What we've learned about disease in the 40 years since the discovery of HIV/AIDS at UCLA
On June 5, 1981, a cluster of curious cases of Pneumocystis carinii (now P. jirovecii) pneumonia (PCP) in five previously healthy, gay men in Los Angeles was first described in the Morbidity and Mortality Weekly Report, a publication from the U.S. Centers for Disease Control and Prevention.
Forty years after the discovery of HIV/AIDS at UCLA, we at UCLA Health are reflecting on that epidemic as the world inches toward relief from COVID-19.
“No one could possibly have imagined that this (discovery) was the beginning of a global epidemic involving tens of millions of people,” says Michael Gottlieb, MD, an assistant professor of medicine and clinical immunology and the principal investigator on the CDC’s 1981 report.
Though the novel coronavirus has been known to us for just over a year, there are parallels to be found between the path of the COVID-19 pandemic and the history of HIV/AIDS: the race to understand the disease in its infancy, the holes in our health care system and disparities in care, the miraculous breakthroughs in medical science and public health and the continued search for a widespread cure.
Six months prior to the HIV/AIDS discovery, Dr. Gottlieb arrived at UCLA to work on experimental tissue and organ transplantation. While teaching an immunology exercise in the spring of 1981, he asked post-doctoral fellow Howard Schanker, MD, to find a patient with an illness that had immunologic features.
A medicine intern, Robert Wolfe, told Dr. Schanker about a patient admitted to the emergency department with weight loss, fever, candidiasis (also known as thrush), and what appeared to be a severely damaged immune system. Within a week, the 31-year-old man developed Pneumocystis carinii, a rare but well-known cause of pneumonia typically found in immune-deficient patients.
He became the first known patient with what we now call HIV/AIDS.
Not long after, Dr. Gottlieb learned that the late Dr. Joel Weisman, a physician in Sherman Oaks, had patients with similar symptoms as his original patient. “We started to suspect that this was much more common than we initially thought,” Dr. Gottlieb says.
Working with Wayne Shandera, MD, who had become the CDC’s epidemic control officer in Los Angeles, Dr. Gottlieb and five others reported the first five cases to the Centers for Disease Control and Prevention in Atlanta, which led to the report in MMWR.
The same day the report was published, a dermatologist in New York called the CDC to report cases of Kaposi’s Sarcoma (KS), a rare and unusually aggressive cancer which forms masses in the skin, lymph nodes and other organs.
Within days, reports of PCP and KS began to sprout across the nation and by year’s end, 337 reported cases of individuals with severe immune deficiency were reported in the U.S. Of those cases, 130 had died.
Like COVID-19, challenges to understanding and battling HIV/AIDS stemmed from sources such as insufficient technology and both overt and systemic bias against the groups most affected by the disease.
In 1981, there were no diagnostic tests available and no hospital laboratory had the capabilities to determine a patient’s viral load – a test that was not developed until 1995, which became important in detecting HIV/AIDS and other diseases today. Dr. Gottlieb did have access to other state-of-the-art testing equipment at the Center for Interdisciplinary Research in Immunology and Disease at UCLA (CIRID), one of only four such centers in the entire U.S.
It was at CIRID that UCLA researchers including the late John Fahey, MD, an immunologist and emeritus professor in the departments of microbiology, immunology and molecular genetics, uncovered that the patients had severely reduced subsets of CD4 cells (also known as the T helper cells). That meant the immune system was severely impaired and unable to fight off an opportunistic infection, such as pneumocystis and others that cause disease only when the immune system is damaged.
Dr. Fahey used some of his grant from the National Institute of Allergy and Immunologic Diseases (NIAID) to advance a national program, led by Roger Detels, MD, distinguished research professor of epidemiology and infectious diseases and dean emeritus of the UCLA School of Public Health.
Dr. Detels approached Drs. Gottlieb and Fahey with an epidemiologic proposal suggesting a clinical, social and behavioral study on the population that was most at risk – which at the time was gay men.
To gather volunteers for the study, Dr. Detels presented his proposal to the Gay and Lesbian Student Association at UCLA. He knew his request was a risky proposition for potential participants considering the political climate and stigmatization associated both with being gay and with having AIDS, he says.
“I told the volunteers that if they allowed me to take a blood specimen and ask a bunch of questions, I wouldn’t use their names,” Dr. Detels says. “I told them if you call me back in three or four weeks, then I’ll tell you your T-cell level and ratio.”
Later, however, he realized he needed to follow volunteers for several years to determine if there were identifying factors that might contribute to the disease. He asked them if they would be willing to share their names and attend periodic check-ups.
Of the 200 asked, 189 agreed to participate. It was a “reflection of how committed the gay community was to addressing this problem,” he says.
“It took great courage from the guys to say yes,” Dr. Detels says. “There was very little known about how the disease was transmitted and they were seeing their buddies die. They desperately wanted to do something that would help and uncover what was going on.”
