Nomad JuanCa's Report

Sunday night's opening ceremony of the International AIDS Society conference commenced with a performance of native dance by local Aboriginal people. Even in the context of a modern, high-tech conference center, the primeval rhythms of the dance and music transported us to a time long before there were Europeans and Westerners here--long before AIDS had found its way into the world. As Tim has covered the content of the opening ceremony so well on our conference coverage page on POZ.com and AIDSmeds.com, I'll refrain from repeating it here...but I do want to say a few words about Maura Elaripe Mea, an HIV-positive woman who was the first person to come forward and reveal her status in her native land of Papua New Guinea. She gave a fantastic keynote speech.

It was interesting to watch another woman tell her story. Though we are from lands tens of thousands of miles away - and have different jobs (she is a nurse) - we have experienced many of the same issues and feelings around being HIV positive and disclosing our status. She founded, along with 19 other positive people, a group called Igat Hope -- Papua New Guinea's version of The National Association of People with AIDS.

She spoke eloquently and passionately about the need for people living with HIV/AIDS to come forward so that others may learn not to fear those living with the virus. My favorite suggestion she offered was that others "talk to us, not about us." It was so reassuring to know that others living with the disease around the world agree with me about the power of HIV positive people's unique ability to change the way the world perceives this disease. And she made an excellent point that when people fear those living with HIV/AIDS, it makes it hard for us to be able to take good care of ourselves.

She used the example of how HIV positive people should be supported so that we can work to bring ourselves out of the poverty that HIV so often brings into our lives as we struggle to pay for medicines and treatment. I heard similar sentiments expressed in Vietnam - some of the people working at NGOs and ASOs there emphasized the need to help positive people keep jobs and perhaps find a job they could do closer to home (like raising water buffalo) so that they could keep productive and have income even if they could not work at a more physically taxing job, or were ousted from a job by others who were not comfortable working beside people who were HIV positive. I think it's so important for people to know how much their understanding and support can help people living with the disease be self-sufficient. Maura is a brave and wonderful woman...I'd say more about her here, but I was lucky enough to interview her so I'd rather send you to our page of conference coverage to hear her speak in her own words.

A couple of things struck me from all of the wise words shared at the opening ceremonies. One is how Australia has done a remarkable job combatting HIV from the very beginning. Since 1996, the country has succeeded in reducing its rate of infection by 17%. The phrase "testing to treat, not quarantine" was used to describe the philosophy behind their testing outreach and they are very progressive with harm reduction techniques such as dispensing clean needles. There are depository boxes for used needles in the restrooms...Australia's widespread openess about the issue has clealry helped control the spread of HIV among IDUs in particular. Another thing that I found interesting was how the overall health of the general populace (and lack of widespread HIV infection) is a necessary prerequisite for the growth of a developing nation - as opposed to widespread health (and a low HIV infection rate) being a side effect of that development. Having just come from Vietnam which seems to grow right before your eyes, we witnessed first hand the need for a healthy society...without it, who will build the roads, bridges, schools and hospitals? The third thing that I found fascinating was that the virological response to treatment was as good in developing nations (like South Africa) as it is in developed countries (like Switzerland). All over the world, given the chance, the right education and access to care, people can and will take their pills as recommended and get better. (A side note to this...in Vietnam, we heard that medications were sometimes distributed without prescriptions and people were confused about how to take their meds. This, combined with a shortage of health care workers, and testing sites that can give people the lab results they need to show them that their treatment is working thus providing positive incentive for good compliance which helps avoid drug resistance, can lead to less-than-ideal treatment results. But, when those things are addressed, it seems that people all over the world can have the same positive effect from properly administered treatment.) And, finally, Dr. Fauci referenced the words of Peter Piot, head of UNAIDS, who said that for every person put into treatment in 2005, there were six new infections, thus emphasizing that the pandemic can not be fought by treatment alone. Prevention and global access to treatment comprise the necessary one-two punch (combo therapy, if you will) to beat this sucker to the ground.

Having seen the effect of stories like mine and Maura's in terms of influencing behavior (when people hear our stories they are more likely to disclose, talk to their doctor about treatment options and get tested if they don't know their status), I strongly believe that people living with HIV can be one of the best prevention tools we have. Getting our stories out into the world so that others see and believe that HIV can happen to them is a powerful way to make people wake up. That's the thinking behind OurDignity.com (check it out and share your story!). Whether you're HIV positive, or just know someone who is, you can help support all the wonderful science we're hearing about here at IAS by making people aware, from a personal, real-life point of view, how HIV can happen to anyone. I am inspired by all the good scientific news I am hearing here in Sydney, by the innovative work of the many brilliant doctors and scientists seeking a solution to AIDS and especially by the likes of leaders like Maura. It feels good to know that we are not alone -- and the the world is a small one after all.

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Regan's post was so good that i had to share it. Check more about Regan's Experience at Regan's Blog.