AIDS TREATMENT NEWS #136, October 11, 1991

Marty Blecman, President of Megatone Records and an AIDS activist, died at his home in San Francisco on September 20, 1991. Marty's introduction to the AIDS activist movement came to him through Terry Sutton, a person with AIDS and CMV retinitis who fought until his own death in April 1989 for access to the anti-CMV drug foscarnet. After Terry's death, Marty continued to answer the endless phone calls that came in for Terry from people with CMV and to advocate for their access to foscarnet. Ironically, Marty suffered with CMV colitis himself for the last 14 months of his life; while finally able to obtain foscarnet, the side effects were very unpleasant and it was clear that his CMV disease did not respond to the treatment.

Marty was a close personal friend of AIDS TREATMENT NEWS writer Michelle Roland. After Terry's death, Marty and Michelle were interviewed about the inspiration that Terry had been to both of them in their struggle against AIDS; AIDS TREATMENT NEWS published the interview in issue #77. Marty became the inspiration for Michelle's articles "Managing Your Doctor" (issue 111) and "Gastrointestinal Manifestations of HIV," (issue 133), as well as for her continuing activist and medical work. Marty was a writer himself; here are some of his thoughts:

Summer 1989:

"101 T-Cells and Counting: Over 100,000 AIDS diagnoses, over 65,000 Americans dead, and still no war on AIDS has been declared by President Bush or our government...In view of the truth, one of the most logical things going on is the growing AIDS activist movement. These people have hit the streets, hit the papers, hit the negotiations, and won major battles for thousands who sit in judgment or apathy or are too sick to fight...When history looks back at the World War II holocaust there were Jews, Gypsies, and Homosexuals who dared to ACT-UP and were constantly criticized by the majority for fear of 'making things worse.' Perhaps the majority never heard 'Silence = Death, Action = Life'...

"This infection of the immune system is not a 'chronically managed illness.' If it were, people wouldn't be dropping like flies...Spiritually, I can face death, but not by neglect or apathy or homophobia. I will go out fighting for my rights as a citizen of the planet and then die at least an honorable death...

"The controversy and energy spent criticizing AIDS activists never ceases to amaze me. One would think the controversy and intellectual discussion would swell around why more people aren't angry enough to get out and fight for our lives...

"I'll probably die of AIDS but not without a fight, to at least honor all of my friends who have gone on before me and to perhaps save a few who are yet to follow. It would be nice if I saved my own ass in the process...

"The epidemic seems out of control to me and I always thought by now much more would be done to stop the dying. I go out in the world and things seem business as usual with an occasional AIDS report on television. When things become familiar, do they lose their impact on us? Did I really shut down? Got me. I just hope my obituary doesn't say I crossed peacefully into some wonderful familiar light."

For information about a Celebration of Life Party for Marty on October 26, call Michelle at 916/753-0292.

** In Memoriam: Elenore Pred

Elenore Pred, founder of Breast Cancer Action and a leader of the movement to build coalitions between AIDS and cancer activists, died October 3 in San Francisco from complications of cancer chemotherapy.

Breast cancer kills 44,000 women each year in the U. S. One in nine women will get the disease, and of these, one in three will die. The incidence of breast cancer is rapidly increasing, and no one knows why.

"After 50 years of no progress toward preventing or curing the epidemic that is currently killing record numbers of women, we who have the disease, along with families, friends, and concerned citizens, are angry. This is not only a personal tragedy -- it is a political and economic tragedy played our upon community, national and world stages.

"We are responding to an inadequate channeling of funds for breast cancer research. Billions of dollars are spent on treatment -- surgery, radiation, and drugs which puts profits into the hands of a medical-pharmaceutical establishment who have not brought the mortality statistics down in 50 years. A major focus of our organization is to influence the availability and prioritization of funds for medical research toward the prevention and cure of breast cancer." [letter from board of directors, Breast Cancer Action]

"We've got to stay in their faces," Pred told The Washington Post (June 11, 1991, "Quest for Breast Cancer Cure"). That's why ACT UP was so successful. They had somebody constantly making the politicians know that there were people behind the statistics." U. S. News and World Report selected Elenore Pred as one of eight "National Heros of 1991" and published a two-page article on her life and work (August 26/September 2, 1991).

Breast Cancer Action can be reached at P. O. Box 460185, San Francisco, CA 94146, 415/922-8279.

** In Memoriam: Belinda Mason

Reporter, playwright, and AIDS activist Belinda Mason died on September 9, 1991. Ms. Mason was appointed to the National Commission on AIDS in July of 1989; she also served as president of the National Association of People With AIDS, and a founder of the Kentucky PWA Coalition. Two of us from AIDS TREATMENT NEWS met Belinda in January, 1990 at the Rocky Mountain Regional AIDS Conference in Denver. Following are excerpts of the remarks she delivered to the Conference.

"There are lots of very exciting developments in AIDS, and things are moving very quickly. I'm sure for some of you, as for me, there's a sense of gratification, the feeling that we've broken through some kind of wall, we have a momentum now

...there's lots of money now that we don't have to worry about killing Russians with. Maybe some of that money will come to AIDS

...Many, many people with AIDS still do not have access to any kind of medical care, any kind of decent medical care or quality medical care. I can tell you truthfully that the reason I have become so prominent in this work

...is that I'm a person of privilege by birth. I was born a white woman in the upper South, and my family had the kind of connections to get the drugs for me, the information for me that I needed to get. Most people with AIDS are not like me. They are not so lucky. We all have to remember that when we start to advocate for causes

...We need access to experimental therapies, there needs to be easier ways -- you shouldn't have to be a Belinda Mason to be able to get a treatment. There should be a more broad and a more equitable distribution of the resources as they exist. And we have to make sure that as we're working as advocates for people with AIDS that we continue to help them use the channels that exist, and even circumvent the channels or invent new channels to experimental therapies

...People have lived and are living very well with AIDS. It's not a pipe dream. And it's at least as reasonable, I think, to teach people to believe in the possibility of life as it is to teach them to be ready for their own death."

On August 1, 1991, Belinda Mason wrote to President George Bush, who had appointed her to the National Commission on AIDS, asking for his leadership in supporting a more constructive national approach to the epidemic:

"After more than ten years of the AIDS crisis, it is disheartening to realize that some people are still pointing fingers and looking for a place to lay blame. Only our effort as a united people has any hope of slowing the epidemic and avoiding the further human tragedy that statistics tell us we will all surely face one day.

"Mr. President, those who come after me are counting on you."

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