By Dorrit Walsh and Mark Harrington
Since 1992, Treatment Action Group has been advocating for those affected by and struggling with HIV. Since then, we’ve expanded our mission to include tuberculosis (TB) — the leading cause of death by infectious disease worldwide — and hepatitis C (HCV).
It’s impossible to cover a full 30 years of history in a short retrospective, but for this issue of TAGline, we think it’s important to cover some major milestones. This is in no way meant to be a complete history of TAG.
Fight for Survival
In 1992, AIDS activists were suffering from growing pains, burnout, and a continuing failed government response to the disease. ACT UP/NY, which was the largest group at the time, was rife with infighting, and at the same time many of its leaders and members were dead or getting sick. In January of 1992, some members of the ACT UP Treatment and Data Committee (many already infected) formed a new nonprofit organization focused on accelerating treatment research. Initially, TAG’s first action targeted drug companies whose prices were considered too high and therefore prohibitive. The group’s first media story, “AIDS Hit Squad Seeks More Than Attention,” written by Catherine Woodard, was published in Newsday.
In mid-1992, to focus policymakers’ attention on making AIDS research more strategic and better-funded, in July TAG cofounders Mark Harrington and Gregg Gonsalves presented “AIDS Research at the NIH: A Critical Review” at the 8th International Conference on AIDS in Amsterdam. TAG’s recommendations to reform the NIH AIDS research program were signed into law by President Clinton in June 1993.
TAG’s activities in its first decade continued to center on getting government and drug companies to finally listen to our concerns. TAG played a major role in compelling the pharmaceutical companies developing protease inhibitors to study these drugs faster and provide information on how to use them. TAG sped up research into opportunistic infections and cancers that at the time were leading killers of people with HIV. Triple combinations of highly active antiretroviral therapy (HAART) were introduced in 1996, and brought down the AIDS death rate by two-thirds in rich countries, creating a revolution.
TAG worked relentlessly to achieve broader access to HIV treatment in developed and developing countries. We worked with South Africa’s Treatment Action Campaign (TAC) to conduct a series of three-day treatment literacy workshops in November 2000, spearheading work that led to their government finally providing life-saving HIV treatment to over 5 million South Africans.
TAG’s second decade (2002 – 2012) centered on broadening and deepening the methods of treatment activism TAG had pioneered in its first ten years. We added TB and HCV to our agenda and worked on getting better prevention, treatments, and vaccines for those two epidemics. We broadened our partnerships to more closely include the communities most affected by these diseases. We worked closely with organizations that worked in Africa, Asia, Latin America, and the former Soviet Union. Our work with HCV made it essential to get involved with groups concerned with prisoners, sex workers, and drug users.
TAG concentrated on getting better drugs and more access to HIV drugs — not only in the United States, but around the world. The pinnacle of our efforts in the second decade was the 19th International AIDS Conference in Washington, DC, in 2012. This was the first time the conference had been held in the U.S. since 1990. (This was due to the U.S. government’s decision in 1987 to mandate HIV screening for all visitors over the age of 14. This ban stayed in effect until Congress lifted it in 2009, which paved the way for the conference to once again return to the United States.) It was also during this conference that Mark Harrington along with leaders from other U.S.- based activist groups participating in a global march on the White House were arrested. By chance, Mark was put in the same van as his friend and ally Charles King, executive director of Housing Works. In was in that van that they came up with a plan to use New York State and New York City as a test case to create a program that could help end AIDS as an epidemic in New York.
In the past decade (2012–2022), TAG has continued to fight for equitable access to treatment for HIV, HCV, and TB, and for accelerating research for better treatment and prevention. With Housing Works, we launched a statewide coalition of activists, people with HIV, and providers and persuaded New York State and City to endorse an ambitious effort to end AIDS in New York by providing effective treatment and prevention to all. Despite many obstacles — including COVID-19 — we are on track to making AIDS history in New York, and other jurisdictions are now beginning their own such efforts.
Back when we began working on TB, it took a long time to cure and many of the drugs came with their own horrible side effects. But in the past ten years, treatment of this disease has been shortened and radically simplified. HCV has a similar story. Treatment for this disease went from ineffective and very toxic to 99% curative two-drug, two- month regimens. We also worked successfully to make HCV treatment more affordable in the U.S. and around the world. Theoretically, we could eliminate HCV, if only countries would implement affordable access to treatment.
Into the Future
Thirty years is a long time, and so much has changed since twenty angry treatment activists left ACT UP in 1992 and set out on their own mission. We’ve had successes and we’ve had failures. 40 million people have died from HIV since the pandemic began; in the past two centuries, a billion people have died from tuberculosis and millions from HCV. We’re closer to ending these epidemics, but not close enough. With your support, we can continue the progress that began 30 years ago.