Definition
The AIDS Coalition to Unleash Power (ACT UP) was an activist group that started up in the 1980s (Epstein, 1996). According to ACT UP themselves, their first official meeting was in March of 1987 in New York, and they now have thousands of members in different chapters across the country, although the New York chapter continues to be the largest and most involved of them all. The group was formed by the LGBT communities in the United States in response to the lack of coordinated and efficient response to the AIDS epidemic that swept the country in the early 1980s. There were over 100 national and international chapters of ACT UP in 199l, and although a more diverse membership arose as time went on, ACT UP was composed largely of just white, gay men in its beginning years (Gould, 2002). The chapters are anonymously run, and meetings are largely unorganized. According to ACT UP themselves, meeting leaders are elected and rotate from session to session, and the only goal is to end the AIDS crisis (“How to Start an ACT UP Chapter,”). The group is known for their unique and always nonviolent protest tactics that separate them from other previous social activism groups, and it stood in particular contrast to society’s existing stereotypes about the gay community (Haldi, 1999).
ACT UP’s demonstrations often targeted institutions that were regularly responsible for managing the response to the AIDS epidemic, such as government organizations like the FDA and major pharmaceutical companies responsible for producing the drugs to treat AIDS. They would sit in on official meetings, lead intrusive protests and boycott companies, and engage in many other forms of civil disobedience (Haldi, 1999). Some of their more publicized accomplishments include halting action at the New York Stock Exchange for a few hours and shutting down the FDA for a day in late 1980s. This unexpected and more aggressive style of ACT UP also largely changed the way society as a whole viewed AIDS and the LGBT community during this time (Haldi, 1999). Previously, AIDS activism was centered mostly around providing care-based support for people suffering from the disease, but ACT UP began a much more aggressive movement by engaging in some of these highly controversial tactics to force pharmaceutical companies and the government to pay attention to these marginalized populations that were suffering heavily (Gould, 2002). Figure 1 is an example of the more provocative style ACT UP commonly used to initiate change. Their frequent high-profile protests and demonstrations made the issue relevant for many people that previously had no concern with it, and this public acknowledgement of the issue set the stage for addressing the large social stigmas associated with HIV/AIDS during this time.
Figure 1. An example of a banner commonly seen at ACT UP demonstrations. Source: ACT UP New York
Historical Context
Human immunodeficiency virus (HIV) is a sexually transmitted infection that first appeared in the United States in the early 1980s and soon reached epidemic proportions. It is still not clear how or where exactly the disease began, and the possible origins of the disease in the United States are still being studied and mapped out (Gilbert et al., 2007). It is known that HIV affects the immune system by reducing the number of immune system cells, specifically one type of cell known as a CD4+ T cell (Weiss, 1993). Once a person’s CD4 cell count reaches below a certain level, they are then diagnosed with acquired immunodeficiency syndrome (AIDS). Few people actually die from the disease itself; because the immune system is so weak towards the later stages of the disease, most die from other infections that the body would normally be able to fight off on its own.
Because HIV/AIDS was first noticed in only particular populations (specifically Haitians, injection drug users (IDUs), and gay men), the disease developed with a large social stigma associated with it. With the LGBT community still being highly involved in the fight for their rights at this time, this group was already at the forefront of the nation’s attention when the disease struck. This, combined with the belief that HIV/AIDS was a “gay disease” lead to many complexities in developing treatments and preventions for the disease (Mahajan et al., 2008). A discussion of the history and accounting of the social stigmas associated with HIV/AIDS would be very complicated and lengthy, so I will not dive into them here; I only wish to mention that they do exist and had a major influence on our response to the epidemic then, including the development of ACT UP, which continues to shape our response today.
