Book summary “How to Survive a Plague”: summary

Introduction

You face a world where institutional failure and systemic indifference threaten your survival during a sudden public health catastrophe. The medical establishment ignores your community while a lethal pathogen sweeps through your cities unchecked.

David France chronicles how ordinary citizens, activists, and scientists collaborated to transform AIDS from an automatic death sentence into a manageable chronic condition. You discover how radical direct action and rigorous scientific literacy can overturn corrupt medical hierarchies and accelerate lifesaving treatments.

The book details the emergence of the epidemic, the mobilization of militant patient networks, and the eventual reform of clinical drug trials. You will find answers to several critical questions as you read this history:

• How do grassroots activists force massive pharmaceutical companies and federal regulators to change drug policies?
• What methods do laypeople use to master complex medical science and challenge established researchers?
• How does a marginalized community organize survival networks when the government refuses to provide help?

1. The Dawn of the Plague

The public health crisis began amidst intense anti-gay prejudice as rare cancers and infections struck homosexual men, while medical pioneers struggled to understand the underlying causes.

The New York Times published the first public notice of a rare and fatal cancer striking gay men in July 1981, marking the official dawn of the public health crisis. The article described cases of Kaposi's sarcoma concentrated in Manhattan and San Francisco among gay men with high sexual activity and frequent venereal and parasitic infections, though officials initially doubted it was contagious. At the time of the first report, forty-one homosexuals with rare cancer were mentioned, and one in five patients was already dead. Some patients reported up to ten sexual encounters each night up to four times a week.

Men reading the newspaper on ferries to Fire Island checked each other's flesh over the July 4 weekend and found purple lesions by the dozens.

Kaposi's sarcoma

The emergence of the AIDS epidemic coincided with a period of intense anti-gay legislation, widespread prejudice, and violent attacks against homosexuals. Despite the growing visibility and political clout of the gay community following the 1969 Stonewall Riots, mainstream institutions and media outlets frequently minimized anti-gay violence while promoting discriminatory laws. During the 1970s, a fierce sexual revolution unfolded alongside intense anti-gay legislation.

A madman drove through the Village emptying a submachine gun into crowds of gay men, killing two and injuring seven, an event that received minimal coverage in The New York Times.

Early Medical Investigations

Dr. Joe Sonnabend recognized early clusters of opportunistic infections and conditions among gay men, tracing them back to a broader immune system breakdown driven by multiple venereal infections. Having arrived in New York in 1969, Sonnabend returned with a research grant in 1977 and opened a boutique practice for gay men in Greenwich Village after borrowing 25000 dollars at age forty-four. He observed high rates of lymphadenopathy, venereal diseases, and protozoan infestations, but grew furious at the institutional silence surrounding the spread of Kaposi's sarcoma. Official statistics showed a 7000 percentage increase in unusual protozoan infestations over the previous six years, and Sonnabend diagnosed lymphadenopathy in 40 percentage of his patients.

Sonnabend discovered eighteen cases of Kaposi's sarcoma at NYU Medical Center through Dr. Joyce Wallace and Dr. Alvin Friedman-Kien before the news was made public. Friedman-Kien had seen only seven or eight cases of KS in elderly men over his long career, while Dr. Marcus Conant initially reported three cases in San Francisco before updating the total to six.

Larry Kramer seized upon reports of the gay cancer to mobilize the community, raising funds and warning of the lethal consequences of the sexual revolution he had previously critiqued. Having alienated the community with his 1978 controversial novel Faggots, Kramer viewed the medical crisis as a vindication of his warnings about reckless sexual behavior and stepped up to organize fundraising efforts for medical research.

Kramer hosted a gathering of eighty people at his apartment where Dr. Friedman-Kien described cases of pneumocystis carinii pneumonia, which normally struck hundreds of Americans in a year, and raised 6635 dollars for research efforts.

2. Scientific Theories and Community Action

Researchers and activists formed foundational organizations and proposed competing models of immune collapse while establishing early patient care networks.

