus off us and put it where it belongs -- on the virus. Not being tested is dangerous. Not being tested is the pharaoh. Not us who know our status.
Wouldn't this message also put pressure on the powers-that-be to offer ARVs to everyone with HIV including those on the ADAP waiting list?
More research needs to be done measuring the protective benefit of ARVs, particularly in men who have sex with men, as most of this research was performed in heterosexuals. It does appear there is a substantial decrease in rate of infectiousness with ARVs for everyone -- it is just unclear how much of a decrease that equates to with anal sex in MSM. Infectiousness is lower but there may be less of a benefit as found in a small recently released study.
A 101-person study published on the online edition of AIDS found that 18% of the MSM studied had a detectable viral load, half of which had HIV in their semen. Of the men who were undetectable, 25% had HIV in their semen. The articles on this study and abstract did not state how much of a viral load was found in the semen of these men and I can't afford a subscription to AIDS (the online journal) to thoroughly review and share with you the complete data. More research needs to be done on men who have sex with men and maybe even an affordable assay developed that measures viral load in semen, so each individual can gain a better understanding of their personal potential risk of passing on HIV.
In November of 2011 the CDC released a report stating that "only 28% of the 1.2 million people with HIV in the U.S. have a controlled viral load." This study has been referenced by people stating that the up to 96% reduction of infectiousness of people with HIV reported in the HPTN 052 study is misleading because of the low number of people with HIV who have undetectable viral loads.
What many articles about this study and abstract failed to fully explain is that the 72% of people with detectable viral loads in the study described included the one-fifth of people who do not know they are HIV positive. The actual number is about 50% of people with HIV who know they are HIV positive and don't have a controlled virus. Also not mentioned by the media is the fact that an undetectable viral load is not necessary for a reduction in risk to be present, only a low viral load. From the available data it appears the lower the viral load, the lower the risk of HIV transmission.
The CDC also published the following on their website: "The great majority of persons with HIV infection do not transmit HIV to others." CDC estimates at least 95% of those living with HIV infection did not transmit the virus to others in the year they reviewed -- an 89% decline in the estimated rate of HIV transmission since the peak level of new infections in the mid-1980s.
This statement highlights the need for testing and treatment, as well as the personal responsibility that people living with HIV that are aware of our status take to protect others against transmission.
Stigma hurts us as individuals, as people with HIV and an HIV community. But do we give it too much importance in this aspect?
Why do we keep telling out stories in the general media (outside of HIV publications and websites) in a way where we're saying "accept me," "I'm a good person," "I'm just like you"? By saying these things we recognize the view of hate mongers that we should not be accepted, are bad people and are not like everyone else. We can educate people about HIV and try to lessen the fear and worry of people who think they may be infected just as well without such statements or themes and even better by adding this new message.
Aren't we simply playing on someone else's playground? Fighting stigma the way those who stigmatize us determine we do; in the defensive. By promoting an atmosphere of defense to ignorance are we not unintentionally promoting its continued existence rather than contributing to an environment where its general effects are lessened because it is not a recognized or addressed view? Those who are simply uneducated will eventually learn, the rest won't, no matter what we say or do.
In order to progress past HIV stigma and promote awareness, shouldn't we be the first to make that change, removing their power to hurt us personally and as a community by changing the message that people hear about HIV and people with HIV?
On HAART we are less infectious and the large majority of us protect others in every way we can from possible infection. These are recognized facts as the above CDC quote shows (also see my blog entry "Death of a Pariah") and equate to us not being "a danger to society." Continually stating these facts in the media would go much further than simply telling our story so people can determine that some of us are likable people and deal well with being HIV positive.
Let's take the focus off ourselves and put it where it belongs -- on HIV. Let's stop playing the hand dealt us by the ignorant and start playing a winning game. A game that scientific knowledge and years of experience in the field of HIV and has taught us!
It's time to change our message!
"Expecting the world to treat you fairly because you are good is like expecting the bull not to charge because you are a vegetarian."
Hints and Allegations
Jeannie Wraight (known as Jeannie Gibbs before her marriage in April 2011!) has been an AIDS treatment activist for over 14 years. She was a longtime member of ACT UP New York and has participated in countless demonstrations and actions. She has attended over 75 HIV conferences around the world and writes for several HIV publications. Ms. Wraight has sat on many advisory boards as well as the Board of Directors of Health People, an AIDS service organization in the South Bronx, New York. She lives with her partner in the Bronx, where she works on her Web site HIVhaven.com and advocates for novel HIV therapies and nutritional supplements for people with HIV/AIDS. She is also an animal rescuer.
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