It is also important to note that while there were still other populations that were believed to be at similar heightened risk for infection, the gay community faced a great deal of stigma associated with the AIDS epidemic (Herek & Capitanio, 1999). They were also the affected group that most publicly rallied together and fought for their right to care. Because the gay communities were so large and continuing to grow in dozens of cities across the United States (led by those of New York and San Francisco), they were more easily able to mobilize when they needed to because they already had stronger community bonds in place. This was aided by their previous community mobilization during the movement for gay rights, so the framework for this type of social activism for AIDS treatment had already been put into place. In addition, because these groups were largely dominated by white men, they were unusually good at raising money and political influence compared to other commonly oppressed groups (Epstein, 1996).
Controversy/Perspectives
While there are many controversies surrounding the overall AIDS epidemic and its true origins, there are also controversies surrounding ACT UP specifically. Some of their methods and actions were seen as very aggressive, provocative and overall unexpected from a gay AIDS activist group. In one case, members of ACT UP staged a “die-in” during a Catholic Church service where they laid on the ground, outlined their bodies in chalk, and brandished fake tombstones to protest the church’s recent comments about homosexuality (Christiansen & Hanson, 1996). A picture of such a protest is shown in Figure 2. Their unique approaches to their demonstrations helped bring a fresh perspective on how to mobilize the community around this issue.
Figure 2. An example of a “die-in” at the annual AIDS conference in San Francisco in 1990. Source: http://www.theradicalnotion.com/act-up/
But it is not just the specific methods of ACT UP that are controversial. The ways in which the general AIDS activism movement developed and the principles on which it is based are also particularly interesting. This movement was the first social movement in the US to make working (and highly effective) activists out of the victims of a disease (Epstein, 1996). Although the Black Panther Party used sickle cell anemia as a tool to gain political power and influence (Nelson, 2011), ACT UP was different in that the people suffering from the disease were the ones who took the initiative on their own and stood up for their right to access care and to be treated, no matter who they were. The AIDS epidemic and ACT UP’s creation had merely highlighted the already existing politicization of medical issues (Epstein, 1996). In fact, we can still see remnants of this today; there is still no cure or vaccine for HIV, and doubts are still present about the origins of the disease and why the government’s response was so ineffective and delayed.
Relation to Politics of Health
The issue of AIDS often turned medical issues into political ones. ACT UP’s heavy involvement in the process of government regulations and pharmaceutical processes suddenly lead to the mass involvement of an ostracized group of society in some of these institutional regulation processes. Many of their protests revolved around the FDA approval of AZT one of the only drugs approved at the time to treat HIV infection. They held many demonstrations in protest of what they saw as an unnecessarily slow process that was delaying the approval of what was thought to be the only effective treatment for HIV infection at the time. The many regulations, meetings, and processes the drug had to go through to be approved for sale was delaying treatment for many people infected with HIV, and ACT UP claims that these extensive regulations, “resulted in thousands dead from lack of access to life-saving drugs” (“ACT UP Accomplishments and Partial Chronology,” 2009). After the drug was approved, the issue was no longer one of finding a treatment and preventing infection; the goal now became getting the pharmaceutical companies to provide these drugs at an affordable price. AZT was originally priced at around $8,000 per year, a price that was unaffordable for many of those living with AIDS (Park, 2017). But on September 18, 1989 (only 4 days after one of ACT UP’s protests stopped the New York Stock Exchange for a period of time), the pharmaceutical company producing AZT, Burroughs Wellcome, announced they would reduce the price of AZT by 20% (Cimons & Zonana, 1989).
In addition to some of the influence they had directly on policy changes, the public advocacy of ACT UP is a primary example of how activist groups can be a major influence on scientific knowledge production (Epstein, 1995). Because ACT UP was so heavily involved with lobbying for these institutions to change their processes and fighting for pharmaceutical companies to give the public the drugs they needed, it largely changed the way people thought about these institutions. This issue was unknown or not a concern for many people at the time, so ACT UP was the major channel through which most of the naïve general public learned about the AIDS epidemic. Their widespread influence and publicity gave them control over how a large portion of the population got their information about AIDS and how they thought about the issue; their heavy emphasis on the right to treatment for people suffering from AIDS could easily be transferred to others who were simply aware of their demonstrations. Their unique style made sure that they were memorable, but they also always had a singular message and argument behind them. ACT UP was one of the most influential groups in beginning the movement of AIDS activism, and this legacy can still be seen in some government policies, our knowledge of HIV/AIDS, and the tactics of a variety of other activism groups.
