Breaking Barriers: Dr. Mary Guinan's Leadership in Early AIDS Research
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Overcoming Stigma: A Commitment to Public Health in the Face of AIDS
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As we observe HIV Awareness Month, we reflect on the contributions made by Dr. Mary Guinan, a past ADM winner, The Countway Library of Medicine Oral History subject, and a woman who played a pivotal role from the beginning of the AIDS crisis. Few diseases have left such an indelible mark, with the AIDS crisis of the 1980s and 1990s claiming millions of lives globally. For those on the front lines, including Dr. Guinan, the memories of immense suffering, loss, and stigma are unforgettable.
Dr. Mary Guinan is no stranger to challenges. Raised as the middle of 5 children in New York City, Guinan’s parents were hardworking Irish Immigrants. Her father died suddenly in 1955, when Guinan was only 16. Her mother, a tenacious and determined woman, urged Guinan, “make something of yourself- you need to be educated so you can stand on your own two feet.” Taking this advice to heart, and embracing the resilience her mother had shown, Guinan worked hard and earned a scholarship to attend a private High School, St. Brendan’s. Maintaining her grades so she could attend college for free, she continued her education at Hunter College of the City University of New York, graduating in 1961 with a degree in Chemistry.
For many years thereafter, Guinan would encounter seemingly insurmountable roadblocks as a woman scientist. Undeterred, she continued to pursue a unique, non-traditional path and eventually attended the University of Texas Medical Branch in Galveston, studying aviation space medicine in proximity to NASA, and earning a Ph.D. in physiology. She went on to graduate from the Johns Hopkins University School of Medicine in 1972, completing her residency at Pennsylvania State University’s Hershey Medical Center.
“We need volunteers for the Smallpox Eradication Program, but we are not accepting women.”
After completing her residency, Dr. Guinan learned about the WHO’s ambitious Smallpox Eradication Program and applied to the Center for Disease Control’s (CDC) Epidemic Intelligence Service (EIS) which would lead U.S. efforts. She was accepted to the EIS program as the only woman in a class of 39 and trained for two years in detecting and controlling epidemics. However, her attempts to join the EIS’s specific Smallpox Eradication Program were denied due to its policy of excluding women.
Through unwavering determination, Dr. Guinan persisted in advocating for change, ultimately securing her acceptance into the program and being sent to India to contribute to the mission. There, she encountered numerous challenges, including combating the stigma and social exclusion faced by smallpox sufferers. By implementing a monetary reward system to locate cases and using ring vaccination strategies, her team was able to eradicate smallpox in the region. These efforts, along with the work of thousands of global health workers, culminated in the complete eradication of smallpox in 1977, the first and only disease to be eradicated worldwide.
“I was shocked.”
It was at this time Dr. Guinan began an infectious disease fellowship at the University of Utah and her career took another unexpected turn. In this role she was asked to present her research on oral herpes treatment at an Infectious Diseases Society of America symposium. Afterward, she eagerly discussed her findings with the press. Later that evening, she turned on the TV to see if her segment was on the National news.
“It was, and it was Dan Rather on CBS News. Indeed, they were covering the herpes panel interview. Then I see myself there on the screen, and there’s a voiceover that says, ‘Dr. Mary Guinan, expert in genital herpes infection.’ I was shocked. I was standing there, and I’m pointing to my lip, and they’re saying I’m an expert in genital herpes infection.”
After the airing she was inundated with calls and requests for help, which led Dr. Guinan to look up the literature on women and herpes infections. She could not find anything at all. This led to a pivotal realization: women with genital herpes had access to minimal resources and information, as existing literature and data on the condition in women were almost virtually nonexistent.
“...if a woman had sexually transmitted diseases, she was considered to be a bad person, and it was something people didn’t want to touch. ...There were no data, very, very few data on women and any sexually transmitted disease. So, I decided that I was going to try and change that, and I did this study on genital herpes in women. It was published in the New England Journal of Medicine...”
Dr. Guinan gained national attention for her work, earning the nickname Dr. Herpes for her candid and scientifically grounded approach to a disease whose victims were surrounded by significant social prejudice.
“There was such an outpouring of hatred against gays and those who had AIDS.”
