Being Alive; August 1996
Gary E. Costa

I had a lot of questions about those of us who cannot tolerate these new drugs (not to mention the millions of people in other countries and the US. who cannot afford them). Is this just another rehash of the cruel AZT promise of the late 80s? Is this conference just a giant infomercial for Merck, Glaxo-Wellcome, Roche and other drug companies? Am I going to hear anything new?

The road to Vancouver for me started in February, when I applied for a scholarship from the International Conference Committee. The entrance fee was nearly $1,000, plus airfare and hotel. In late May, I received word that I had indeed been selected to receive a scholarship, limited to the conference enrollment fees and lodging in the dorms at the University of British Columbia. My airfare costs would need to be covered by someone else.

The days leading up to the conference were spent preparing for my trip and looking after my best friend Patrick who was sick. I had several conversations with him about the conference I was to attend. He had started the protease inhibitors in May, and like many people had hoped that this was going to be the answer to his prayers: the long-term treatment that would prolong his life. But this was not to be.

Patrick died in my arms the morning I was to leave for Vancouver. Our last conversation included me promising him that I would continue to fight for drugs that would help people who were in late stages, and to "tell the Crixivan people, thanks for nothing!" (Patrick died with the firm belief that Crixivan hastened his death.)

So it was off to Vancouver that evening, on a search for answers. I was still uncertain how the dorm experience would be. I had never stayed in dorms before, unless you count that night at Fresno State withxoh never mind! The airport was full of conference volunteers who were so friendly and helped us all find our proper shuttles to the college campus. Once there, I was pleased to see how comfortable and clean the facilities were.

On Sunday, the first official day of the conference, I attended a rally and protest in Library Square. The Canadian Prime Minister, Jean Chretien, had recently announced that he refuses to renew Canada's National AIDS Strategy. As it was explained to me, this is to Canadians, what it would be to Americans, if Clinton decided to end all Ryan White funds.

We were invited to attend the protest being held right up the street from the conference site. Not one to miss a good demonstration, I was there! As we marched through the streets chanting something that sounded like "Down with the Croatians!" (which I found quite odd considering Croatia has enough problems right now), I realized we were chanting "Down with Chretien!" Canada is beautiful and Vancouver citizens were hospitable, but they sure do have boring protests! No arrests! No breaking glass! No police brutality! It was more like the Vancouver AIDS Walk or something.

That afternoon the opening ceremonies were held. There were many speeches and promises of hope. I sat there with over 10,000 other people, uncertain of the next few days and what was to come out of the sessions which would start in the morning. I joined the Canadians in turning our backs to their Federal Minister of Health, David Dingwall, in protest of their new policy. I spent the next few days attending every session where protease inhibitors were discussed. Much of the information was overwhelming and technical, but it sounded like very good news. It seems the protease inhibitors are showing excellent results in early studies and continue to do so. I heard over and over again the importance of viral load testing, the clarification of the drug regimen, and of the hope that these drugs bring. The messages I kept hearing were good news, optimism and hope.

I would go back to my dorm room each day and stare at one of the photographs I had brought along with me. It is a photograph of me and six of my friends taken at the 1987 March on Washington. I look at all of our smiling faces in that photograph as I come to terms with the fact that I am the only person in that photo still alive. Would these protease inhibitors have saved them, I wonder?

I attended poster sessions and late breaking sessions and the news on the protease inhibitors continued to be good. Roxane Laboratories and Boeringer Ingelheim also presented very promising results of a trial with nevirapine and AZT. These results along with the news on protease inhibitors left us all leaving Vancouver optimistic. For now.

It is clear that we are making strides in slowing the virus and finding effective treatments for some people. But the jury is still out on the long term success and results of these therapies. We have very limited data and history to go on. It is still too early to draw definitive conclusions. It's way too early to celebrate the cure.

I attended the APLA Commitment to Life a week after my return. I was horrified as I listened to board member Barry Diller actually refer to these findings in Vancouver as "The Cure!" This is clearly irresponsible and dangerous. We have no cure! We have at best a promising cocktail that buys some time for some people with AIDS. There are still those who have unsuccessfully tried the protease inhibitors. There are those who will never have access to them even if they did prove to work for an indefinite period of time. Now more than ever we need to work on finding even better and affordable treatments for all people with HIV and AIDS.

Being Alive's mission is to keep connected with one another and avoid the isolation to which people with AIDS so often fall prey. We will continue to share the latest treatment information through our newsletters, medical updates and treatment libraries. We will work with the nation's top researchers and clinicians to find out the answers to the many questions we still have on these promising new drugs. Being Alive will not celebrate the cure or cease to exist until proven effective treatments are available to all of our infected brothers and sisters. Together we can make a difference!

960810
BA960804

Copyright © 1996 - Beings Alive. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. Subscription lists are kept confidential. Being Alive, 621 N. San Vicente Blvd., West Hollywood, CA 90069, Tel - 310.289.2551; FAX - 310.289.9866; Email: BeiAlive@aol.com  http://www.beingalivela.org/