Dr. Joseph Sonnabend examined the sera of frightened young men filling his office through the week every Saturday morning under microscopes at an NYU Medical Center lab. He identified extremely high levels of alpha interferon, which proved the disease was driven by an active pathogen rather than lifestyle chemicals or homosexuality per se.

Nathan Fain, Lawrence Mass, Edmund White, Paul Popham, Paul Rapoport, and Larry Kramer met at Kramer's apartment on January 4, 1982, and formed the Gay Men's Health Crisis after Kramer shouted out the name. They raised 11,806.55 dollars raised so far for Dr. Friedman-Kien's research.

The Immune-Overload Model

Sonnabend tested his theory by exposing the rectums of male rabbits to large quantities of rabbit ejaculate, triggering similar antibody conditions to his patients. You could follow these practices derived from the immune-overload model:

• Drop sexual exposure for a year or more to allow an overloaded immune system time to recover
• Abstain from sexual overconsumption to prevent cumulative immune damage

Sonnabend prescribed Bactrim to Michael Callen after his cryptosporidiosis diagnosis and subsequently recommended it to all advancing patients, while other doctors like Barbara Starrett observed similar decreases in PCP. You should consider this intervention:

• Continue taking one double-strength Bactrim tablet two times a day as prophylaxis for advancing disease

Dr. Sonnabend sent Michael Callen to Boston for the mechanical blood-cleaning procedure and noted that Callen felt significantly less fatigued afterward. You can understand plasmapheresis as a mechanical treatment:

• Reroute blood out of one arm, pass it through a centrifuge, and return it through the other arm minus antibodies to clean the blood

Founding the Gay Men's Health Crisis

Rodger McFarlane operated a home phone as a 24-hour hotline receiving one hundred calls daily from stranded, fired, and desperate patients, while volunteer lawyers prepared living wills and health care proxies. You can protect patients from institutional cruelty using legal safeguards:

• Use volunteer lawyers for estate planning, living wills, and health care proxies to protect patients from estranged family members

GMHC raised $32,086 raised at the first major public disco party event at Paradise Garage. By July 1982, the CDC list reached 452 cases on the CDC list by July 1982. Among them, 79 men out of 452 cases strenuously denied being gay, alongside 34 Haitians diagnosed in five American states by mid-1982.

Dr. Ammann matched the coded identifying numbers from a premature baby's blood donations at Irwin Memorial Blood Bank with city health department records, identifying a donor who later died of PCP. The transfusion involved 21 separate people's blood transfused into the sick toddler, and three-quarters of all those on factor VIII already infected. You must implement administrative safeguards:

• Require blood donation applicants to fill out questionnaires to screen out individuals from at-risk communities

Mathilde Krim invited oncologist Craig Metroka to send furtive KS patients past hospital security to her lab after six o'clock so she could safely collect samples without institutional detection. You can bypass administrative roadblocks through direct measures:

• Store biological samples separately and collect them secretly after hours to bypass institutional bans and administrative roadblocks

Callen and Berkowitz submitted their second warning article as a two-column paid advertisement enclosed in a black box for $240, which unexpectedly generated a flood of mail and created the world's first patient advocacy group. You can utilize alternative publishing channels:

• Publish warnings and personal experiences regarding medical treatments as paid advertisements when editorial channels refuse them

3. Safe Sex and the Patient Empowerment Movement

Pioneering activists reframed sexual transmission around body fluids and established patient autonomy through landmark manifestos and underground buyers clubs.

Richard Berkowitz pioneered the concept of safe sex by analyzing non-fluid-exchange sexual practices. After observing that clients desired S&M and bondage without fluid exchange, Berkowitz realized that promiscuity per se was not the sole cause of AIDS, arguing that sex could be made safe by categorizing high-risk and low-risk activities. He earned $100 per trick, five times a week, totaling $500 a week.

Berkowitz was begged by a former client to wear his Frye boots for a session involving no bodily fluids, which inspired him to list specific safe acts. You can navigate intimacy during an epidemic by following concrete protective steps:

• Avoid high-risk fluid exposure
• Engage in fluid-free expressions such as hugging, voyeurism, spanking, bondage, and restraint

How to Have Sex in an Epidemic

Michael Callen and Richard Berkowitz researched behavioral change manuals and medical models, concluding that avoiding exposure to semen was key. They established that recreational drugs impaired decision-making and that affection and responsibility could prevent disease transmission. In 1981, 1 percent or less of gay men in New York used condoms.