In 1978, the CDC brought Dr. Guinan back to its Sexually Transmitted Diseases (STD) division as a herpes expert. This role placed her at the epicenter of the tumultuous early days of the AIDS epidemic.
In 1980 the CDC started receiving reports of a new mysterious illness. Dr. Michael Gottlieb, a first-year assistant professor of Immunology at UCLA, sent the CDC a manuscript relaying the stories of 5 affected men and their symptoms. This was the first clinical description of what would come to be known as AIDS (acquired immunodeficiency syndrome), and the start of the AIDS epidemic. Since all the men discussed in the article also had a herpes infection, Dr. Guinan was asked to shepherd this manuscript through the system for publication in the CDC’s Morbidity and Mortality Weekly Report (MMWR).
The report sparked an overwhelming response. The CDC was besieged with reports of patients with similar symptoms. Despite having no additional funding for its implementation, the CDC quickly formed a task force, with Dr. Guinan in the lead. Through the numerous studies by the task force it was shown there was:
“...a statistically significant difference between the number of sex partners that the patients with AIDS had compared to those that didn’t have AIDS. These are both gay men ... So, it was clear to us that the disease could be sexually transmitted...within two years we knew it could be transmitted through intravenous drug use, through a needle stick, through blood and blood products, and hit the hemophilia community, and it could be mother-to-child transmission and also breast-milk transmission.”
Recognizing the importance of this work, leaders at the CDC siphoned funding from the other STD programs to pursue AIDS research. Despite all of these efforts, the lack of adequate funding, caused by President Reagan’s austerity measures in Washington, stunted any significant progress.
The overwhelming vocal public opinion for AIDS echoed opinions on herpes: “People with this disease are not deserving” “It is a punishment from God” and “Public money should not be spent to research a cure.” It wasn’t until May 1983 that Congress approved the first dedicated funding for AIDS research and treatment. Although this designated funding was a welcome change, it was not sufficient to meet the challenge.
“There was nothing we could do for them.”
Dr. Guinan remained steadfast in her efforts to deepen her understanding of the disease, persistently advancing research to uncover more about its complexities. She worked in a clinic one day per week as part of her research, recalling the lives destroyed by this affliction:
“...they’d come in, and their families had disowned them, their partners had left them, they’d lost their jobs. Patients with Kaposi sarcoma, you could see the lesions on them. You couldn’t go near them. Nobody wanted to touch you. And these are the patients, and there’s nothing we could do for them. And they were developing all these diseases and infections and painful, horrible things, wasting syndrome, where they would look like skeletons, practically, because they couldn’t eat. So this painful time, we could do very little for them...For years this went on, everyone died, all of the patients died...”
Although AIDS was a devastating disease, its impact was magnified by widespread silence and the reluctance to address it openly. Social stigma became a significant barrier, hindering efforts to make progress in treatment and prevention, and delaying the critical support that could have saved countless lives.
“What I saw was totally fear – everybody was afraid and I can tell you that the medical community didn’t want to talk about it. Nobody wanted to be associated with it. The media didn’t want to know about it, they didn’t want to talk about it. So, it was very difficult to try and get information – people were pariahs if they had it or were even near people who had it. Nobody wanted to be diagnosed with this disease, nobody wanted anyone to know they were diagnosed with the disease. Families abandoned their family members who had the disease. It was an unbelievably difficult time.” (Dr. Mary Guinan remembers AIDS discovery [Audio podcast episode]. KNPR's State of Nevada. Retrieved from https://knpr.org/show/knprs-state-of-nevada/2012-12-05/dr-mary-guinan-remembers-aids-discovery )
Within ten years, with AIDS in the pervasive grip of social stigma, devoid of adequate funding, and lacking a coordinated effort, the AIDS virus would go on to claim more American lives than the Vietnam and Korean Wars combined.
“…that’s when the AIDS activists became involved, fortunately, because if they had not, I don’t know what really would have happened with the government. They demanded to be heard. They demanded that tests be done, that they be part of these tests, and that it be given a priority by the National Institutes of Health…”
All the while Dr. Guinan continued to advance our understanding of the disease:
“I published the first study on AIDS in Women in the United States. Before that, people were saying women can’t get it,..and if they get it, well, they were probably prostitutes or were doing something wrong or had drug use. The whole idea that a woman could get AIDS was thought not to be possible.”
