In December 1989 Sean Strub sat nervously in a pew near the front of St. Patrick’s Cathedral in New York City. He quietly listened to the chants of 4,500 angry people outside as they yelled and waved signs that read: “Condoms, not Coffins” and “Papal Bull.” The AIDS Coalition to Unleash Power (ACT UP) was protesting Cardinal O’Conner’s assault on safe sex, the gay lifestyle, and reproductive rights.¹ Sean was not in the cathedral to worship. Instead, at the designated moment he walked up to accept communion and conduct his act of protest while other ACT UP members rose up on pews and shouted: “O’Conner, you’re killing us!” The New York police arrested 111 protesters that day.² Sean managed to avoid arrest. Looking back, he remembered that he was “in a state that feels like grace, certain that if I am to die of AIDS, I will die as a fighter, not a victim.”³

Years before, in 1976, Sean first arrived in Washington D.C., a closeted seventeen-year-old from Iowa determined to make his mark on the world. His earlier involvement in Iowa politics connected him to a job running the U.S. Senate elevator in the hallowed halls of the U.S. legislature. Within a year, he was promoted to senate page and invited to attend the 1976 Democratic National Convention in New York City. The experience changed his life. He was drawn to the electricity and openness of New York City. Gay men casually held hands on public streets, something he had never seen before. He vowed to move to the city as soon as possible. That chance came in 1978 when he knew someone that needed a roommate in Greenwich Village. Without hesitation, Sean packed and left for New York City.⁴

Shortly after his arrival, Sean unwittingly came across a local protest held in honor of recently slain Harvey Milk near the Stonewall Inn. He recalled this as his “first exposure to a group of angry gay people.” Stating that “[t]he people demanding justice were brave enough to put their bodies on the line. I was not.” Though Sean did not immediately participate in the politics of the gay rights movement, he did immerse himself in the gay sexual liberation movement. The gay men participating in the sexual revolution cruised in leather bars, back rooms of clubs and bathhouses. The bathhouses were far and away the most popular places to hook up. In bathhouses, men would walk around with only a towel around their waists while cruising through multiple partners on any given night.⁵ Even as their sexual revolution was in full swing, the gay community knew very little about sexual health. Only a decade prior, homosexuality was declassified as a mental disorder, which led to the explosion in the community’s numbers. Yet, at the same time, many doctors still clung to the idea that it required professional intervention to cure, and were not willing or able to advise gay men about sexual health. This combination created the perfect environment for a sexually transmitted disease to spread rapidly.⁶ And, in fact, that is exactly what happened just as young Sean was following his dreams into New York City.

Just three years after Sean made it to New York, on June 5, 1981, the U.S. Center for Disease Control and Prevention published a Morbidity and Mortality Weekly Report stating: “In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed pneumocystis carinii pneumonia at three different Los Angeles hospitals. Two of the patients died.” Unbeknownst to everyone, this was the first hint of HIV/AIDS, a disease that would ravage the gay community.⁷

Dr. Michael Gottlieb, an assistant professor specializing in immunology at the University of California Los Angeles (UCLA) was the lead author of the CDC report. In early 1981, Dr. Gottlieb was asking around for interesting “teaching cases” when he came across a young gay man with “unexplained fevers, dramatic weight loss, a severely damaged immune system and a mouth full of thrush, or Candidiasis.” This type of thrush was usually only seen in patients with a defect in one particular component of the immune system, the T-lymphocytes (“T-Cells”). The patient, without a definite diagnosis, was released. A few weeks later he returned and was diagnosed with Pneumocystis carinii, a rare but well-known cause of pneumonia also found in people with immune deficiency. In the following weeks, Dr. Gottlieb learned of two other homosexual patients suffering from all the same symptoms. They both also had Pneumocystis carinii pneumonia (PCP) and cytomegalovirus (CMV).⁸  Cytomegalovirus is a common herpes-related virus that causes cold sores. Cytomegalovirus also results in rapid organ failure and blindness. Additionally, these last two patients were diagnosed with Kaposi sarcoma, a blood disease that causes purple, red, or brown tumors to appear on the skin. As with the other diagnoses, a damaged immune system led to Kaposi sarcoma.⁹