Callen and Berkowitz published their findings in the forty-six-page monograph How to Have Sex in an Epidemic, and the initial order for the first printing reached 5,000 copies. Safe sex requires specific behavioral adjustments:

• Safe sex requires that you be sober because alcohol, poppers, and other recreational drugs can impair your decision-making abilities.
• Gauge yourself honestly regarding your substance use and sexual practices.

The Denver Principles

The People With AIDS movement was founded in Denver, establishing patient autonomy and rejecting the terminology of victimhood. Activists from New York and San Francisco convened at a lesbian and health workers conference, where they united to form the National Association of People With AIDS and drafted a manifesto of rights and responsibilities. A total of 400 health professionals attended the conference in Denver.

At the closing session, eleven men including Bobbi Campbell and Michael Callen unfurled a twenty-foot banner reading 'FIGHTING FOR OUR LIVES' and read the points of the Denver Principles aloud. Patients must organize their own governance and advocacy structures:

• Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
• Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
• Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
• Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.

Facing refusals from pharmaceutical companies to supply the promising lipid compound AL721, activists and doctors formed an underground buyers club to manufacture and distribute it themselves. When Praxis Pharmaceuticals refused to release its stock of AL721 before formal trials, chemist Stephen Roach obtained the volatile formula from a sympathetic company researcher. Michael Callen, Joe Sonnabend, and Tom Hannan incorporated the PWA Health Group, contracted with a chemical company, and used church spaces to distribute the treatment.

Stephen Roach and Tom Hannan visited Praxis headquarters unannounced, where researcher Claire Klepner taught Roach how to manufacture AL721 using acetones and eggs despite the extreme safety hazards. The initial order volume reached 20,000 dollars in preorders that forced the PWA Health Group to close its initial list, and total order volume reached 100,000 dollars by the time of the second distribution. You can replicate underground distribution methods through structured protocols:

• Collect $200 preorders for a three-month supply from patients internationally.
• Contract with an independent chemical company to compound the raw ingredients.
• Distribute the substance from a supportive religious institution like Judson Memorial Church.
• Instruct recipients via instructional videos on how to measure, freeze into ice cube-sized bricks, and blend AL721 into orange juice.

Facing a lack of medical care and FDA approvals, patients built an extensive underground network to smuggle and distribute promising alternative treatments. The PWA Health Group operated a loft in Chelsea functioning like an apothecary, providing what-the-hell drugs with some efficacy and no evidence of causing harm. Volunteers flew to Tokyo monthly to bring back suitcases of dextran sulfate, an unapproved blood thinner believed to slow disease progression, and fought off FDA threats with public pressure and legal defense.

Derek Hodel held a withering press conference vowing a protracted battle when the FDA threatened a crackdown on the unlawful importation of dextran sulfate. By that time, 2,500 PWAs had taken DHPG under the Compassionate Use program, while 24 known opportunistic infections were responsible for 90 percent of all AIDS deaths.

James D'Eramo educated staff on Koch's Postulates, noting that only the isolation of the agent had been partially met, meaning the virus could alternatively be a symptom of an already-impaired immune system rather than the primary cause. At the New York Native, James D'Eramo reviewed Koch's Postulates for the staff to demonstrate that calling the virus settled science was a huge stretch. Scientific validation requires strict adherence to established criteria:

• The suspected agent must be present in everyone suffering from the disease but in no one who is healthy
• The agent must be isolated from the carrier and must be able to grow in pure culture
• When injected into a susceptible and healthy laboratory animal, the agent must be detectable and produce disease
• The agent must be isolated from the newly infected animal and prove to be identical to the original sample

Peter Staley utilized mathematical calculations to invent an arbitrage strategy in short-term government bonds at J.P. Morgan, generating millions in profit while navigating a hostile, homophobic trading floor culture. By calculating the true interest yield on short-shorts rather than relying on presumed industry rates, Staley amassed billion-dollar long and short positions while maintaining stealth through broker intermediaries like Lou Olivieri. The strategy was projected to yield $1 million to $5 million in profits for the bank, with a portfolio at times surpassing $1 billion among 24 traders plying the short-short market worldwide.

