Community in a Time of Crisis
Yale, New Haven, and HIV/AIDS, 1981-1996
On June 5, 1981, the Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report published a note about a surprising incidence of pneumocystis carinii pneumonia, which had previously been a rare disease, in several young, gay men. Though the virus that made the men vulnerable to this infection had likely been circulating for years, the report heralded the first medical attention to what would soon come to be known as acquired immunodeficiency syndrome, or AIDS.
While narratives of the early AIDS crisis tend to focus on white, gay men living in New York, San Francisco, and Los Angeles, people of color and people who used intravenous drugs were just as much at the center of the epidemic. In New Haven, urban renewal policies, aggressive policing and surveillance tactics, and de facto segregation all isolated communities of color and limited their access to health care, housing, and well-paying jobs. This led HIV/AIDS to disproportionately impact Black and Latinx people here. In the first years of the epidemic, clinicians and researchers in the city were particularly preoccupied with the emergence of HIV/AIDS among Black and Latinx people who used IV drugs, as well as their children.
The revelation that human immunodeficiency virus (HIV), the virus that caused AIDS, was quickly spreading through mostly marginalized communities across the nation did not spark a coordinated care response. While some hospitals created AIDS wards early on, the federal government refused to acknowledge the growing crisis, and people with AIDS faced not only a disease with no cure but stigma and discrimination as well. With a groundswell of activism at a national scale pushing back against the widespread failure to address HIV/AIDS, members of the Yale and broader New Haven communities took it upon themselves to build HIV/AIDS care and research infrastructure at the local level.
Community and Caregiving
In 1983, a small group led by Yale researcher Alvin Novick, MD, and recent Yale School of Public Health (YSPH) graduate William Sabella gathered in the back of Partners Café, a local gay bar. Together, they sketched plans for a new organization: AIDS Project New Haven (APNH). Fueled by outrage at the lack of attention to the disease decimating their community, APNH became a central hub of AIDS care and advocacy in the city. Novick himself became a beloved mentor not only to those involved in AIDS activism, but also to medical practitioners and researchers in New Haven. APNH developed programs like Caring Cuisine to support people with AIDS and their families, plastered condom ads on city buses, and became vocal participants guiding the work of the Mayor’s Task Force on AIDS.
APNH’s work was rooted in New Haven’s white, gay community, and over time, more organizations emerged to support other groups that had been marginalized and overlooked. Elsie Cofield, a retired teacher and wife of Rev. Dr. Curtis Cofield, founded the AIDS Interfaith Network in 1987. The Cofields’ extensive ministry had exposed them to the challenges of Black New Haven residents with AIDS, many of whom struggled to access social support. At the same time, local Puerto Rican residents rallied around Hispanos Unidos Contra el SIDA, which offered Spanish-language outreach and education, as well as resources for people using intravenous drugs. Hispanos Unidos’ close connections to this community eventually helped pave the way for the success of the Needle Exchange Program.
Though Connecticut was home to the nation’s first hospice, patients with AIDS were largely ostracized, and rarely granted access to existing palliative care institutions. Catherine Kennedy, a 1986 graduate of Yale School of Management (YSOM) and active volunteer with APNH, sought to remedy this situation. Her experience in health insurance and public policy led her to explore different possibilities, and ultimately to acquire a full nursing home license for an entirely new kind of facility. After almost a decade of preparation, Leeway opened the door for its first patients in 1995, creating a site not only for palliative care, but also for skilled nursing care tailored entirely to people with AIDS.
In the early years of the AIDS crisis, it was illegal to buy or possess syringes without a prescription. Without a source of clean needles, people who used IV drugs often shared their syringes. Over the course of the 1980s, New Haven became home to a bold and innovative program that cut HIV transmission rates within the city by tracking the circulation of used syringes and providing clean ones. Initially an informal and illegal initiative that faced tremendous backlash, the program gained legitimacy—and eventually the support of the city itself—as Yale researchers proved its efficacy through a combination of laboratory testing, epidemiological surveys, and mathematical modeling. New Haven’s needle exchange program served as a blueprint for similar programs around the United States.
In 1986, YSPH student Jon Parker launched an underground outreach program: The AIDS Brigade. It provided needle exchange services out of a storefront on York Street and by van around New Haven. Other Yale-affiliated students, researchers, and physicians soon joined in, risking legal and professional consequences to ensure access to clean needles.
In 1990, a coalition of physicians, public health experts, policy makers, and other advocates convinced the Connecticut legislature to conduct a trial run of a formal needle exchange program. The research team had one year and $25,000 to prove that the program reduced HIV transmission in New Haven. This was the first government money allocated for a needle exchange program in the United States.
Because the diagnosis of AIDS could lead people to be harassed, outed, or fired from their jobs (and because there was no treatment), researchers found it unethical to test vulnerable individuals to see if the needle exchange was working. To solve that problem, YSOM professor Edward H. Kaplan, PhD, developed the idea of testing the needles themselves for the presence of HIV, and Yale School of Medicine (YSM) pharmacologist and epidemiologist Robert Heimer, PhD, developed a way to use polymerase chain reaction technology to do so. This method both preserved the anonymity of those who participated in the exchange and allowed researchers to track the number of HIV-containing needles circulating throughout the city—a number that decreased the longer the program was in place.
The needle exchange program benefited from an unlikely collaboration across disciplines. Kaplan used his expertise in mathematical modeling for operations management to demonstrate that the needle exchange program cut the HIV infection rate among its clients by one-third.
