Monday, July 23, 2012

International AIDS conference XIX first day

Panel opening the discussion of AIDS treatment study called SMART
 Sunday after I went to a three hour investigators meeting and luncheon at a hotel in Georgetown I was invited to attend a further discussion at the International AIDS Conference across town on a free day pass.  I wasn't planning on going to the conference except to the Global Village area that is free and open to the public all week long. Melissa Turner sent word she had an extra pass I could use. I was thrilled to be on the inside again after 20 years. I went to the Amsterdam Conference in 1992 and was amazed at the 25,000 people in town for that event back then when there was no effective treatment for AIDS nor HIV. This time it's back in USA for the first time in 22 years after Obama pushed for a law change that was instated by the congressional bigots in 1990 blocking any person from entering USA with HIV unless they had special visas and permits. Then the conference organizers decided to boycott USA locations until the law was lifted. It's great to see the results and actually be able to go inside. A full week's pass costs over $1000. per person. That goes to support all the costs involved in making this thing happen. On the bus ride from Georgetown to Shaw where the convention is located I sat next to a Dr. who has been working at the NIH's Nat. Institute for Mental Health and who is involved in a dementia sub-study in our newest project called START. We had a good talk when I explained this was my first conference since 92 in Amsterdam. Pim Brouwers Ph.D and that I had been in a treatment study at NIH in 1991 we knew some other people in common who worked out there then and remembered the horrors of the early days of death and hopelessness.
Once I got to the convention and located Melissa Turner who had my pass I went with her to the hall for 1,400 people to see our team and it's representatives speak about SMART a large simple trial that was intended to help us know what was the best treatment plan for HIV... That talk included a lot of people and was very quick and not very hard to follow. Everyone on the panel seemed to have their story ready to go and not many questions were asked. That isn't usually the case in these types of events. I guess since we were talking about history and a successful trail it was less controversial than some other stages of research which are more contentious and more is at stake for  the presenters and attendees.
I stuck around for the big opening night event with a lot of celebrities but the room wasn't big enough for everyone so I ended up watching some of it on a TV screen which didn't tell us who was talking and unless you paid close attention we were left in the dust wondering who that was up there... until the Mayor came on screen. I know his face and I heard him make a false claim about no babies being born in WDC with HIV since 2009. DC is the worst city in the country for HIV infections and still they don't have a plan to address the epidemic here so I turned my back and headed out to meet my man Keith at the Union Station on his return from three weeks at his parents mountain home.
It was a thrill to see the talk and to wear the big badge again but I am not the activist I once was, I am lucky to be alive and going to these meetings always reminds me of all the people who have died and didn't get to come along on this long journey. It makes me sad yet it is amazing how far the research has come in so few years. A cure may be around the corner it's hard to tell but with all this progress of the 25 years I have been watching I can't be certain it isn't just months away from coming to light.
I am off tonight to another event for our research group at Ben's Chill Bowl that famous hot dog place on U St. tonight and I am looking forward to some more time with these people I share history with in AIDS research. Tomorrow there is a big march to step off at Noon. Calling for a cure and attention to AIDS treatment and an end to discrimination and criminalization of infected people. Then On Wednesday a show at 5:00 and 7:00 by the group from Thailand that does theater and dance with condom costumes. My friend Cameron Wolf brought his photos of them and their outreach program members to tell us about their work in Bangkok. I can't wait to see them do their traditional temple dances of folk mythology. It's free so if you want to see it too drop in to the lower level of the conference look for the Global Village and the Youth programs section and the huge photos of sepia toned dancers.
INSIGHT Director introduced Dr. Fauci visible standing in the blue lights


Dr. Anthony Fauci director of NIAID NIH opened the discussion of SMART and all it's benefits 

Wafaa El-Sadr from Bronx NY tells the beginning of SMART trial was conceived and named in her living room 10 years ago with major patient community input. It was their idea to test continuous versus interrupted HIV drug treatments to see if we could spare the side effect and problems we thought the drugs were causing over the  life long use we knew was ahead. 

Richard Jefferys came from NYC to give us a community history from the activist point of view on reasons for and reactions to results of the SMART study. 

This was the first slide Jefferys presented about Ken Fornataro's AIDS Treatment Data Network  

Melissa Turner social worker at Washington VA left Dr. Molina from France, Nathan Geffen community rep. South Africa and Judy Currier MD Los Angles.  
 Nathan Geffen told us how SMART helped him turn things around finally 5 years later in South Africa where they still believed due to the president's mistaken information program that HIV wasn't the cause of AIDS. He said SMART was his best argument against Duisenberg's theory showing that less antiretroviral therapy in this study caused more deaths that continuous antiretroviral therapy. Geffen says this has put those crazy notions to rest and allowed the government there to begin putting more people on treatments and spread the news that it is true you need HIV treatments. Only they have not advanced to give it as soon as we do here in USA. He is working to change those guidelines now. 
Melissa Turner social worker from Washington Vets Admin. hospital on screen when she was presenting next to French Dr. Jean-Michel Molina the AIDS researcher from Paris.
 Melissa explained how important the trial's results were for her work with patients to have fact based proof that it is good to take the medicines and there isn't room for "drug holidays" or interruptions in your treatments. She says it has given the nurses and doctors and social workers power to say to her patients definitively that must take all the the pills all the time!
Melissa Turner on big screen

LA ACTG Dr. Judy Currier presenting about pregnancy issues like the need to study when to continue or stop antiviral treatments for moms and how long and often in a new SMART trial. To her right is Fred Gordon former director of CPCRA and head of infectious disease unit at the Washington Veterans Administration Hospital  

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