Monday, September 17, 2012

Are We Still Acting Up Over HIV?

“ACT UP could easily become your life,” said John Riley at a weekly ACT UP/NY meeting held earlier this Summer on June 18th, 2012.  He was talking about ACT UP when it first started in 1987, when Americans were angry and scared, watching an incurable disease take the lives of their friends and family.  “Meetings used to be held in Cooper Union, and up to 400 people would go,” said Riley, who is one of the early members of ACT UP, and a co-founder of Health GAP (Health Global Access Project an organization that works to provide generic AIDS drugs to developing countries.

Now, ACT UP meetings are quite different.  ACT UP, the AIDS Coalition To Unleash Power, is a diverse, non-partisan group of individuals united in anger and committed to direct action to end the AIDS crisis ( This year, ACT UP celebrates its 25 birthday.  When I went to the June 18th meeting, there were about 20 people who eventually trickled in, mostly older, original members.  There were maybe five other people there around my age, all from other organizations like Queerocracy or VOCAL-NY (Voices Of Community Activists & Leaders).  It seemed to me that ACT UP had fractured and branched out into a dozen new organizations focused on different aspects of the AIDS fight — housing, health reform, community development, and global distribution of HIV/AIDS drugs.

Part of what made ACT UP so powerful in the beginning years was its mass of determined youth.  Demonstrations wracked with symbolism and anger attracted publicity, and publicity attracted the government’s attention.  Suffering young people were uniting to demand solutions to the AIDS crisis—they wanted cheaper healthcare for those with the disease, and since very little was known about AIDS, ACT UP demanded government money for research.  “I was HIV positive in 1981, back when they were calling the disease GRID — Gay-Related Immune Deficiency,” said Eric Sawyer, one of the founders of the ACT UP, and a co-founder of Housing Works and Health GAP. 

We now know that HIV does not only affect Gay men, but in 1987 it did not matter what the disease was called because thousands of people were dying from a disease that might be curable, if the government would only listen. “Every other week there were obituaries read out during the general meetings—obituaries of members who had just died from AIDS,” Riley remembers.

Where has ACT UP gone? That is a question Larry Kramer asks in his article in the Huffington Post ( ) called “Happy Birthday, ACT UP, wherever you are.” Kramer is a founding member of both ACT UP and GMHC (Gay Men’s Health Crisis), but in his recent article, he wonders what and where ACT UP is today, and talks about the organization as if it only exists in the past. According to Kramer, ACT UP was started by “a bunch of terrified kids,” but it’s thanks to those scared young activists that those diagnosed with HIV over 25 years ago are still alive and well today. 

Today, the fight against AIDS suffers from apathy because we have medications that can extend the life of a person with HIV to its natural length.  We know how HIV is transmitted, and how to prevent the spread of HIV.  Indeed the United State has not only made pharmaceutical advances, but also political advances. This July, Washington DC hosted the International AIDS Conference after twenty-two years of not allowing people with HIV to enter the country.  Today that law is no longer in existence, but there are still policies in this country that feed discrimination or prevent those infected with HIV from receiving the highest level of medical care.

At the Convention in Washington DC, protesters gathered to object to the current United States ban on the entry of sex workers and drug users into the country.  As these two populations are among the highest risk groups for contracting AIDS, many protesters felt that to ignore these populations is discrimination, and it is a human rights violation to prevent them from receiving necessary medical attention.  Those who showed up to the protest were not explicitly representing ACT UP, but it did not go unmentioned that this tradition of protest is mainly thanks to the original organizations that set precedents for how to object and how to draw media attention to an important issue. According to an article in The Nation ( ), protesters chanted “No sex workers? No drug users? No IAC!” near the place where the conference was taking place.

As the father of the branch organizations that demonstrated at the International AIDS Conference, ACT UP—and specifically ACT UP/NY—was also getting ready for its time in the spotlight.  When I attended the general meeting in early July, ACT UP/NY was planning to join forces with Occupy Wall Street to campaign for the Robin Hood Tax.  This tax is something a coalition of forces around the world, including ACT UP/NY, conceived to solve many issues with one tax on government and big business practices such as currency and stock exchanges.  The idea of the Robin Hood Tax, or the Financial Transaction Tax, was brought to OWS where young and angry people began to rally support for the tax that will raise money for poverty reduction, green energy implementation in developing countries, and AIDS and healthcare coverage in the United States.  OWS started in much the same way as ACT UP/NY; both were formed by young people who were frustrated with the government, and both started on Wall Street (the site of ACT UP’s first New York protest).  This must be the sort of thing that Larry Kramer is looking for.  ACT UP is still fighting and protesting with OWS and other AIDS activism organizations.

At the ACT UP/NY meeting, plans to protest HIV criminalization during the Gay Pride march were discussed. “We now have the history of 25 years of activism, and we know now what to expect,” said Sawyer after the meeting, when I learned a few of ACT UP’s current goals: decriminalization of HIV and financial propositions like the Robin Hood Tax. Individual members of ACT UP had their own goals for the future of AIDS reform, and many have devoted their careers to AIDS activism. Sawyer, who now works at UNAIDS said “It’s not fair that I can buy thirty years of life while people in the developing world die within two years of receiving diagnosis.” Riley, Health GAP co-founder, also stated his goal that generic AIDS drugs will one day be available to people in developing counties as well as those with money in developed areas like the United States and Europe.

ACT UP is not gone. The size and goals of the organization has changed, but as long as people are willing to fight for the cause, ACT UP will continue to affect change for another 25 years. By sharing goals and ideas with other activism groups today, ACT UP will be able to share its wisdom and knowledge of how to unite a group of people to affect social and political change.


--Virginia Marshall
GET DOWN Youth Blogger

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