Dr. Gotleib shared his findings with the head of the CDC’s Epidemic Control Office in Los Angeles. He informed the CDC that he thought there was a new disease infecting gay men. The head of the local CDC office quickly responded by handing Gottlieb a report that had come across his desk about another patient in Santa Monica with the same symptoms. Soon after, Dr. Gotleib submitted a brief article to the CDC’s MMWR. His purpose was twofold: to alert public health officials, and also stake his claim as the man who discovered the new disease.¹⁰

Across the country, Dr. Alvin Friedman-Kien, a well-established dermatologist and virologist at NYU Medical Center, was examining a gay man who suffered from swollen lymph nodes, fever, weight loss, and an enlarged spleen. The man complained to Dr. Friedman-Kien that nobody would look at the rash on his feet. Upon examination, Dr. Friedman-Kien noticed faint purplish brown bruises on his feet, which a biopsy shockingly revealed to be Kaposi sarcoma. In quick succession, he saw three more patients with similar symptoms, all of whom tested positive for Kaposi sarcoma. A dermatologist could easily go their entire career without seeing one case of Kaposi sarcoma, and he had several cases in quick succession. Alarmed, he immediately called the CDC to report the situation and learned that there were twenty other cases in NYC alone. Dr. Friedman-Kien’s next call was to a colleague, Marcus Conant, a dermatologist in San Francisco who alerted him to six more cases. In a matter of weeks, he published in the Morbidity and Mortality Weekly Report about the twenty-six gay men with Kaposi Sarcoma.¹¹

This report did what Dr. Gotleib’s failed to do, it garnered the attention of the media. The New York Times, the Washington Press, and many smaller papers that circulated in gay communities published stories about the strange new disease affecting gay men. ¹² By October 1981, the Center for Disease Control declared the new disease to be an epidemic. A year after Dr. Friedman-Kien’s report was published the disease was named the Acquired Immune Deficiency Syndrome, also known as AIDS. AIDS is the most advanced stage of HIV infection. When a person contracts HIV it attacks their infection-fighting CD4 cells, which make it difficult for the body to fight infections. This gradually destroys the immune system and without treatment, advances to AIDS.¹³

A few years prior to the disease breaking nationally, in early 1979, Sean was experiencing painful discharge. He went to one of the only gay clinics he knew of in the city. After being bombarded with questions, Sean was diagnosed with Hepatitis B, given a prescription, and sent on his way with instructions not to engage in sexual activity for ten days. Still, Sean continued to visit the bathhouses and became more entrenched in the sexual awakening occurring throughout the gay community. He was comforted by the secret nature of the bathhouses, and his ability to explore a side of himself he still publicly denied. Raised as a Catholic, Sean struggled with the internal shame of being gay.¹⁴

In late 1979, Sean finally stopped distancing himself from the gay political activism he so frequently dismissed. As he was moving into a new apartment, he came across his first gay pride march, the first step towards viewing other gay people as an “us” rather than an alienating “them.” He became more involved in gay activism and began attending protests.¹⁵ His political activism and social life became intertwined and he started frequenting gay bars along Fifth Avenue where the gay political elite hung out. His involvement in activism was something he felt passionate about, though it did not help lessen his own shame regarding his sexuality. When the Democratic National Convention came back to New York City in 1980, Sean recalled how the last time he attended the DNC in 1976 he was too closeted to even visit a gay bar.¹⁶  He was evolving. Sean even worked to persuade members of the house to co-sponsor the Equality Act of 1974, at a time when most politicians felt that supporting gay rights was a political death sentence. ¹⁷

That same year, Sean found himself admitted to Memorial Sloan-Kettering Cancer Center with swollen lymph nodes, in addition to hepatitis B. Due to constant exhaustion, he also spent more time in bed than out of it. The doctors were unable to pinpoint a diagnosis but assumed it to be a kind of lymphoma related to his previous Hepatitis diagnosis. His health improved, and he was discharged.¹⁸ A few years after his initial health scare, on May 18, 1981 (prior to the June 1981 CDC report), Sean was intrigued by an article in a gay biweekly paper, New York Native, regarding the death of a “handful of gay men from a rare form of pneumonia.” Later the Native ran a second, longer piece on the mysterious new illness, this time including a list of symptoms. Sean read through each symptom. The first was weight loss, he knew he had lost weight, but chalked it up to his fast-paced lifestyle. The second, night sweats, made him a little uneasy, but the third, swollen lymph glands, especially troubled him. Yet, none of the doctors he had seen to that point thought he had “gay cancer” as it was called at the time.¹⁹

