Monday, January 26, 2009

Martin Delaney - The accomplishments of people living with HIV/AIDS

by Mark Hubbard

Last Monday, the National Institute of Allergies and Infectious Diseases awarded a Director’s Special Recognition Award to Martin for his many contributions to the fight against HIV/AIDS

By now, many of you know that Martin Delaney (of Project Inform) died peacefully Friday morning surrounded by friends and family in San Francisco.

At last year’s Positive Living conference in Fort Walton Beach, Florida, Martin provided the annual treatment update. Martin only missed one meeting in the conference’s eleven-year history, having had a heart attack a week before the event. Positively Living is one of very few U.S. conferences remaining that are targeted specifically (and almost exclusively) to PLWHAs. A member of the audience was so inspired by Martin’s remarks concerning the role of activism in the history of HIV/AIDS that he approached Martin and conference organizer Butch McKay about creating a session on the subject for this year’s event.

As the gentleman and Martin began emailing back and forth, they copied Butch with the product of their efforts. For some reason the correspondence petered out in March of this year. Earlier this week, as a member of the conference planning committee, I volunteered to help format the rough document. This year’s Positive Living will feature a special tribute to Martin. I can’t think of a better way to honor his memory than to pass on this version of what Butch has deemed the “Delaney Declaration.”

The Delaney Declaration
(March 2008)

By Martin Delaney

The entire human population benefited from the way AIDS first struck the gay community. Many people wanted to blame the spread of AIDS on gay people, but the facts are exactly the opposite. The epidemic would have been dramatically worse if it had struck any other group than gay people.

Most diseases uniformly strike an entire population, spreading lightly across all economic, geographic, racial, and gender groups. As a result, nothing really unifies the patient population other than the disease itself. As a consequence, people do not bond together or organize to fight the disease because they have nothing in common that connects them.

You can see this in virtually all other major diseases. There may be millions of people who have a disease but they fail to organize to fight it. They don’t demonstrate, they don’t group together to influence the Congress, they don’t develop media strategies. They just go on with their various local groups and families and fight the disease simply as individuals.

In great contrast, when AIDS hit the gay community with unparalleled specificity, it struck a group that already identified itself as a community across the entire nation. It struck a group of people who were already organized politically with skills to influence both local and national government; it struck a population that that already knew it had to fight for its rights, even fight to survive. It knew how to use the media. It knew it had to take care of its own because no one else would. It knew it had to fight back or die.

We [the gay community] were in San Francisco, Los Angeles, New York and every other major country, yet linked together. Wherever, we were a part of a whole. We were in the scientific community; we were in the NIH (the United States’ medical research agency, the National Institutes of Health). We were in the drug companies and in Congress. Because of this unique situation, AIDS faced a far more formidable and organized enemy than had ever before been the case. Had AIDS simply hit across all the general segments of society, like other diseases, it would have encountered far less resistance. People getting the disease would have had nothing in common with each other, no underlying links or abilities, or any need to see itself as a fighting force. It would have been just another disease and it would have been treated like just another disease.

But we know it was not just another disease. It was far cleverer, more dangerous, and spread quietly because it acted slowly. It continued to spread for decades before society would even know it was there. In contrast when it struck the gay community, our underlying culture made it visible much more quickly. Within a few short years, we were able to see that it was sexually transmitted.

The normal rules for people with life threatening illnesses didn’t work very well. Usually such people are too sick to do anything about it. We saw our entire community under siege; we knew we had to change the rules or we would all be dead.

We hollered about it in the media, we went to the FDA (the United States’ Food and Drug Administration) and the NIH, we marched in Washington, got people on committees and proposed new ideas and new ways of thinking about science and the treatment of people with terrible diseases. WE changed the rules, first for ourselves but ultimately for everyone facing a life threatening disease. WE wouldn’t just listen to our doctor either. We recognized that they worked for us, that we were in charge of our lives and our bodies. We taught each other to demand that our doctors act as partners, not as dictators. We changed the doctor patient relationship. We realized that patient education was ultimately going to be done either by drug companies or by the patient community itself; we organized ourselves to teach ourselves.

We became a voice that could counter, when necessary, the messages of the drug companies, drug company advertising, and everything the companies did that affected us. As activists, we formed teams to speak up for our community regarding clinical trials.

The accomplishments of people living with AIDS:

1.Having an instrumental role in changing the rules for drug discovery, development and approval for life threatening illnesses

2.Greatly speeding up access to new drugs, both in and outside of clinical trials.

3.Changing the mindset of researchers about the wisdom of providing early access to experimental drugs.

4.Patient empowerment - helping people understand that they don’t have to be victims of a disease, but can instead be leaders in the fight against it.

5.Changing the patient mindset from hopelessness to hope; helping people see that there is always something you can do.

6.Demonstrating that you don’t have to be a scientist to influence science and have it serve people.

7.Discovering how to be taken seriously by scientists, academics and government bureaucrats, and how to influence them with without making them the enemy.

8.Learning how to organize to influence government policy.

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