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  

Rain in July

Mom always said if it rains on her Birthday, July 15th, we will have a lot of rain in the following weeks So far it looks like this year her prediction is coming true. This week has been extra wet and thankfully a good deal cooler. However that may change back to hot in the days ahead. This time of year I watch the rain and storm reports carefully to see if I need to rearrange things in the garden. Usually to avoid wind damage to potted plants I have to weight them or even turn them on their sides during windy
thunderstorms.  I rarely get a total rainfall measurement from the news and sometimes I just wonder how much did rain did fall right here in my garden. I had this rain gauge from Casey Trees open house sitting in the studio for about a year and I thought why don't I just stick it in the ground and see what happens. Well the first night it was stormy weather, it was a whopper of a thunder storm with one and seven tenths inches accumulation I discovered the next morning. Wow how exciting to know the number of inches was a lot so I took a picture for proof below.

Naturally with this new gauge in the garden I wanted more data, so I dumped it out and repositioned it for the next 24 hour count. This morning it is still sprinkling by noon the gauge check was an additional six tenths of an inch. Plenty of rain for the garden and the trees in the neighborhood which require 1.5 inches if they are recently planted. Or as the gardener you have to see they get 25 gallons per week to survive and thrive.  

Lately I have been a little off with my daily sketching routine. Not feeling inspired with the heat and just being alone for a few weeks didn't seem to make it any easier nor more difficult I just didn't feel like drawing in addition to all the other stuff that seems to need to be done. Finally on Friday morning, after that big rain and no duty to do watering in the garden, I went out and did a sketch from the flowers right in the garden for a change.
Maybe I needed a break from my routine to get back to a more direct expression of the flowers in the garden. Earlier this year I felt stuck inside with all the cool flower arrangements Keith has been making for his 365 days of Ikebana. That and the extra hot weather made sitting in the garden seem too difficult and uncomfortable.

While I was sitting there drawing I realized that the House Wrens had indeed hatched another clutch of babies over the last couple weeks. It seemed to me that they were fooling around the bird house not sitting on the eggs once they were laid but after listening carefully I heard the baby begging noises coming from the house again for the second time this summer. I tried to get a photograph of what I was watching. The adults coming and going delivering bugs to the babies. Here is a series of images showing some of what I saw.

The adult birds make a lot of warning noise, like a clicking sound. When I am out in the garden they click and scold me especially when I get close to the bird house full of babies. You can see these pictures clearly show the house wren is keeping an eye on me as it comes and goes.
Today it was too drizzly in the garden to sit out there to do my sketch so I decided to cut a flower and bring it into the studio to draw. These hosta flowers smell sweet like a gardenia and they are large and showy so it is a delight to have them by my desk this afternoon as I am writing this blog post.

It's very satisfying to have sketches each day piling up. I don't know what they are for but they at least make the day feel like it means something. I really enjoy having a way to share my sketches as soon as I can get them loaded on the Internet. It feels very good to hear that people see and like my photos and sketches.

This week has been full of tragedy with the cowardly murder of 12 and wounding of 50+ men, women and children in the Aurora, Colorado movie theater. I think of how scared all those attached to such a horrible experience will be for the rest of their lives. It's a sad thing when people have so little love and respect for their neighbors lives. Meanness is all around us but so too is love. I dream of a world where guns and murder are no longer needed and everyone lives in peace. We have to have hope that impossible things can happen or they really will not. Speaking of impossible I used to think that surviving AIDS was impossible but I had hope that I could live longer if I got involved in the search for a cure... twenty five years later I find I was right to get involved. This week begins the International AIDS conference in Washington DC. I plan to attend some of the marches and free educational and cultural events at this years conference.  I went to the conference in 1992 Amsterdam Netherlands. It was right after my partner had died of AIDS and they didn't even know which infection killed him so I was amazed to see so many people coming together to find an effective treatment from all over the world. It helped me get my hope back and keep strong as my own illness progressed. Now I hear that 30,000 from around the world will be coming to this years conference right here in my home town. I hope to be inspired yet again that a cure is coming but only if we keep pushing those who are in power to look for it will it come true. That much I know from experience. Act Up, Fight Back, Fight AIDS is what we used to chant at all the ACTUP marches and demonstrations. That was effective at getting the media to pay attention to the less than 200,000 people infected with the virus. Now it's millions infected and that call has faded but the need to find a cure is as important as it ever was. Will they hear the calls for a cure? Watch TV this coming week to see what they report and monitor the papers to see if they really are telling the stories of real people in need of help or just reporting sensational news to sell advertising...

START AIDS Study video

Yesterday, I watched a new AIDS research video. I am a member of a community advisory board since 1990 at the Washington Veterans Hospital research site and late last year they asked me to give them a little of my background for this new video to try to help get more patients into the study. It was a real honor to be asked in as a veteran of the battle to find an effective AIDS treatment. In 1989-1993 I was a treatment activist as member of ACTUP ( activist group: AIDS Coalition to Unleash Power) and one of the ways I survived my battle with the infection was to be very involved in the back room work to support and advise doctors in their search for treatments that really worked. I survived what seemed a certain death sentence many of my friends succumbed to over the 1980's and early 1990's. Now researchers are working on an international study of when is the best time to start using the many effective treatments that are now available. Is it better to start early or wait until you reach a lower immune system marker and show progression towards real dangerous HIV related infections? The only way to find the answer is to try both options and follow real results to see what is the best outcome over a number of years in a research study setting.
The START study is trying to find healthy HIV positive individuals who have not had any treatment are willing to toss the dice  for the choice of using drugs now or waiting until they get to the lower level T-cells. This video explains many of these details and asks us to share it with anyone who might be interested learning more about this study's objectives.
Here is the link to my minute of fame for a very good cause. The START Study.org
http://www.thestartstudy.org/

1982 NYC about the time we learned of the new disease that has shaped my life ever since.