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We Changed the World!

June 1, 2011

Where Were You

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 me, 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.


I Want to Change the World

We Changed the World!

It's not an exaggeration to say that we change the world. Among other things, we changed the way:

  1. Healthcare is provided;
  2. New drugs are approved;
  3. Care and housing is financed;
  4. International aid so it can provide drug therapy; and
  5. Ultimately, the way to advocate for change.

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

Back to the beginning ... Where were you on June 5th 1981? I was living my life as an out and proud gay Asian man in Seattle Washington. I didn't read the Centers for Disease Control's (CDC) Morbidity and Mortality Weekly Report about the first cases of PCP (Pneumocystis carinii pneumonia) that were diagnosed in five gay men in Los Angeles. These cases were the beginning of what was first called GRID (gay related immune deficiency), which would later be renamed AIDS (acquired immune deficiency syndrome). In 1981, I had no idea how much my life was about to change.


The Stonewall Inn

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.


Kaposi's sarcoma

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.


Nobody Wants to Take Care of Our Sick and Dying Friends

Our movement had to grow up and do it quickly. What were the darkest days of the epidemic were also some of the most heroic times. Nobody would take care of our friends, so we learned how to do it ourselves.


Fighting for Our Lives

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.


We Are Not Victims

We condemn attempts to label us as "victims," a term that implies defeat, and we are only occasionally "patients," a term that implies passivity, helplessness and dependence upon the care of others. We are "People with AIDS."

Recommendations for All People

  1. Support us and join in our struggle against those who would refuse to touch us, or who would fire us from our jobs, evict us from our homes or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.
  2. Do not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

Recommendations for People With AIDS

  1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
  2. Be involved at every level of decision-making. Specifically, serve on the board of directors of provider organizations.
  3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
  4. Substitute low-risk sexual behaviors in place of those that could endanger themselves or their partners; we feel that people with AIDS have an ethical responsibility to inform their potential partners of their health status.

Rights of People With AIDS

  1. To live as full and satisfying sexual and emotional lives as anyone else.
  2. To receive quality medical treatment and quality social service provisions without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race.
  3. To obtain full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.
  4. To ensure privacy and confidentiality of medical records, to receive human respect and the right to choose who their significant others are.
  5. To die -- and to LIVE -- in dignity.

On this anniversary, I pay tribute to authors of the Denver Principles and all the AIDS Service Organizations (ASOs) that were established to serve PWAs. ASOs were created because nobody would take care of our friends -- not the government, not our families, not established medical systems. Back in the early 1980s, we were on our own.

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.

I'm All About Safe Sex

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. Doctors are an important part of the continuum model, but now the system is patient-focused and looks beyond doctors and hospitals. It takes into account your entire life, not just your sick life. This means housing, food, employment, mental health, transportation and other related services are important to a PWA's health and well being.

The movement's first ASO was Gay Men's Health Crisis founded in New York in 1982. Their first executive director (ED) was Roger McFarland. The first minority ASO was Minority AIDS Project founded in 1985 in Los Angeles by Archbishop Carl Bean. Marie St. Cyr started the first women's organization in 1986 called WARN (Women and AIDS Resource Network) in Brooklyn, New York. Soon, thousands of organizations would spring up across the country to provide care and prevention services to the diverse communities impacted by HIV/AIDS. All of these organizations have unique histories, but they were founded because the system did not take care of their friends.

In addition to local ASOs, national organizations were formed in Washington DC. The National Association of People With AIDS was the first to organize in 1982, but they did not hire their ED, Stephen Beck, until 1987. AIDS Action Council was the first organization to open an office in DC. Their first ED was Gary McDonald. I will always be grateful to Gary, because when I moved to DC in 1985 to start the National AIDS Network, Gary shared his offices with me.

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, but as of yet, unapproved drugs. This step was made possible by a group of new measures known as the "treatment" investigational new drug (IND) regulations. These regulations provide a way for drug developers to make promising experimental drugs available to patients with AIDS and other serious illnesses even before all clinical testing is complete.

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The Ryan White Care Act was first authorized on August 18, 1990 thanks to the leadership provided by Tim Westmoreland and Congressman Henry Waxman, and 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-Gonzales 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 the leadership provided by 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 the 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 images, and their willingness to get arrested, ACT UP became a driving force for change in our movement. In fact, they changed the way other diseases would advocate for their constituents.

On March 24, 1987, 250 ACT UP members demonstrated at Wall Street and Broadway to demand greater access to experimental AIDS drugs and for a coordinated national policy to fight the disease. Later that year, they would shut down the FDA. In December of 1989, 4,500 protestors arrived at St. Patrick's Cathedral during Mass in a demonstration directed toward the Roman Catholic Archdiocese's public stand against AIDS education and condom distribution, as well as its opposition to abortion.

Our movement started because nobody would help our friends who were sick and dying. Thirty years later, our work is not done. We must play important roles in the upcoming initiatives:

  1. Affordable Care Act (ACA)
  2. National HIV/AIDS Strategy (NHAS)
  3. 12 Cities Project
  4. Enhanced Comprehensive HIV Prevention Plans (ECHPP)
  5. Update of Funding Formula for Housing Opportunities For Persons With AIDS (HOPWA)
  6. Ryan White Reauthorization (RWCA)
  7. HHS Action Plan for the Prevention and Treatment of Viral Hepatitis
  8. HHS Action Plan to Reduce Racial and Ethnic Health Disparities

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 okay. You can't live through an epidemic and be okay. 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!

Paul Kawata is the executive director for the National Minority AIDS Council.



  
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This article was provided by National Minority AIDS Council. Visit NMAC's website to find out more about their activities, publications and services.
 
See Also
20 Years of Magic: How One Man's HIV Disclosure Inspired Others
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