History HIV AIDS IV Drug Use

Historical Note

The AIDS Coalition to Unleash Power (ACT UP / Boston) was founded in December 1987 by activists Raymond Schmidt, Stephen Skuce, Donald Smith, and Paul Wychules to focus local efforts to speed up the development of AIDS treatments, educational programs, and prevention strategies. The membership was a diverse, nonpartisan group of people united in anger and committed to direct action to end the AIDS crisis. The organization negotiated with government officials, public health policymakers, medical personnel, researchers, pharmaceutical manufacturers, and others to bring about changes to meet the demands of the AIDS crisis. When negotiations failed, they held dramatic demonstrations, sometimes employing civil disobedience, to effect changes to save lives. The organization's motto was "Silence = Death."

In January 1988, the group held its first protest at the Boston offices of the Department of Health and Human Services, regarding delays and red tape surrounding approval of AIDS treatment drugs. ACT UP / Boston's agenda included demands for a compassionate and comprehensive national policy on AIDS; a national emergency AIDS project; ethical drug testing and access to experimental drugs outside of clinical trials; intensified research, and treatment efforts; and a full-scale national educational program within reach of all. The organization held die-ins and sleep-ins, provided "freshman orientation" for Harvard Medical School students, negotiated successfully with a major pharmaceutical corporation, affected state and national AIDS polices, pressured health care insurers to provide coverage for people with AIDS, influenced the thinking of some of the nation's most influential researchers, served on the Commonwealth committee that created the nation's first online registry of clinical trials for AIDS treatments, distributed information and condoms to the congregation at Cardinal Law's Confirmation Sunday services at Holy Cross Cathedral in Boston, and made aerosolized pentamidine an accessible treatment in New England. Moreover, ACT UP / Boston was responsible for one of the first needle exchange programs for IV drug users in the country. Members voted in 1996 to cease holding their weekly meetings.

1987

Small group of activists meet in December to plan ways to save the lives of people with AIDS.

1988

ACT UP / Boston holds its first public meeting on January 6.

First demonstration calling attention to the federal government's refusal to release promising AIDS treatment takes place on January 26.

Demonstrates with ACT UP / New York, Mass ACT OUT, and Cure Aids Now in New Hampshire at the Democratic and Republican presidential debates. Discovers that all clinical trials at Massachusetts General Hospital expressly prohibit the use aerosolized pentamidine (AP), a drug used to prevent Pneumocystis Carinii Pneumonia (PCP).Organizes "Die-in" at Massachusetts General Hospital to focus on the issue of aerosolized pentamidine. Meets with representatives of the Commonwealth of Massachusetts Executive Office of Human Services, Department of Public Health, and Governor Dukakis' national campaign staff. ACT UP / Boston is invited to meetings of the Governor's Task Force on AIDS.

Sets up mock hospital unit in front of the home of Michael Dukakis, the Democratic presidential candidate.

During "Take Back the Church" rally, members distribute condoms and bilingual safe sex leaflets after Confirmation services at Holy Cross Cathedral.

Celebrates Gay Pride Day with visual display of an IV unit labeled "placebo" feeding into a coffin.

Holds round-the-clock vigil at the Names Project site.

Collaborates with ACT UP / New York to confront Food and Drug Administration Commissioner Frank Young at 2nd International Lesbian/Gay Health Conference and AIDS Symposium.

Builds mock cemetery on Fisons Pharmaceutical Company's property prior to delivering its demands. Fison agrees to list its AP protocol in the AmFAR Directory for the first time and provides ACT UP / Boston with detailed information on the nebulizer used in trials.

Instructs first-year Harvard Medical School students on medical elitism, research ethics, failure of the current clinical trial system, doctor and patient relationships, and the problems with AZT. Holds demonstration outside of Medical School illustrating the true facts regarding Harvard's clinical trial system.

Protests against Anti-Defamation League's presentation of humanitarian award to Bernard Cardinal Francis Law.

Commits first act of civil disobedience against John Hancock Insurance Company for its reluctance to confirm the efficacy of the drug AP in treating Pneumocystis Carinii Pneumonia. Demonstration brings the question of who should pay for AIDS treatment to national attention.

1989

Presents proposals on several AIDS related issues at the day-long retreat held by the Department of Public Health.

Continues to apply pressure to insurance industry by sending "holiday greeting card" from thousands of people who died after initial bout with Pneumocystis Carinii Pneumonia.

In late January, John Hancock Insurance Company changes policy and agrees to pay for AP as primary prophylaxis.

Convinces Harvard teaching hospitals to institute Community Advisory Board to oversee Harvard's clinical trials of experimental AIDS treatments.

1990-1992

Pressures drug manufacturer Astra to offer experimental drug Foscarnet that treats AIDS opportunistic infection CMV Retinitis free of charge.

Helps create first online Clinical Trial Registry for experimental AIDS therapies.

Sit-in at offices of Commonwealth of Massachusetts Health and Human Services initiates action for a state-wide education campaign.

Publishes ATTITUDE! newsletter.

Stops traffic on Huntington Avenue during a major demonstration at the Harvard Medical School, demanding that the FDA immediately approve the antiviral drug ddI.

Successfully negotiates with the pharmaceutical giant Burroughs Wellcome to provide access to the anti-pneumonia drug 566C80, before it received full FDA approval.

1995-1996

Holds a "die-in" at Deaconess Hospital to call attention to Progressive Multifocal Leukoencephalopathy (PML) and the fact that approved drugs such as alpha and beta interferon, acyclovir, and heparin are effective against PML but not used because they aren't approved for that purpose.