From that point on, the Native reported with great frequency on the new disease and the sexual histories of those afflicted with it. At the same time, the obituary page became and remained one of the largest sections in the biweekly paper. Still, Sean continued to dismiss his uneasiness, decided to trust his doctors, and figured there was no way he could have the newly named AIDS. In 1982, the news that the disease was transmitted sexually came out. And, just a year later, Joe McDonald, New York’s first gay model died of AIDS. This hit close to home for Sean. Sean had regular sex with his roommate Tito, who also had sex with Joe McDonald. For the first time, there was a clear link between him and the disease. By 1984, he began to worry over every cough, cold, mosquito bite, or bruise. He was especially fearful of PCP and Kaposi’s sarcoma, the two leading killers of people with AIDS.²⁰

As reflected in the growing obituary section, Sean also began to lose people around him. The first person to pass was his close friend Jim. Later recounting his last visit with Jim, Sean recalled that Jim was making up the couch for him to sleep on: “I was hurt because we had always slept in the same bed and I asked why we couldn’t sleep together.” Jim’s reply was “I assumed you wouldn’t want to because of this” gesturing towards his gaunt KS-covered face. “I told him that I would not get it by sleeping in the same bed and so we snuggled under the covers like we used to, that is when I felt tears on his cheek.” “I was afraid I was hurting him, but it was because nobody would touch him anymore, nobody would even shake his hand. He missed feeling the touch of someone.” Months later Jim died.²¹ He was one of many people Sean lost during the epidemic.

In early 1985, Sean started a political survey research firm called Strub/Collins. Within the first two years, AIDS efforts became a large part of the business. He also volunteered for the GMHC to create fundraising mailers and to solicit donations. GMHC was impressed by his work and hired his firm to print and mail fundraising letters that used people afflicted with AIDS to appeal to the emotional side of potential donors. Finding a printer was tough. More than once Sean heard the response “we don’t print pornography.” When they hired a shop on Long Island to fold, insert, seal, and mail the letters, the owner called to report “our workers won’t touch the letters because they are afraid of getting AIDS.”²²

That summer Sean met Micheal Misove at a local gay bar called Uncle Charlie’s Downtown. The pair headed to an all-night diner where they talked for hours, with the conversation eventually turning to AIDS. Michael declared he had no interest in ever taking the HIV test. Sean could tell Michael had swollen lymph glands just as he did. In the following months, their relationship became more serious, as did their collective rage at the rising death toll. This rage was felt by so many in the gay community and fueled the rise of LGBT and AIDS activism.²³

The Saturday after Labor Day in 1985, he recalls awakening in terrible pain “with painful sores along the entire right side of my torso.” He was rushed to a doctor, who informed Sean he had shingles caused by a suppressed immune system. The doctor recommended a test to see if he had AIDS. Years after he first recognized himself in the list of symptoms, Sean finally agreed to take the test. Two weeks later the doctor informed him that he tested positive for HIV and was experiencing AIDS-related conditions. Sean tried asking questions, but he couldn’t make his voice work. The doctor tearfully told him, “Sean, these days you can have at least two good years left.” Sean told his partner, Michael, who admitted he too likely had HIV, but still did not want the test. Michael vowed to be there for Sean and kept that vow for the rest of his own life.²⁴

Early in the epidemic, those afflicted with HIV/AIDS faced one challenge after another. The government not only failed to respond but heartbreakingly, they also refused to acknowledge the disease. The Reagan administration spread misinformation regarding the AIDS/HIV virus that contributed to the government’s lack of response.²⁵ Reagan’s advisor, Pat Buchanan, declared, “the poor homosexuals – they have declared war upon nature, and now nature is exacting an awful retribution.”²⁶ Reverend Jerry Falwell, then leader of the new political action group Moral Majority, stated that “AIDS is the wrath of God upon homosexuals.” It was not only the government who was responding with misinformation and fanning the flames of the fire, but doctors also contributed to the problem. Even though there was a consensus in the medical community that HIV could not be spread through casual contact, after an infant was found HIV positive, Dr. Anthony Fauci declared that there was the possibility of spreading HIV through routine familial contact. After Dr. Fauci’s statement, the headline in The New York Times the next day read: “Mere Contact May Spread AIDS.” This false narrative contributed to the stigmatization of those who were living with HIV. Families were distancing themselves from their gay family members. Funeral homes either refused to pick up an HIV positive body from the hospital or they charged an exorbitant fee.²⁷ A 1985 study showed that nearly 47% of people would avoid someone who tested positive for HIV/AIDS. ²⁸

