Legendary Activists in the Fight Against HIV
Throughout the past three decades, there have been many people in the fight against HIV who have made a tremendous difference in what has been possibly the most significant health crisis of our time. In an effort to honor those who have worked to treat, educate and advocate for change, HIV Equal will be honoring researchers, caretakers and activists through a series of stories to give appreciation for all of the hard work that these people do.
Here are thirteen activists who have made a difference.
Credited with saving numerous lives in the battle against HIV/AIDS, Delaney has worked on the side of the angels. The original AIDS activist, Delaney was a trailblazer who challenged the government and the drug industry to fast-track access to experimental HIV therapies. His work resulted in the U.S. Food and Drug Administration (FDA) Accelerated Approval regulations and its Parallel Track policy, which provides wider access to promising new but unapproved HIV drugs. Frustrated by the loss of so many to the epidemic, he fearlessly smuggled the drug ribavirin into the U.S. from Mexico and led “medically supervised guerrilla drug trials” in San Francisco to evaluate the safety and effectiveness of medications before FDA approval. In 1985, he founded Project Inform, which disseminated crucial HIV treatment education to patients and caregivers. He also directed the Fair Pricing Coalition to ensure the affordability and availability of HIV drugs and chaired the Board of the Foundation for AIDS Research. His book, Strategies for Survival, The Gay Men’s Health Manual for the Age of AIDS, educated millions. Posthumously, Anthony S. Fauci, Director of the National Institute of Allergy and Infectious Diseases, awarded Delaney the Director’s Special Recognition Award, calling him a public health hero.
Glaser, the wife of actor Paul Michael Glaser, contracted HIV in 1981 via a blood transfusion during the difficult delivery of her daughter, Ariel, who also became infected. She discovered that no treatment was available for Ariel because no HIV drugs had ever been tested in children. Glaser created the Pediatric AIDS Foundation to focus efforts on preventing and treating pediatric HIV infection. Since Glaser’s death in 1994, the Foundation has become the most important nonprofit organization dedicated to the eradication of pediatric AIDS worldwide by means of research, activism, and prevention and treatment programs.
Playwright, author, and public health activist, Larry Kramer founded the Gay Men’s Health Crisis (GMHC) in New York in 1981 to serve people affected by the emerging virus, HIV. He next established the unabashedly confrontational organization, AIDS Coalition to Unleash Power (ACT-UP), in 1987 to expose the dearth of treatment options and funding for people living with HIV. His most well-known play, The Normal Heart, chronicles the experience of a gay man forced to watch the deterioration of his partner from AIDS. Kramer won a Pulitzer Prize nomination for another play, The Destiny of Me. He also attempted to persuade Yale University to offer a permanent, tenured professorship in gay studies, endowed by Kramer, but succeeded only in having the university agree to a program of visiting professors and related events.
While working for Harvey Milk as a student intern, Jones joined the Gay Liberation movement of the 1970s. After witnessing more than 40 of his friends sicken and die from AIDS, he cofounded the San Francisco AIDS Foundation in 1983 and established The NAMES Project AIDS Memorial Quilt in 1987. His 2000 book, Stitching a Revolution, chronicles his work on the NAMES project and his experience in leading marches during the early days of the epidemic to unify those affected by the disease. Now a leading author and speaker, Jones continues his social action by educating high school and college students in HIV awareness and prevention.
The Indiana teen contracted HIV from infected blood products taken to treat hemophilia. Subsequently, the local school board expelled him, fearing he was a risk to other students, and the family home was riddled with gunshots. White fought AIDS discrimination by educating the public that HIV/AIDS was not just a gay disease and that it could not be spread through casual contact. In late 1990, the U.S. Congress passed the Ryan White Care Act, the foremost piece of HIV health care legislation in the United States, providing for outpatient and home health care, nutrition therapy, hospice services, drug payment assistance, dental services, and health insurance help for low-income people.
Wilson gained his activist chops by serving in various leadership roles in the 1990s. He was the AIDS Coordinator for the City of Los Angeles (1990 to 1993), co-chair of the LA County HIV Health Commission (1990 to 1995), Director of Policy and Planning at AIDS Project Los Angeles (1993 to 1996), and member of the HRSA AIDS Advisory Committee (1995 to 1998). As president, CEO, and founder of the Black AIDS Institute, Wilson directs a coterie of influential authorities on the subject of HIV in African Americans. In January 2010, President Obama tapped Wilson to serve on the President’s Advisory Council on HIV/AIDS (PACHA). Wilson created the website GreaterThan.org dedicated to empowering HIV-positive people to achieve more by working together. He also co-founded the National Black Lesbian and Gay Leadership Forum and the National Task Force on AIDS Prevention. The Ford Foundation identified Wilson as one of 20 awardees for Leadership for a Changing World, in 2001.