ACT UP, the Reproductive Rights Network, and the Coalition for Lesbian and Gay Civil Rights protest Cardinal Law's stance on safe-sex education and reproductive rights during ordination service at the Holy Cross Cathedral.

ACT UP / Boston's Women's Group pressures Center For Disease Control to redefine AIDS to include certain infections that primarily affect women living with AIDS.

Rubber Fairies distribute condoms and other prevention materials in public places in Boston.IV League distributes clean needles and prevention materials to IV drug users.

Convenes a full-day summit meeting in Boston on the topic of increasing pre-approval access to HIV treatments. The meeting is attended by representatives from the world's largest pharmaceutical companies as well as the FDA.

ACT UP / Boston membership decides to stop holding general meetings.

https://actupny.org/documents/FDAhandbook6.html

https://actupny.org/documents/FDAhandbook1.html

https://actupny.com/actions/

Chronology

• 1987 Small group of activists meet in December to plan ways to save the lives of people with AIDS.

• 1988 ACT UP / Boston holds its first public meeting on January 6.

• First demonstration calling attention to the federal government's refusal to release promising AIDS treatment takes place on January 26.

• Demonstrates with ACT UP / New York, Mass ACT OUT, and Cure Aids Now in New Hampshire at the Democratic and Republican presidential debates. Discovers that all clinical trials at Massachusetts General Hospital expressly prohibit the use aerosolized pentamidine (AP), a drug used to prevent Pneumocystis Carinii Pneumonia (PCP).Organizes "Die-in" at Massachusetts General Hospital to focus on the issue of aerosolized pentamidine. Meets with representatives of the Commonwealth of Massachusetts Executive Office of Human Services, Department of Public Health, and Governor Dukakis' national campaign staff. ACT UP / Boston is invited to meetings of the Governor's Task Force on AIDS.

• Sets up mock hospital unit in front of the home of Michael Dukakis, the Democratic presidential candidate.

• During "Take Back the Church" rally, members distribute condoms and bilingual safe sex leaflets after Confirmation services at Holy Cross Cathedral.

• Celebrates Gay Pride Day with visual display of an IV unit labeled "placebo" feeding into a coffin.

• Holds round-the-clock vigil at the Names Project site.

• Collaborates with ACT UP / New York to confront Food and Drug Administration Commissioner Frank Young at 2nd International Lesbian/Gay Health Conference and AIDS Symposium.

• Builds mock cemetery on Fisons Pharmaceutical Company's property prior to delivering its demands. Fison agrees to list its AP protocol in the AmFAR Directory for the first time and provides ACT UP / Boston with detailed information on the nebulizer used in trials.

• Instructs first-year Harvard Medical School students on medical elitism, research ethics, failure of the current clinical trial system, doctor and patient relationships, and the problems with AZT. Holds demonstration outside of Medical School illustrating the true facts regarding Harvard's clinical trial system.

• Protests against Anti-Defamation League's presentation of humanitarian award to Bernard Cardinal Francis Law.

• Commits first act of civil disobedience against John Hancock Insurance Company for its reluctance to confirm the efficacy of the drug AP in treating Pneumocystis Carinii Pneumonia. Demonstration brings the question of who should pay for AIDS treatment to national attention.

• 1989 Presents proposals on several AIDS related issues at the day-long retreat held by the Department of Public Health.

• Continues to apply pressure to insurance industry by sending "holiday greeting card" from thousands of people who died after initial bout with Pneumocystis Carinii Pneumonia.

• In late January, John Hancock Insurance Company changes policy and agrees to pay for AP as primary prophylaxis.

• Convinces Harvard teaching hospitals to institute Community Advisory Board to oversee Harvard's clinical trials of experimental AIDS treatments.

• 1990-1992 Pressures drug manufacturer Astra to offer experimental drug Foscarnet that treats AIDS opportunistic infection CMV Retinitis free of charge.

• Helps create first online Clinical Trial Registry for experimental AIDS therapies.

• Sit-in at offices of Commonwealth of Massachusetts Health and Human Services initiates action for a state-wide education campaign.

• Publishes ATTITUDE! newsletter.

• Stops traffic on Huntington Avenue during a major demonstration at the Harvard Medical School, demanding that the FDA immediately approve the antiviral drug ddI.

• Successfully negotiates with the pharmaceutical giant Burroughs Wellcome to provide access to the anti-pneumonia drug 566C80, before it received full FDA approval.

• 1995-1996 Holds a "die-in" at Deaconess Hospital to call attention to Progressive Multifocal Leukoencephalopathy (PML) and the fact that approved drugs such as alpha and beta interferon, acyclovir, and heparin are effective against PML but not used because they aren't approved for that purpose.

• ACT UP, the Reproductive Rights Network, and the Coalition for Lesbian and Gay Civil Rights protest Cardinal Law's stance on safe-sex education and reproductive rights during ordination service at the Holy Cross Cathedral.

• ACT UP / Boston's Women's Group pressures Center For Disease Control to redefine AIDS to include certain infections that primarily affect women living with AIDS.

• Rubber Fairies distribute condoms and other prevention materials in public places in Boston.IV League distributes clean needles and prevention materials to IV drug users.

• Convenes a full-day summit meeting in Boston on the topic of increasing pre-approval access to HIV treatments. The meeting is attended by representatives from the world's largest pharmaceutical companies as well as the FDA.

• ACT UP / Boston membership decides to stop holding general meetings.