San Francisco and New York were the first urban centers in which AIDs sprouted. San Francisco took action, but other large cities such as Houston, Boston, Chicago, and Los Angeles failed to make even the smallest effort to combat the spread of the disease.²⁹ This lack of government action forced the nonprofit community-based programs to step up. In 1982, two gay men from L.A., Michael Callen and Richard Berkowitz, took matters into their own hands and wrote How to Have Sex in an Epidemic, which pushed an idea that even the medical community had not endorsed. The notion that condoms could be used during homosexual encounters to help stop the spread of AIDS.³⁰

Many laws were rushed through that contributed to the stigma of the gay community. In particular, on June 30, 1986, the U.S. Supreme Court issued a landmark ruling in Bowers v. Hardwick upholding the sodomy laws in the state of Georgia. The case arose when Michael Hardwick was observed engaging in consensual sodomy in his bedroom when an officer kicked in his door. He was charged under a Georgia statute that criminalized sodomy.³¹ In the majority opinion, Chief Justice Burger called homosexual sex an “infamous crime against nature” and “worse than rape.” Around that time, Proposition 64 in California proposed to quarantine people with AIDS. Luckily it was defeated by the burgeoning activist community.³²

Amid the misinformation and hate, the truly horrific problem was the inaction of the government in finding ways to combat the disease or in clearing the path for doctors engaged in finding cures or medications. One of the deadliest issues faced by the AIDS community was the lack of available drugs. AZT (Zidovudine), the first anti-HIV drug, was released by the FDA in 1987, six years after the start of the epidemic and thousands of deaths later.³³ This drug was rushed out to the AIDS community and welcomed by many with open arms. It would later prove to do more harm than good. It did help people who were in the final stages of the disease with only a few months to live, but taken any longer than that, the AIDS virus developed resistance. This caused it to mutate to get past the AZT barrier, which would overwhelm the already immune-defenseless body and kill the patient.³⁴ Doctors pushed the FDA to begin testing on already approved drugs that were showing success rates in HIV patients. One such drug was Bactrin, which was working to prevent PCP in immune-compromised patients. The FDA refused to start the testing, and instead approved Pentamidine, which ended up being less effective than Bactrin. Between the FDA’s denial and their eventual acceptance of Bactrin, there were 30,534 deaths from AIDS in the U.S.³⁵ The persistent lack of action cost thousands of people their lives.

In late 1985, Sean joined the People with AIDS coalition and soon realized that although he had followed the unfolding of the disease, he had also been asleep to the reality of it. He was determined to contribute. As part of the coalition, Sean began distributing copies of How to Have Sex in an Epidemic. He read medical journals and heard rumors about a compound know as AZT that was showing results in experimental trials. Sean only took AZT for a matter of days before quitting the drug. He would eventually take testosterone replacement when his T-cells plummeted, anti-retroviral drugs and treatments to prevent opportunistic infections, Bactrim to prevent PCP, Biaxin, and sometimes anti-anxiety or sleeping pills to manage the disease.³⁶

His activism elevated and following the decision in Bowers v. Hardwick, he marched with thousands of people all the way to Sixth Avenue where they sat in the street to block traffic. Sean explained, “The [Bowers] decision was like putting a match to dry kindling; we were not as angry as we were scared.” During this time, friends were a precious commodity as so many of those close to him were lost to the disease. He began wandering the hospital hallways at Roosevelt, St. Vincent’s, NYU Medical Center, and other hospitals, visiting with ill friends. Sometimes all you had to do was walk down the hallway scanning the patient names on the doors and would inevitably see someone you knew. His rage about the treatment of the gay community led Sean to ACT UP. Every Monday, Sean attended the ACT UP meetings being held in the rundown redbrick building on West Thirteenth Street.³⁷