Peter Staley secured tickets for Tommy Kalaris for a sold-out Huey Lewis and the News concert from his broker Lou Olivieri, boosting his career standing at J.P. Morgan. You can execute market arbitrage through systematic rules:

• Take into account true interest rates rather than presumed industry rates
• Amass a portfolio of undervalued short-short bonds to hold for months
• Bet long and short in equal numbers to bring risk close to zero
• Use brokerage intermediaries like Garban or Cantor Fitzgerald to keep trading strategies secret from competitors

A bitter debate divided AIDS activists and health officials over whether commercial sex venues should be voluntarily reformed through safe sex guidelines or forcibly shuttered by the government. While groups like the Coalition for Sexual Responsibility pushed for voluntary measures such as distributing condoms and chlorine, activists like Michael Callen and Larry Kramer inspected unhygienic bathhouses and argued that the venues facilitated deadly transmission. By July, 3 of the city's 12 bathhouses closed voluntarily, despite an admission fee of $17.50 at the Club Baths.

Michael Callen visited commercial bathhouses like the Club Baths, East Side Sauna, and the Everard to document ongoing unsafe practices and the absence of health literature. Venue operators and organizers could implement basic risk reduction:

• Voluntarily distribute free condoms and safe sex literature
• Use high levels of chlorine in swimming pools and Jacuzzis
• Make water-based lubricants and soap available in individual packages or dispensers

Michael Callen researched long-term AIDS survivors, revealing that a significant minority lived for years post-diagnosis, challenging the dogma of 100 percent mortality. Prompted by a CDC list identifying twenty-six surviving patients from the first wave of the plague, Callen placed an ad in the Newsline to interview long-term survivors. He discovered that those surviving three or more years shared traits like grit, proactive use of PCP prophylaxis, avoidance of toxic drugs like AZT, and diverse coping strategies.

The Village Voice published Callen's findings on the front page under the title 'Not Everyone Dies of AIDS,' exposing that 15 percent of all people with AIDS in New York City had survived five or more years. You can gather data and manage health proactively:

• Place an ad in community publications to gather data on long-term survivors.
• Refuse toxic or unproven therapies while seeking out effective prevention for opportunistic infections.

4. ACT UP and the Revolt of the Guinea Pigs

Militant direct action, professionalized treatment committees, and strategic corporate negotiations forced federal regulators and pharmaceutical companies to reform clinical trials and drug access.

Larry Kramer mobilized the gay community to form the AIDS Coalition to Unleash Power (ACT UP). Peter Staley and 600 protesters marched to Wall Street, where 17 individuals staged a sit-in and got arrested while media outlets covered the demonstration. Burroughs Wellcome charged 10,000 dollars a year for AZT at the time. You can organize disruptive demonstrations to target institutional apathy:

• Protest on the doorstep of institutions like Memorial Sloan Kettering, the United Nations, The New York Times, or Wall Street.
• Deploy striking and clever protest posters to convey a direct message.
• Seize major intersections with a human blockade to force police arrests and media attention.

The FDA Rockville Protest

Iris Long's Treatment + Data Committee brought together non-scientists to master regulatory bodies. By January 1988, 40 AIDS drugs were approved for clinical trials, but out of 49,342 total cases, only 25 patients in the entire country were enrolled in trials evaluating medicines other than AZT. Gregg Bordowitz and Peter Staley organized 1,200 activists at All Souls Church prior to a massive direct-action protest at FDA headquarters in Rockville. Demonstrators blocked traffic, simulated corpses with tombstones, and got 185 individuals arrested with 25-dollar fines. You can prepare for direct action through structured preparation:

• Organize civil disobedience training sessions including practice for responding to simulated police attacks.
• Recruit geographically diverse spokespeople for media coverage.
• Deploy multiple affinity groups with distinct costumed plans to block traffic and entrances.