Additional Resources
http://www.actupny.org/documents/capsule-home.html
This website is a well-documented collection of ACT UP’s history. It includes the dates of all major demonstrations organized by ACT UP, specifically the New York chapter, and when some relevant changes in policies occurred in relation to these demonstrations. While their descriptions of these protests are likely biased because this website was created by ACT UP themselves, it is the most coherent and complete timeline I could find of all of ACT UP’s history. It would be a good starting point for anyone who wanted to know more about specific demonstrations, when they occurred, and what they were trying to accomplish within the larger-scheme of the organization.
http://www.actuporalhistory.org/
This is the website of the ACT UP Oral History project. It is a collection of interviews and their transcripts with over 180 past members of ACT UP that are free for anyone to view. The range of people being interviewed shows the diversity of ACT UP and its followers, and the project reveals a more individual perspective on the issue, rather than simply publicizing the mass accomplishments of the organization. For those wishing to know more about the more personal sides and stories behind ACT UP and its members, this website would be a great resource.
This is the most current website of ACT UP New York. While I did not discuss it much in my entry, ACT UP has certainly changed since their founding in 1987, and it would be an interesting topic to learn about. This website has all of the latest news about what the New York chapter is planning, as well as current events related to AIDS activism. It is a great resource to compare to older things produced by ACT UP to see how the organization has changed (and remained the same) in many ways as time has passed and how things happening in the world have shifted their goals and tactics since their founding.
References
ACT UP Accomplishments and Partial Chronology. (2009). Retrieved from https://endaids.actupny.com/the-community
Christiansen, A. E., & Hanson, J. J. (1996). Comedy as cure for tragedy: ACT UP and the rhetoric of AIDS. Quarterly Journal of Speech, 82(2), 157-170.
Cimons, M., & Zonana, V. (1989). Manufacturer Reduces Prize of AZT by 20%. Los Angeles Times. Retrieved from http://articles.latimes.com/1989-09-19/news/mn-111_1_price-cut
Epstein, S. (1995). The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology, & Human Values, 20(4), 408-437.
Epstein, S. (1996). Impure science: AIDS, activism, and the politics of knowledge (Vol. 7): Univ of California Press.
Gilbert, M. T. P., Rambaut, A., Wlasiuk, G., Spira, T. J., Pitchenik, A. E., & Worobey, M. (2007). The emergence of HIV/AIDS in the Americas and beyond. Proceedings of the National Academy of Sciences, 104(47), 18566-18570.
Gould, D. (2002). Life during wartime: Emotions and the development of ACT UP. Mobilization: An international quarterly, 7(2), 177-200.
Haldi, A. (1999). AIDS, anger and activism: ACT UP as a social movement organization. Waves of protest: Social movements since the sixties, 135-150.
Herek, G. M., & Capitanio, J. P. (1999). AIDS stigma and sexual prejudice. American behavioral scientist, 42(7), 1130-1147.
How to Start an ACT UP Chapter. Retrieved from http://www.actupny.org/documents/start_chapter.html
Mahajan, A. P., Sayles, J. N., Patel, V. A., Remien, R. H., Ortiz, D., Szekeres, G., & Coates, T. J. (2008). Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS (London, England), 22(Suppl 2), S67.
Nelson, A. (2011). Body and soul: The Black Panther Party and the fight against medical discrimination: U of Minnesota Press.
Park, A. (2017). The Story Behind the First AIDS Drug. Retrieved from http://time.com/4705809/first-aids-drug-azt/
Weiss, R. A. (1993). How does HIV cause AIDS? Science, 260(5112), 1273-1279.
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