By 1987, 40,000 people had died from AIDS. That was the same year ACT UP formed in New York. It was started by Vito Russo and Larry Kramer, a friend of Sean’s. The mission of this group was to carry out daily acts of civil disobedience to bring attention to the AIDS crisis that was largely ignored by the country. They held small-scale protests of films, news stations, and papers that printed misinformation on AIDS.³⁸ They used the symbol of the pink triangle, which when used by Nazi soldiers to identify homosexuals in concentration camps was inverted.  Two of the largest protests that ACT UP organized included the “Stop the church!” protest held at St. Patrick’s Cathedral in New York, and in 1988, after four days of protests in Washington D.C., ACT UP members took over FDA headquarters. According to ACT UP: “AIDS activists are disgusted with the entire federal response to the AIDS Crisis; we are disgusted with the inadequate state and local responses as well. NIH Clinical trials are inaccessible to much of the country. CDC epidemiology has lagged throughout the epidemic and perpetuates the invisibility of many groups affected the disease.”³⁹

They also had the tag “Drugs into Bodies” because of the FDA’s unwillingness to approve more drugs for those living with HIV/AIDS. This protest was not done blindly. ACT UP organizers had already shown a demonstrated knowledge of the FDA drug approval process. They carefully prepared press kits and presented them to the media beforehand. They demanded the drug approval process be shortened, the end to double-blind placebo trails because they considered giving a placebo to someone with a life-threatening illness unethical, and the inclusion of all groups in HIV trials, including women of color, children, the poor, IV Drug users, hemophiliacs, and gay men. In addition, they demanded that Medicaid must be made to pay for experimental drug therapies.⁴⁰

In 1988, Michael, the first love of Sean’s life, became very ill. Sean was unaware that Michael had been seeing a doctor and knew he was immune-suppressed. A week after Michael’s admission to St. Vincent’s, he lost consciousness. Sean stayed by Michael’s side every second that he could. He would sometimes lay by him and sponge off his head with a cloth when his fever rose. Ten days after Michael was admitted, Sean straightened his covers, kissed him goodnight and went home to get some sleep with plans to return in a few hours. At one in the morning, he was awakened by a phone call that Michael had died. Sean was devastated by Michael’s loss.⁴¹

In the months after, Sean tried to cope with Michael’s death by throwing himself into activism. He organized one of ACT UP’s most controversial demonstrations against Cardinal O’Connor. O’Connor campaigned against condom usage and demanded that church-run hospitals stop discussing safe sex and distributing condoms. He tried to discredit studies and proclaimed, “condoms don’t work.” On December 10, 1989, protesters packed the streets in front of St. Patrick’s Cathedral while Sean and other protesters posed as the faithful inside. Throughout the mass, members of ACT UP would cause various disruptions. Sean’s protest was when he and another member Tom walked up to take communion. Tom said “opposing safe-sex education is murder” while crumbling his communion cracker. Sean said, “May the Lord bless the Man I love, who died a year ago this week” and crumbled his communion cracker as well. Sean was determined to die a fighter, not a victim.⁴²

Since the start of the epidemic, the media coverage of people with AIDs mainly portrayed them as suffering and dying victims with no hope for survival. Sean knew that was not the case. He knew AIDS people who fell in love, pursued careers, opened businesses, raised children, and traveled. In 1994, he used all the money he could scrape together to launch Poz magazine, a glossy lifestyle magazine for people with AIDS. The title was both a play on the horrible news of being HIV positive while also an encouragement to think and act positively. The magazine translated complicated science and factors that affected treatment decision-making for the average consumer. In April 1994, when the first groundbreaking issue of Poz hit the stands, the FDA was still approving HIV medications.⁴³

Later that year he was diagnosed with KS, the scarlet mark of AIDS. As he worked to grow the magazine, his lesions grew as well. They were covering his body and his health was deteriorating. He suffered from breathing problems, incontinence, night sweats soaked the bed. He also had patches of KS growing inside of his lungs.⁴⁴ Luckily, Sean was able to get into a clinical trial for a chemotherapeutic agent. This stabilized his KS and saved his life. Today, Sean continues his activism through POZ Magazine and speaking at AIDS-related events.⁴⁵