He would work on the study alongside the late Janis Giorgi, PhD. A pioneer in HIV/AIDS research, she secured grants from NIAID for her work on cellular immunity in HIV infection.
In 1983, Dr. Gottlieb, Yvonne Bryson, MD and Ronald Mitsuyasu, MD, developed a research and clinical program in HIV, called the AIDS Center, which later formally became the Clinical AIDS Research and Education (CARE) Center.
“We gathered data from the clinics on what diseases we were seeing and their clinical course,” says Dr. Gottlieb. “Dr. Mitsuyasu headed the tissue bank to collect and distribute KS tissue for research.”
The Center provided the resources to apply for a contract from the NIAID to conduct clinical trials and a $10.5 million contract was awarded in 1986 – “the major impetus to the start of AIDS Research at UCLA in addition to the contribution of CIRID,” says Dr. Gottlieb.
In the beginning, however, Dr. Mitsuyasu had to see patients in the basement level of the UCLA hospital, he says. Patients struggled to find the location and there were no windows.
“We ran into a lot of resistance initially, trying to get patients seen in the outpatient setting. There weren't many infectious disease faculty members who had an interest or the time to really see the AIDS patients,” he says.
Additionally, staff worried “about the contagiousness of the patients themselves,” he says. “We had a suspicion that Kaposi’s Sarcoma was caused by some type of an infection, but we didn't know what type of infection, so there was a lot of concern.”
Eventually, the CARE Center became recognized as a separate center. It now runs clinical trials and educates those at risk of or living with HIV/AIDS about prevention and treatment, and its outpatient clinic provides patients with medical care.
“It took basically eight to 10 years to really get things organized,” Dr. Mitsuyasu says. “I did get this strong sense that there were some underlying prejudices here, that people just didn't like the population which were being seen in large numbers.”
However, he says, those suffering from HIV/AIDS were so ill that he felt he had to do something.
“If you talk to anyone that was involved in those days, they'll say the same thing.”
At the beginning of the HIV/AIDS epidemic, the federal response paralleled the early stages of the COVID-19 pandemic, according to Dr. Gottlieb.
People were concerned about the diseases, but “in both instances, we didn't really have leadership from the top,” he says. It would take nearly five years and thousands of deaths before Surgeon General Dr. C. Everett Koop took it upon himself to issue a report on “Acquired Immune Deficiency Syndrome,” which pressed the White House to take action.
The gay community drove the push for a larger response from leaders, Dr. Mitsuyasu says.
“I think a lot of it had to do with the Reagan era and the fact that people just weren't focused on it or they just wanted to shove it to the background and not think too much about it,” he says. “Once we had individuals from all over the country advocating for more attention and more funding for HIV research – I think it was at that point that things really began to happen.”
Comparable to the way Tom Hanks' COVID-19 diagnosis shaped public perception and behavior, the diagnosis of Rock Hudson, a famous actor and one of Dr. Gottlieb’s patients, changed perceptions of HIV/AIDS and garnered support for research into fighting the disease.
“People in the HIV/AIDS world talk about the public perception of the disease before Rock Hudson and then after Rock Hudson and how much it changed once it was disclosed that he had AIDS,” says Dr. Gottlieb. Media reports following Hudson’s death in October of 1985 highlighted how Americans had been traveling to France in search of treatment, putting pressure on the U.S. to finally respond.
Who gets care?
Similar to COVID-19-related disparities, HIV/AIDS-related disparities were, and are, apparent among certain populations, owing to “the lack of information, limited availability of testing and reduced access to clinical trials and new treatments,” according to Judith Currier, MD, division chief for Infectious Diseases and director of the UCLA CARE Center.
Dr. Currier’s early work in the late-'90s focused on sex differences in clinical trials. “There was an initial focus on the prevention of mother-to-child transmission and a little bit less so on the women's health issues,” she says. “There was a gap there.”
She helped to shed light on the unique health impacts for women living with HIV, such as cardiovascular disease, stroke, weight gain and changes in bone density.
Like Dr. Currier, Dr. Bryson, a professor of pediatrics and chief of Pediatric Infectious Diseases at the David Geffen School of Medicine at UCLA and UCLA Mattel Children’s Hospital and director of the Los Angeles Brazil AIDS Consortium, was a key pioneer in advancing the prevention and treatment of HIV/AIDS, including first-of-its-kind research on mother-to-child transmission.
Globally, the HIV/AIDS epidemic is still affecting younger women, says infectious disease fellow Mary Catie Cambou, MD, largely due to unequal cultural, social and economic status: intimate partner violence, inequitable laws, harmful traditional practices and lack of access to treatment and education.
