"They Were Really Us": The UCSF Community’s Early Response to AIDS

The exhibit highlights how UCSF leaders in the 1980s and 1990s broke ground in the fight against the virus, launching the first AIDS clinic in the world and contributing to the identification of what came to be known as HIV.
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In This Exhibition

By the end of 2017, over one million people in the United States were living with HIV.1 In San Francisco, that figure was 15,990.2

For many, an HIV diagnosis is now manageable. Through antiretroviral therapy, one can avoid developing AIDS, HIV's most critical and life-threatening stage, and live a long and healthy life.

Yet when HIV/AIDS first seized the nation’s attention in the early 1980s, diagnosis meant a death sentence. It was a disease with no name, known cause, treatment, or cure. Fear of infection mixed with fear of people living with the illness, who, early on, seemed to be mostly gay men.3 Ignorance and indifference became as lethal as the virus itself. HIV/AIDS, which began as a medical mystery, turned into one of the most divisive social and political issues of the 20th century.

"They Were Really Us": The UCSF Community’s Early Response to AIDS highlights the ways individual professionals affiliated with the University of California, San Francisco (UCSF) addressed HIV/AIDS from its outbreak in the 1980s to the foundation of the AIDS Research Institute in 1996. Their actions responded to the local need – by 1989, approximately 8,700 people in the city had been diagnosed with AIDS4 – and also broke ground on a larger scale. Their contributions include the establishment of the first AIDS clinic in the world and groundbreaking research towards identifying the virus itself.

These milestones are explored in the first half of this exhibit: Part One: A Mysterious Outbreak, Part Two: Defining a Disease, and Part Three: A Model of Care.

However, professionals at UCSF were only some of the figures at the forefront of battling HIV/AIDS. Part Four: Early Solutions touches on the role of activists in calling for drugs and treatments, some of which UCSF doctors helped develop. Part Five: The Push for Education features materials from community organizations like the San Francisco AIDS Foundation, which worked to improve public understanding of the disease.

Part Six: “We Are People with AIDS, Not ‘Victims’” spotlights the efforts of people with AIDS to make themselves seen as more than simply “patients” or “victims.” Activists played a key role at the Sixth International Conference on AIDS, which UCSF co-sponsored in 1990. This new decade would see the creation of UCSF’s AIDS Research Institute, which continues to impact HIV/AIDS care and research today.

The exhibit title comes from a statement by Dr. Paul Volberding, who co-founded the world’s first AIDS clinic in 1983:

"The patients were exactly our age… all those other ways that we tend to separate ourselves meant very little when you realize that the patients had gone to the same schools, they listened to the same music, they went to the same restaurants. So they were really us… which added to the commitment that I think all of us had.”5

Learn More

Materials in this online exhibit are from the AIDS History Project of UCSF Archives & Special Collections. Digitization of materials used in this exhibit was funded by a grant from the National Endowment for the Humanities (PW-253755-17) “The San Francisco Bay Area’s Response to the AIDS Epidemic: Digitizing, Reuniting, and Providing Universal Access to Historical AIDS Records,” awarded to the UCSF Library, 2017-2020.

The exhibit title is based on a statement made by Dr. Paul Volberding in the documentary Life Before the Lifeboat: San Francisco’s Courageous Response to the AIDS Outbreak.

Transcripts of oral histories on the AIDS epidemic by many individuals mentioned in this exhibit are available through the UC Berkeley Regional Oral History Office.

UCSF has been a global leader in HIV/AIDS treatment, prevention, research, and education for more than 35 years. For up-to-date information, please consult resources available through: UCSF's Division of HIV, Infectious Diseases & Global Medicine, UCSF AIDS Research Institute, and UCSF Health. You may also consult the textbook The AIDS Knowledge Base, edited and authored by leaders at UCSF. Chapters of this landmark book are updated on HIV Insite.

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Definitions

Human Immunodeficiency Virus (HIV)

HIV is a virus that attacks and destroys cells in the human body’s immune system, causing susceptibility to infection and disease.

Acquired Immunodeficiency Syndrome (AIDS)

The most advanced stage of HIV, AIDS is a life-threatening condition in which a person’s immune system can no longer fight off many serious diseases. A person may have HIV without developing AIDS. For more information on the differences between HIV and AIDS, visit HIV.gov.

Immunodeficiency

Immunodeficiency is the state in which the immune system's ability to fight infectious diseases and cancer is compromised or absent.

Kaposi’s sarcoma (KS)

KS is a type of skin cancer. It is considered an AIDS-defining condition; when a person with HIV has KS, it is an indication that the HIV has developed into AIDS.

Pneumocystis carinii pneumonia (PCP)

PCP is a lung infection, caused by a fungus. It is also an AIDS-defining condition.

Azidothymidine (AZT)

AZT was the first official AIDS drug, approved by the Food and Drug Administration in 1987.

Note on terminology

Some historical items featured or cited in this exhibit may include terms that, while in use at the time of their creation, are now considered dated, biased, or offensive.

Note on historical medical documents

Medical research evolves as new discoveries are made. Some historical documents in this exhibit may reflect scientific understanding at the time of their publication, rather than current research findings or diagnostic approaches.

Credits:

“They Were Really Us”: The UCSF Community’s Early Response to AIDS was curated in 2020 by Sabrina Oliveros, MA, Guest Curator at the UCSF Archives & Special Collections. The information in this exhibition has undergone editorial review by experts in the field.

This online exhibit is based on They Were Really Us: The UCSF Community’s Early Response to AIDS, on view at the UCSF Library from October 2019 through September 2020. It was curated by Sabrina Oliveros, with assistance from Mauricio Velasco, and designed by Mark McGowan. Highlights of the physical exhibit are introduced in a free audio tour that contains recordings of featured doctors and nurses sharing their stories.

Using this exhibition:

The text of this exhibition is available under a Creative Commons CC-BY license. You are free to share and adapt it however you like, provided you provide attribution as follows:

"They Were Really Us": The UCSF Community’s Early Response to AIDS curated by Sabrina Oliveros, available under a CC BY 4.0 license. © 2020, Sabrina Oliveros and Regents of the University of California.


References:

  1. Centers for Disease Control and Prevention, HIV Surveillance Report, 2018 Preliminary Edition, Volume 30, November 2019, accessed March 25, 2020, http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html.
  2. San Francisco Department of Public Health Population Health Division, HIV Epidemiology Section. HIV Epidemiology Annual Report 2018, September 2019, accessed March 25, 2020, https://www.sfdph.org/dph/files/reports/RptsHIVAIDS/HIV-Epidemiology-Annual-Report-2018.pdf.
  3. Lawrence K. Altman, “New Homosexual Disorder Worries Health Officials,” May 11, 1982, https://www.nytimes.com/1982/05/11/science/new-homosexual-disorder-worries-health-officials.html.
  4. Erin Allday, “Last Men Standing,” The San Francisco Chronicle, March 2016, https://projects.sfchronicle.com/2016/living-with-aids/story.
  5. Shipra Shukla, “Life Before the Lifeboat: San Francisco’s Courageous Response to the AIDS Outbreak,” University of California, San Francisco (UCSF), 2011, video, 28:56, https://www.youtube.com/watch?v=rOauL9VDpSk.