Parallel Track and Protease Inhibitors

Jim Eigo developed the parallel track proposal to provide experimental therapies to patients simultaneously while controlled clinical trials proceeded. Following a meeting with Dr. Anthony Fauci at Columbia University on July 7, 1989, Bristol-Myers made ddI available through an emergency program on July 13. Mark Harrington exposed that 80 percent of the $90 million 1990 ACTG budget corralled trial participants into AZT-centric studies, while only 17 percent enrolled in studies for opportunistic infections out of a $1 billion cumulative federal commitment. Activists subsequently launched the Countdown 18 Months initiative against Burroughs Wellcome, which enjoyed a 26 percent pretax profit rise due to AZT. You can target institutional delays using structured oversight:

• List promising drugs for each opportunistic infection using a three-ring notebook.
• Identify the pharmaceutical companies most likely to push candidate drugs forward.
• Give companies an eighteen-month deadline to evaluate drugs for treating and preventing opportunistic infections.
• Organize a firestorm of protest if companies fail to meet the deadline.

Marty Delaney of Project Inform organized secret multi-city human trials for Compound Q led by physicians like Dr. Vera Byers, Dr. Alan Levin, and Dr. Barbara Starrett. Dr. Barbara Starrett converted a basement room at Judson Memorial Church in Greenwich Village into an underground clinic where patients received Compound Q infusions. You can maintain ethical standards during underground interventions by following rigorous safety protocols:

• Explain risks and potential side effects using an informed consent form.
• Have a third party witness the consent process.
• Videotape the entire consent process to document patient desires.
• Have the patient officially request and take possession of the medication bag before handing it to the physician for administration.

Combination antiretroviral therapy later produced the Lazarus effect by keeping viral loads under detectable levels in 90 percent of subsample patients for two full years and cutting deaths in half during an Abbott study. When Merck faced supply bottlenecks for Crixivan, Bill Bahlman and Jules Levin helped establish a parallel track lottery where Ernst and Young randomly selected 1,100 critically ill patients from 12,000 submissions submitted by doctors for individuals with under 50 CD4 cells. You can secure access to scarce treatments by establishing transparent distribution channels:

• Identify patients with extremely low CD4 counts under fifty via a simple black-and-white brochure.
• Set up an 800 number for people seeking registration forms.
• Have doctors sign the registration forms.
• Send patient identifying numbers to the accounting firm for random computerized selection.

10 Key Ideas

1. Mainstream institutions and media outlets minimized anti-gay violence while a lethal epidemic emerged among homosexual men in Manhattan and San Francisco, where one in five patients was already dead out of forty-one diagnosed cases.
2. Dr. Joseph Sonnabend and other researchers debated competing models of immune collapse, tracing early clusters of opportunistic infections back to a broader immune system breakdown driven by multiple venereal infections.
3. Michael Callen and Richard Berkowitz pioneered safe sex practices by publishing How to Have Sex in an Epidemic to advocate fluid-free intimacy and sobriety for disease prevention.
4. Activists and doctors formed underground buyers clubs like the PWA Health Group to manufacture and distribute unapproved alternative treatments such as AL721 and dextran sulfate when pharmaceutical companies and regulators refused access.
5. Larry Kramer mobilized the community to form ACT UP, organizing disruptive demonstrations and human blockades that forced institutional and corporate accountability.
6. Iris Long and the Treatment + Data Committee mastered regulatory science to challenge corrupt hierarchies and reform clinical trial protocols.
7. Jim Eigo developed the parallel track proposal, which Dr. Anthony Fauci and federal regulators adopted to provide experimental therapies to patients simultaneously while controlled clinical trials proceeded.
8. Marty Delaney and underground physicians organized secret multi-city human trials for alternative treatments like Compound Q while activists forced pharmaceutical companies to evaluate drugs for opportunistic infections.
9. Combination antiretroviral therapy and protease inhibitors like Crixivan produced the Lazarus effect by keeping viral loads under detectable levels and cutting deaths in half.
10. Patients secured access to scarce treatments by establishing transparent distribution channels, parallel track lotteries, and random computerized selections managed by accounting firms.