Among all racial and ethnic groups, Black and Latino populations are disproportionately affected by HIV due to reduced access to health care, stigma, lack of awareness of their HIV status, and poverty. A 1986 special report in MMWR found that Black and Latino men accounted for 23% and 14%, respectively, of all AIDS patients. Among women, Black and Latina women were 13.3 and 11.1 times more likely to have AIDS than white women.
Today, new HIV diagnoses show Black and Latino populations are among the most affected.
Treating HIV-positive patients from vulnerable groups often falls “at the intersection of human rights advocacy and medicine,” Dr. Cambou says.
In 2011, during her first year of medical school, she spent the summer in Peru working with Jesse Clark, MD, associate professor-in-residence at the David Geffen School of Medicine in the Division of Infectious Diseases and medical director of the UCLA Vine Street Clinic and program director of the UCLA South American Program in the HIV Prevention Research Program (SAPHIR), to understand the common characteristics of sexual relationships among men who have unprotected anal intercourse with men and transgender women.
Through her work abroad, she learned two things – first, that HIV is not a monolithic pandemic.
“The epidemic is country-specific, with significant geographic variation,” Dr. Cambou says. “A one-size-fits-all approach will not end HIV. Context matters.”
And second, she learned about the importance of de-colonizing global health.
“In my opinion, the most successful global health partnerships center on local voices,” she says, having worked with local groups in Peru and Brazil. “I was struck by how closely Dr. Clark worked with his Peruvian colleagues as a team, rather than as the ‘American expert.’”
The UCLA/Fogarty AIDS Training and Research Program (AITRP), which Dr. Detels helped found for health professionals in developing countries in the late-'80s, teaches PhD students from Southeast Asian and China on conducting research on the evolving HIV-related epidemics in their countries.
Though there is a prevailing narrative that HIV is a “death sentence,” Dr. Cambou says, effective antiretroviral treatments can help patients live well into late age.
“This is a chronic disease that we can manage in the same way that we can manage diabetes or cardiovascular disease.”
Still, the stories she heard from her mentors about the early years of the HIV/AIDS epidemic, “when no one knew anything,” came to mind during the initial panicked stages of the COVID-19 pandemic, she says.
“Infectious disease work really trains you to explore the unknown, so that when you do have these emerging epidemics, you’re prepared.”
Many of the same people who worked on HIV/AIDS in the early years also became involved with COVID-19 research and care, says Dr. Currier. Additionally, the HIV/AIDS infrastructure and committed faculty at UCLA, built steadily over the years, eventually became an unexpected but essential tool to expedite research into the coronavirus, treatment, clinical trials and prevention efforts. When the time came to test the COVID-19 vaccines, outpatient clinics such as the UCLA CARE Center and UCLA Vine Street Clinic were ready for use as sites for COVID-19 vaccine trials.
As the world slowly begins to contemplate life after the COVID-19 pandemic, the work on HIV/AIDS will continue, says Dr. Currier.
“While we made a lot of headway, our work is not done,” she says. “There's a lot that we can do to improve people's lives with this disease – so it's not over yet. We still hope to find a cure for HIV.”
What comes next?
After 40 years, the study led by Dr. Detels is still going strong. There are 2,000 participants, with 700 men from the early years still enrolled in the study. Much of the study staff have remained with Dr. Detels for more than 20 years, he says, and developed close friendships with the study volunteers. Additionally, many of the graduates of the UCLA AITRP Program have gone on to play key roles in the control of both HIV/AIDS and COVID-19 pandemics in their respective countries.
Dr. Gottlieb is an associate clinical professor of medicine and an active practitioner of HIV medicine at APLA Health in Los Angeles, where he also teaches UCLA medical students and Cedars-Sinai medical residents. He is medical adviser to the Elizabeth Taylor AIDS Foundation and to the Global AIDS Interfaith Alliance which provides HIV treatment in Malawi, Africa.
Dr. Mitsuyasu served as director for the UCLA CARE Center for 38 years, and retired in 2020, finishing his research appointment in 2021. The center has grown into a multidisciplinary hub of state-of-the-art medical care, clinical trials and treatment, education and research, and a community of providers, patients and their families.
The leaders in HIV/AIDS research that have dedicated their lives to studying and advancing therapeutics and prevention efforts understand that one feature of studying infectious diseases is that there is always work to be done, says Dr. Cambou.
“I think that a HIV cure and vaccine are really the next frontier,” Dr. Cambou says. “Part of the reason we were able to find such effective vaccines and treatments for COVID-19 so quickly was because of the existing HIV research infrastructure. With the COVID vaccines – specifically the mRNA vaccines – I think that that opens up a new world in terms of the development of an HIV vaccine.
“Even though we can maintain HIV, by treating it like a chronic condition, we still can't cure it at the moment,” she says. “I’m hopeful that in my lifetime we will find a way.”
Learn more about UCLA Health’s Center for Clinical AIDS Research and Education (CARE).