A cofounder of TAG, Staley is a defiantly aggressive activist. In 1989, he and three other protesters barricaded themselves inside the headquarters of a pharmaceutical company to protest against the rocketing cost of AZT. He also organized demonstrations to demand speedier access to AIDS drugs. At one point in 1991, Staley actually wrapped the home of Senator Jesse Helms in an enormous condom stamped with the message "A condom to stop unsafe politics. Helms is deadlier than a virus" to highlight the politician’s obstructionist position on HIV/AIDS. President Clinton in 1994 appointed Staley to the National Task Force on AIDS Drug Development. He also served on the board of the Foundation for AIDS Research (amfAR). In 1999, Staley set up the website, AIDSmeds.com, to enable people with HIV to get the information needed to make informed treatment choices. The site has evolved to incorporate a wide range of issues related to gay health and HIV stigma.
Mark S. King
As a writer, activist, community organizer, recovering addict, AIDS educator, and public speaker since the 1980s, King wears many hats. On his blog, MyFabulousDisease, and his website, marksking.com, King relates his experiences as an HIV-positive gay man and recovering crystal methamphetamine addict in the 21st century. In 2014, the blog garnered the Excellence in Blogging award from the National Lesbian & Gay Journalists Association and was nominated for a GLAAD Media Award for outstanding blog. He was the first director of public relations for the Los Angeles Shanti Foundation and served in a number of other HIV-related organizations.
Johnson dominated the basketball courts in the 1980s, but his risky decision in 1991 to reveal his HIV-positive status could have brought it all tumbling down. Instead, the selfless act help raise awareness about the new epidemic. Late that same year, Johnson established the Magic Johnson Foundation to combat HIV/AIDS through programs devoted to HIV/AIDS prevention, HIV testing, and treatment for people living with HIV/AIDS. The organization has since expanded to fight other formidable scourges in urban communities through scholarships and grants. In 1992, Johnson penned an instructive guidebook called What You Can Do to Avoid AIDS. Johnson still serves as Chairman and Founder of the Foundation, which has raised more than $20 million for charitable projects.
Cox cofounded the Treatment Action Group with Staley (TAG) after serving on the treatment and data committee of ACT UP, where he also was a spokesperson. Although he never finished college, the gifted and talented Cox earned the nick name “the citizen scientist” because he ingeniously drew up the protocol for a drug trial to assess protease inhibitor drugs in 1995. The drug companies adopted the TAG-recommended protocol, resulting in a quick approval of the drug regimen from the FDA and the saving of countless lives. Cox then started the Medius Institute for Gay Men’s Health, an initiative designed to support the emotional health of gay men. Ironically, Cox succumbed to AIDS in 2012 after he developed resistance to his HIV drug regimen and apparently stopped taking it.
Innovative mass-marketing fundraiser for LGBT causes, Strub is director of the Sero Project (www.seroproject.com), which represents a national network of people with HIV combating stigma and injustice. He founded POZ magazine and POZ en Español, for people affected by HIV/AIDS and served as president of Cable Positive, the cable television and telecommunications industries’ AIDS educational campaign. Strub has been a strong voice against HIV-related criminalization, initiating the Positive Justice Project with the Center for HIV Law & Policy in 2010. He ran for the House of Representatives in 1990 as the first HIV-positive candidate for federal office in the U.S., gathering 46 percent of the Democratic primary ballot.
Michael founded the Washington, D.C. chapter of ACT-UP and served as the AIDS Cure Party's candidate for President of the United States in 1996. He pushed initiatives for medical marijuana and lobbied in favor of federal funds for needle exchange. Never one to forgo an in-your-face move if it furthered the cause, Michael encouraged supporters to assemble a funeral procession to the White House, carrying his body in a casket after his death in 1998, to demonstrate how the presidency had failed people with HIV/AIDS.
A psychotherapist, author, and HIV activist, Levithan experienced the HIV epidemic firsthand when volunteering to work with gravely ill patients in the mid-1980s. In 1986, he launched a support group for people with HIV called The Healing Circle, which soon served several hundred members, offering an alternative to the conventional support groups that essentially readied people to die. In the 1990s, Levithan acted as a counselor, group facilitator, and board member at Friends in Deed, which provides emotional and spiritual support to people with HIV/AIDS, cancer, and other life-threatening disorders. His book, The New 60, explores life at an age he once feared he would never reach.