The success of New Haven’s program paved the way for exchanges in cities around the country. In late 1991, New York Mayor David Dinkins, for example, reversed his stance on needle exchanges as a result of the Yale study. Connecticut launched several more programs around the state and legalized the possession and over-the-counter sale of syringes.
Though known colloquially as the “Gay Ivy” since 1987, Yale was slow to recognize the impact of HIV/AIDS on campus. The student community at Yale, especially undergraduates, worked throughout the 1980s and 1990s to hold the university accountable. Queer student organizations fought for access to adequate health care, provided peer education and support, and demanded that Yale address the epidemic on campus.
Throughout the 1980s and 1990s, the Yale Gay and Lesbian Co-Op held rallies and dances on Cross Campus to raise awareness and fight homophobia. Safer sex workshops proliferated on campus as student organizations took it upon themselves to educate fellow undergraduates about HIV/AIDS prevention. Posters such as these visibly affirmed queer desire at Yale at a moment when popular and scientific discourse often blamed the sexual culture of gay men and other men who had sex with men for the epidemic.
The Yale Lesbian and Gay Studies Center’s second annual conference, held in 1989, turned out to be a flashpoint for AIDS activism on campus. Yale Police arrested conference speaker Bill Dobbs, a New York-based lawyer and member of the prominent AIDS activist group ACT UP, for hanging posters described as “obscene” inside Yale Law School. New Haven police subsequently arrested several members of the Gay and Lesbian Co-Op who challenged Dobbs’ arrest. Protests erupted when Yale President Benno Schmidt refused to comment on allegations of homophobic police brutality. The posters in question contained erotic illustrations and the words “Sex is,” and “Just sex,” and had been created by the San Francisco guerilla art collective Boys with Arms Akimbo in the wake of a federal ban on AIDS education.
AIDS in the Clinic
In the months following the infamous CDC report, unusual pathology results from Yale New Haven Hospital’s (YNHH) laboratories made it clear that New Haven would not remain unscathed. In 1983, the Section of Clinical Immunology established a role for a single nurse practitioner to serve as an AIDS coordinator with broad responsibilities, including managing physicians’ meetings and clinical services for people with AIDS at the hospital while also providing direct nursing care for people with AIDS at the immunology clinic.
For the first few years of the epidemic, this single AIDS Coordinator attempted to support both the patients and the health care providers connected to the disease. In 1985, Leetha (Fraulino) Filderman, APRN, assumed that role, and under her fierce and protective leadership, the AIDS Care Program began to take shape. She struggled to staff the overflowing outpatient AIDS clinic, which was not a required rotation for resident physicians at YNHH. Many health care providers refused to care for people with AIDS, and at times, the stigma faced by those patients extended to the doctors and nurses who devoted themselves to working with people with AIDS. After several months, pediatric resident Warren Andiman, MD, became the first physician to take on a formal role at the clinic, even though the vast majority of clinic patients were adults. They were also joined by social worker June Holmes, MSW, who served as a crucial link between the program and the city of New Haven. This collaborative approach, which was championed by YNHH Chief of Staff John Fenn, MD, became a defining feature of AIDS work at Yale.
In 1991, YSM recruited Gerald Friedland, MD, to join the faculty. He received funding for the creation of the first AIDS fellowship in the nation, which radically altered the landscape of HIV/AIDS research and clinical care at YSM. Yale developed strong links between a dedicated inpatient AIDS ward (now called the Donaldson Ward), the outpatient Nathan Smith Clinic, and the mobile health care van, emphasizing the importance of continuity of care. In addition, Frederick Altice, MD, began the groundbreaking HIV in Prisons Program, and the broader research program continued to expand as Yale became a National Institutes of Health (NIH) Adult AIDS Clinical Trial Unit, with a focus on recruiting diverse populations for drug trials.
The AIDS Care Program also built upon the existing strengths of community organizations. In the early 1990s, a Yale study revealed that people with AIDS had unnecessarily long hospital stays, caused by the limitations of existing outpatient services. Rather than duplicating efforts, the AIDS Care Program mobilized its resources to expand the highly successful programs offered by such organizations as APNH, AIN, and Hispanos Unidos, which were already active across the city. In 1997, this innovative collaboration was honored with an American Hospital Association NOVA award.
By the end of the 1990s, the clinical experience of HIV/AIDS was transformed. The development of powerful antiretroviral treatment regimens transformed the once-fatal disease into a chronic illness, and pressure from activists made those regimens more widely accessible and propelled further scientific research. Skillful public health messaging increased awareness of HIV/AIDS and understanding of its modes of transmission, which helped lessen the stigma and discrimination associated with diagnosis.
These changes had profound impacts for people living with HIV/AIDS in New Haven. After groundbreaking research conducted by Warren Andiman, MD, throughout the early 1990s demonstrated the efficacy of the antiretroviral drug AZT in preventing mother-to-child transmission of HIV, not a single such case has been documented in New Haven since 1996. Though the Pediatric AIDS Clinic still devotes itself to the care of children and teenagers with HIV/AIDS, there are fewer patients each year.
The Needle Exchange Program lives on through Yale’s Community Health Van. Today, its syringe services program offers clean needles as well as fentanyl test strips and naloxone, continuing the program’s legacy of harm reduction. In response to the COVID-19 pandemic, the van also began to provide postpartum care and distribute personal protective equipment.
Nonetheless, the urgency of HIV/AIDS remains. In 2018, there were 10,574 people living with HIV in the state of Connecticut. Of those, 258 were recently diagnosed. HIV/AIDS requires continued commitment, not merely to treatment and research, but also to the principles of harm reduction, and racial and economic justice