'We changed the world' - a 30 year retrospective
 

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posted Friday, June 10, 2011 - Volume 39 Issue 23

'We changed the world' - a 30 year retrospective
by Paul Kawata - Executive Director, National Minority AIDS Council

As we approach the 30th anniversary of the first diagnosed case of AIDS, the HIV community can look back with pride at all that was accomplished. We changed the world!

However, this milestone is a sad day for me. Sad because so many friends are not here. Like many of you, I didn't do this work for myself; I did it because my friends were sick and dying. I still hear their voices; I still feel the pain of all that loss. My writings are the public rants of a troubled man who is trying to heal himself after losing so many friends that he can't remember all their names.

It's not an exaggeration to say that we changed the world. Among other things, we changed the way healthcare is provided, how new drugs are approved, how care and housing is financed, international aid's ability to provide drug therapy, and the way to advocate for change.

So much was accomplished in the last 30 years, but it came at an unspeakable price.

The Golden Years (1969-1981)
Some Gay men call the years been 1969 and 1981 the Golden Years. It was after Stonewall, but before AIDS. I wasn't at Stonewall, but I owe my life to the queens who stood up and fought back on that day in June of 1969.

Because they stood up, I could live my life as an out Gay man. I was part of that first generation of Gay men and Lesbians who lived our lives entirely out of the closet. What is now common was revolutionary back in the day.

For personal safety and empowerment, Gay ghettos were formed in major cities throughout the United States. These were communities of acceptance - an acceptance not given by our families or the government - where people were free to live openly, without apology. Sex between two men or two women was seen as an act of revolution. To some, it was a golden time.

Who could have anticipated AIDS? How quickly everything changed.

The Plague: The Early Years
It's hard to imagine and almost impossible to describe the early years. In those Gay ghettos, everything changed. Friends started losing weight, then came the coughing, then the night sweats, and finally the hospital. Healthy one day, and three months later, dead.

You could literally be a leper in your own city. Some folks got purple lesions called Kaposi's sarcoma all over their body. My friend Bobby used to call them his polka dots.

The Lesbian community made an invaluable contribution to the fight. Their support, understanding, and love got our movement through many a difficult night, as well as the nurses, who would stay all night, long after their shift was over.

Those long nights in hospitals waiting & the waiting could be unbearable. Wanting the suffering to end, but not ready to say goodbye. It's not okay to be young and to read the obituaries every day. Yet that was my life, like so many of us in the fight.

The Denver Principles (1983)
The Denver Principles was a manifesto written by people with AIDS in 1983. They serve as the foundation for so many of our accomplishments. They are as relevant today as they were 28 years ago.

On this anniversary, I pay tribute to authors of the Denver Principles and all the AIDS Service Organizations (ASOs) that were established to serve people with AIDS.

BUILDING A HEALTHY COMMUNITY
It started with buddy programs, an early precursor to case management. These programs connected sick people with volunteers who would help navigate medical systems and benefit programs. They would also provide home care to sick friends who were dying.

Then came safe sex. Before AIDS, there was really no concept of safe or unsafe sex. The AIDS community created this term and changed the behaviors of hundreds of thousands of Gay men across the country and the world. As HIV infected other communities, we learned to adapt safe sex programs for women, people of color, Transgender persons, drug users, sex workers, and young people.

Our movement changed healthcare. Before AIDS, sick people received care from their doctor via the medical model. In this system, the doctor was the decision maker. People with AIDS (PWAs) did not want all the power to reside with their doctors; they wanted a voice in these difficult decisions. As a result, HIV care moved from the medical model to the continuum of care model that is still used today.

The AIDS community changed the way new drugs were approved by the Food and Drug Administration (FDA). Thanks to ACT UP, Project Inform, TAG, and other treatment groups, in May of 1987 the FDA agreed to give desperately ill patients expanded and speedier access to promising drugs. This step was made possible by a group of new regulations that allowed drug developers to make experimental drugs available to patients with AIDS and other serious illnesses even before all clinical testing was completed.

The Ryan White Care Act was first authorized on August 18, 1990, thanks to the leadership provided by Tim Westmoreland, Congressman Henry Waxman, Michael Iskowitz, and Senator Ted Kennedy. Housing Opportunities for Persons with AIDS (HOPWA) was created in the AIDS Housing Opportunities Act, a part of the Cranston-Gonzalez National Affordable Housing Act of 1990. Housing is now seen as a critical component to HIV treatment and prevention. Our communities were instrumental in the development and passage of these historic pieces of legislation.

In March 1998, African-American leaders developed a Call to Action requesting the president and surgeon general declare HIV/AIDS a state of emergency in the African-American community. They also testified before the Congressional Black Caucus (CBC), urging action.

Thanks to their leadership and that of the CBC, the Minority AIDS Initiative (MAI) was created to improve HIV/AIDS-related health outcomes for racial and ethnic minority communities disproportionately affected by HIV/AIDS. The MAI provides money for communities to increase the availability of medications, primary care, support services, and outreach services to communities of color. It also supports the development of new and innovative programs designed to reduce HIV-related health disparities.

The U.S. President's Emergency Plan for AIDS Relief (PEPFAR) is a U.S. government initiative to help save the lives of those suffering from HIV/AIDS around the world. This historic commitment is the largest by any nation to combat a single disease internationally, and PEPFAR investments also help alleviate suffering from other diseases across the global health spectrum. PEPFAR is driven by a shared responsibility among donor and partner nations and others to make smart investments to save lives.

ACT UP transformed the process of patient advocacy. With their anger turned into direct action, their iconic imagery, and their willingness to get arrested, ACT UP became a driving force for change in our movement. In fact, they changed how patient advocacy was done for other diseases.

WE ARE NOT VICTIMS
Our movement started because nobody would help our friends who were sick and dying. Thirty years later, our work is still not done.

I remain committed to NMAC, but I also need time - time to heal, time to think, time to transform my sadness to acceptance. It will never be OK. You can't live through an epidemic and be OK. But maybe, just maybe, I will learn to accept and appreciate the goodness and accomplishments of these last 30 years and not just the pain and suffering.

Thank you for all that you do to fight HIV/AIDS. We changed the world!



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