“…then all of a sudden, this miracle happened…”
Finally, due to increased research funding, the relentless efforts of AIDS activists, public demand, and the distribution of well-researched information, a drug treatment was eventually developed.
“So, it took almost fourteen years, and in 1995, the treatment, was a cocktail, a mixture of various drugs, was found to be very effective in decreasing the symptoms of AIDS and in lowering the virus load in the blood...and presumably, the patient is not infectious then...Fourteen years we were there without anything, people kept dying, and then all of a sudden, this miracle happened where people were going back to school, back to work, and they were coming to the clinic, and people were happy. It was like you couldn’t believe it.”
Since then, great strides have been made, but more efforts are needed. Dr. Guinan anticipates a day when, much like the eradication of smallpox, HIV/AIDS is completely wiped from the earth:
“We have the ability—and this is the new strategy that the WHO and CDC have announced —they’re going to try to eliminate HIV from the planet by the year 2030, even without the vaccine or a cure.”.
If this goal is achieved, it would mark the second time in history that humans have fully eradicated a devastating disease, and also the second time Dr. Mary Guinan has played an important role in such an achievement.
As we commemorate HIV Awareness Month, we honor the pioneers and researchers who dedicated themselves to unraveling the complexities of the HIV virus, often in the face of immense stigma and societal fear. Their tireless work has been instrumental in shaping prevention strategies, advancing treatments, and providing accurate information to combat misinformation. Their legacy reminds us of the critical importance of continued advocacy, education, and research to ensure a healthier, more informed future for all.
Unless otherwise cited, the information and quotations are taken from the oral history of Mary Guinan. The full oral history is publicly available here as part of the Women in Medicine Legacy Foundation’s exhibit at The Countway Library of Medicine, through our partnership with The Archives for Women in Medicine.
Source materials and for further reading/listening/watching:
Guinan, M., & Peters, A. (2016). Adventures of a female medical detective: In pursuit of smallpox and AIDS. Johns Hopkins University Press.
Centers for Disease Control and Prevention. (n.d.). The story of AIDS: CDC's role in the history of the HIV/AIDS epidemic. Retrieved November 21, 2024, from https://www.cdc.gov/museum/online/story-of-cdc/aids/index.html
Centers for Disease Control and Prevention. (1981, June 5). Pneumocystis pneumonia – Los Angeles. MMWR Weekly, 30(21), 250-252. https://www.cdc.gov/mmwr/preview/mmwrhtml/june_5.htm
HIV.gov. (n.d.). HIV and AIDS timeline. U.S. Department of Health & Human Services. Retrieved November 18, 2024, from https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline#year-1981
Hochschild, J. (Host). (2021, June 16). ACT UP: A history of AIDS/HIV activism [Audio podcast episode]. In Code Switch. NPR. https://www.npr.org/2021/06/16/1007361916/act-up-a-history-of-aids-hiv-activism
McSwegin, Melissa (Interviewer) and Guinan, Mary (Interviewee); Epidemiologist, “GUINAN, MARY,” The Global Health Chronicles, accessed November 21, 2024, https://www.globalhealthchronicles.org/items/show/3539.
National Library of Medicine. (n.d.). Spotlight on HIV/AIDS. Retrieved November 21, 2024, from https://www.profiles.nlm.nih.gov/spotlight/ncaids
Wright, K. (Host). (2024, February 1). Blindspot: 'Women Don’t Get AIDS, They Just Die From It' [Audio podcast episode]. In Blindspot: The Plague in the Shadows. WNYC Studios & The HISTORY® Channel. https://www.npr.org/2024/02/01/1228326077/blindspot-podcast-hiv-aids-kai-wright
UNAIDS. (2016). 2016 United Nations Political Declaration on Ending AIDS. Retrieved from https://www.unaids.org/en/resources/documents/2016/2016-political-declaration-HIV-AIDS
University of Rochester. (2023, May 2). Michael Gottlieb, doctor who discovered AIDS, remembered as a pioneer. University of Rochester. https://www.rochester.edu/newscenter/michael-gottlieb-doctor-who-discovered-aids-529802/