The Death of the Pariah
By Jeannie Wraight
October 12, 2011
Almost everyone with HIV has felt from time to time, or been made to feel, like a "pariah." We've all heard the word. Most of us know the feeling. As if other people need to be protected from us. We've heard people say "HIV is the new leprosy" or in our defense "HIV's not leprosy you know." How about the ad with the scorpion in bed as if we were poison?
Who hasn't been faced with stigma or rejection, or the fear of it when telling a new potential partner about our status? Or been in a relationship with a negative person and the worry of infecting them was overwhelming? How many times have we been treated like we were infectious and a danger by nurses or hospital staff or mothers who think they need to shield their children from us or people who disclosed our status to someone else in order to "protect them?"
A new study, HTPN 052, saw a 96% decrease in HIV transmission for couples, where the positive partner initiated antiretroviral therapy early at between 350 and 550 CD4 cells. Another study, reported in the May 2010 Lancet (Heterosexual HIV-1 transmission after initiation of antiretroviral therapy: a prospective cohort analysis), reported a 92% reduction in HIV transmission for those on ARTs who began therapy at greater than 250 CD4s.
To many, this does not come as a surprise but confirms a statement made by Swiss officials on January 30, 2008. Issued by four Swiss HIV experts and published in The Bulletin of Swiss Medicine, the Statement read "an HIV-infected person on antiretroviral therapy with completely suppressed viremia ("effective ART") (and does not have any other STDs) is not sexually infectious, i.e. cannot transmit HIV through sexual contact."
Whoa, hold on. So what exactly does this mean. As a person with HIV, next to a cure this is the best news we could get. The chances of us passing on the virus, if we are on ARVs with a low or suppressed viral load, is hugely decreased?!
Well let's not get too excited and throw away the condoms. WE ARE STILL ABLE TO PASS ON THE VIRUS. Any chance is still a chance. In addition, more studies need to be done. The way I see it, the fear that HIV-positive people will stop disclosing their status to potential partners and/or stop using condoms or that HIV negative people will stop using condoms in acceptance of the lowered risk is the main reasons this new knowledge has not become common knowledge. We have to be responsible, inform potential partners of our status and make informed, educated, intelligent decisions when it comes to protection.
So many have worked so hard, for so long, to raise public awareness about responsible sex. I truly hope that this information does not reverse that hard work and lead to people not disclosing their status. And for HIV-negative people -- ASK about your potential partner's status and viral load if they're positive; it's YOUR responsibility first and foremost to protect yourself.
With that said, what do we do with this information? Do we stop using condoms, for those who are? It's a tough one. Having a low viral load is not a guarantee of not transmitting HIV to someone. But wait, neither is condoms. They break, they come off.
Well as far as I see it, this info benefits us in several ways. First, this greatly increases the chance and drive for all HIV-positive people getting ARVs. At least in theory, it should. If we can prevent new infections at the same time as treat someone who is already HIV positive, doesn't that make sense, financially as well as ethically? Shouldn't getting everyone on ARVs who wants treatment be even more of a priority now? Why is treatment as prevention not being discussed as a prevention method as much as the use of PrEP? Hmmm ... lower the risk of transmission while providing drugs to someone who needs them along with more testing for HIV; or give people who don't otherwise need ARVs drugs that could do potential harm while over 10 million HIV-positive people still need ARVs? How is this a serious debate? (Though I would add that I think there are many cases where PrEP is appropriate)
Second, it makes us who are HIV positive feel a hell of a lot better. Isn't it nice to know that it's more difficult to infect someone? To have that peace of mind that a condom breaking or making a mutual decision to not use condoms probably won't turn into the hell of infecting someone? As long as we are responsible and make informed, well thought out decisions, this is great news for us as HIV-positive individuals. The Pariah is no more.
And third, for those of us who want to have children and who cannot or chose not to use sperm washing (for HIV-positive men and HIV-negative women) this opens up the possibility of parenthood. For some couples the risk is worth the potential benefits. Another option in this case would be to use Pre Exposure Prophylaxis (PrEP) as well, preferably in a clinical setting, where the negative partner takes a short course of ARVs as well during attempts at conception.
Also, for those who are in long-term, monogamous relationships and have mutually decided not to use protection, this information is also invaluable and comforting. I mean, let's face it -- we don't all use protection. Some couples have decided that the intimacy of unprotected sex is worth the risk of infection.
Let me point out the obvious. If you do decide not to use protection, please remember that protection is for BOTH people. HIV positive and negative. Be aware of the risk of being re-infected with another strain of HIV or contracting an STD like Herpes, Chlamydia, gonorrhea etc. Ai lot of people with HIV look at using a condom only to protect their partner; protecting ourselves should be a major consideration in deciding whether or not to use protection.
At this moment, no one can tell us whether or not we should continue to use protection. The data (and the Swiss) say it is relatively safe not to. Large clinical trials have concluded that is you are on ARTs with a suppressed or low viral load and started therapy above 250 CD4 cells the chance of passing on the virus in reduced by about 95%. But no one wants to say, go ahead, throw away the condoms just in case someone does get infected. It is going to have to be your call. Do some research and discuss with your partners/potential partners. Whatever you choose to do, make sure it is an educated, well thought out decision.
One question I'd love to have answered is what about those of us who naturally have low or undetectable viral loads? Personally I've never been on ARVs (except AZT monotherapy for a few months when I was first infected.) My viral load is usually around 1000. Right now I'm undetectable for the first time using nothing more than selenium (Selenomax -- I'm not pushing any particular brand but this is the one used in a University of Miami study where CD4 count increases were experienced, and higher levels of selenium predicted (but was not reported in study results) decreased HIV-1 viral load (P < .02), both of which are effects I'm experiencing). Let me say here that I'm not advocating for supplements instead of ARVs! I have no idea what inflammation from HIV is doing to me, just that I have a low viral load. Not being on ARVs is just a personal decision. But for people like me, does it matter that you are on ARVs or just that you have a low viral load? All of the people in these studies were on ARVs.
One thing for sure is that all of this is a conversation that so desperately needs to take place. I've barely heard anyone talk about it. Have you? I'm really interested to know.
So please, don't let anyone, including yourself, make you feel diseased or contagious or like a threat ever again. HIV science and medicine have come a long way. The stigma we have faced was always wrong and now even more so. Let's bury the pariah.
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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