Chris Brownlie was a hero in his time. It was in a time when AIDS was not spoken about by our President and a time when there was no hope. All we could do was to take care of the dying and try to stop the spread of the disease. The poison AZT was just starting to be used and we hoped it would slow down death, even if it only provided a couple more years of life.
Chris and his partner, the extraordinary Phil Wilson, along with John Brown and four others, started the AIDS Hospice Foundation. I joined them on the Board and in the late 1980’s we opened the first hospice in Los Angeles in Chavez Ravine. Chris was one of its first patients and Chris was one of the first to die there. Now the organization is called AIDS Healthcare Foundation and over the past 25 years has become the largest AIDS healthcare agency in the world and still echoes the strident advocacy voice of Chris Brownlie.
AIDS Project Los Angeles (APLA) had started a few years earlier in an old motel in the Silver Lake area of Los Angeles. It offered food, counseling and support, but there was no stopping the dying. When I became CEO in early 1989 we had just moved into a real building and saw our services quickly grow from 700 clients to 7000. In that first year nearly 25% of the staff died. Talent from all walks of life stepped up and created a staff and volunteer corps with expertise one could only dream of. The Buddy System had been imagined and created with 2000 volunteers. APLA exploded against all odds both in its powerful response to the dying men and women it served and in its determination to change the future.
During this time Act Up rose out of death, despair and deep belief that there was nothing to lose. Together we shut down Federal buildings across the nation, held candlelight vigils and demonstrated. And, we grieved.
We fought for the compassionate use of drugs and treatment. Dr. Anthony Fauci, one of the heroes through the years, led the way along with infectious disease doctors. The buyers clubs and ACT UP pushed them to open up this expanded use.
In 1990 we thought we would all die, whether HIV positive or not.
Much has changed since then. Ads in gay publications tell about a life which with the right treatments will be wonderful, and imply being HIV positive does not matter. People are using PreP, which is being proven to prevent HIV infection. Battles are raging in the community about whether people should use it, but it works, so that debate will pass soon. People in treatment with undetectable viral loads simply cannot transmit the disease. Cities like San Francisco, which was one of the epicenters, is now having so few new cases, and it is being studied to understand how social acceptance, compliance, effective treatment and PreP are impacting this amazing change.
Other things have changed as well. The compassionate/extended use of drugs and treatment has now impacted people dealing with diseases of all kinds. It revolutionized the FDA and treatments for cancer.
Institutions that understand the benefits of having real people engaged in designing treatment and research were built. We now have Patient-Centered Outcomes Research Institute (PCORI) which reflects the engagement of patients in the way the HIV/AIDS community built its services.
There had never been such a public health initiative to change people’s behavior. The lessons we learned and what was accomplished has changed the way public health, behavior and prevention programs are run. I remember when the team I worked with at APLA launched our “Mother Cares” campaign with over two thousand billboards in southern California showing “mom” on the back porch in an apron and a frying pan in her hand discussing some of the most personal and sensitive behavior anyone had seen.
It also changed the “gay movement” in America. The HIV/AIDS epidemic killed many of the men engaged in leadership in the community and forced new people to step forward and build the movement and institutions that changed the future. Many women got involved and provided leaderships like Tori Osborn in Los Angeles and Pat Christen in San Francisco. The response built new leadership, which later became the leaders in the LGBTI community.
The epidemic made people understand that homophobia itself caused many of the deaths, with the slow response and blame. People understood how serious this was and began to engage on a new level from being a volunteer “buddy” to raising millions of dollars to fund what government refused to do. We understood the need for not only activism, but strategy, and maybe most of all, we understood that we had power together, we were not afraid and we could do what needed to be done.
People tell me how amazed they were that “gay marriage” happened so fast. And, in many ways it is amazing, but it was not fast and it was no accident. Leaders stepped forward, research was done, strategy was created, hundreds of organizations were involved, and founders like Tim Gill’s Foundation and Jon Styrker’s ARCUS Foundation poured resources into the cause. Lambda Legal and National Council on Lesbian Rights and others fought the battles strategically in the courts. It was a long campaign with a thousand voices. But, I believe the hope, the talent, and the will came out of the war on HIV/AIDS 25 to 30 years ago. We also understand that while “gay marriage” is so important and is an umbrella for other issues it is not the end of a battle, but just a stepping stone. Civil rights are not guaranteed, and for many in the LGBTI community life is no better.
Many of us live in bubbles of safety and general acceptance in major cities in America. We have broken through many “glass ceilings.” But when you look closer this group is mainly white, mainly male and can behave in a way that does not make straight people uncomfortable. Everyone else lives in risk of their homes, their families, their jobs and their safety. These are two very different groups.
On this personal level, those of us who are part of the LGBTI community and especially those of us who lived through the worst years of the epidemic understand the ravages of discrimination. We understand that we are not done in the United States and far from done globally. There is no issue where this discrimination does not have a special impact including economics, security, politics, health and more.
Today, I see the world as one. The victory for human rights and full inclusion is key to societies. For me the first lesson and maybe the hardest was living through the 1980’s and 1990’s. HIV/AIDS was the teacher.
You can understand why World AIDS Day is nearly a sacred day for me. We grieve the friends and family we lost, we celebrate the heroes like Chris Brownlie that fought to the death and the teams of people that gave up careers and fortune to come and fight for the cause. We worry that there is a “willful amnesia” about the past and that we have all forgotten to teach the next generation of the things we have experienced and know. But, we cherish the lessons we learned about the treasure of time, friendships and love.
We learned that there is nothing that cannot be done. As we think to the future, about the lives to be saved, that even beyond AIDS, people together can take care of each other and rise out of the most desperate of circumstances to change the world.