Science & Medicine

Wilson Cruz:  It’s Wilson Cruz again.  In 1981, doctors in Los Angeles, San Francisco, and New York began reporting small clusters of cases of gay men with fatal and unusual infections and cancers. On June 5, 1981, the US Centers for Disease Control (or, CDC) released its first bulletin on what would become known as AIDS.  

Dr. Michael Gottlieb:  I’m Dr. Michael Gottlieb, the principal author of the June 5, 1981 CDC report that identified AIDS as a new syndrome of immunodeficiency.  At the time, I was a  member of the faculty at the UCLA Medical School.  Additional authors of the report were Dr. Joel Weisman, a well-known physician in the L.A. gay community, and other colleagues. The report described five homosexual men with a rare type of pneumonia called pneumocystis which was known to occur only in patients with severe immune deficiency.  A month later, in July 1981, the New York Times published an article on another alarming CDC report, describing 41 gay men from New York and San Francisco with Kaposi’s sarcoma (or, KS).  KS was a rare cancer of blood vessel cells usually found in elderly men which causes dark purple lesions or blotches to appear on the skin. Many of these 41 men also had other life-threatening, so-called opportunistic infections, including pneumocystis, and had severely compromised immune systems.  

Wilson Cruz:  These were the first recognized cases of a quickly emerging epidemic that would polarize the nation and decimate vulnerable, marginalized and often vilified communities.  Soon, similar cases emerged from across the U.S., mostly in large urban areas. Many hospitals in these large cities became inundated with critically ill patients with life-threatening infections and cancers rarely seen by most doctors. The medical care system in many large cities was stressed almost to the breaking point, not unlike the early days of the COVID-19 pandemic.  Hospitals were so crowded that it could take up to one month to be admitted and, once admitted, patients were often left on gurneys in hallways. Emergency rooms were so full that there wasn’t room for doctors to walk through to see patients.  This was especially true at public hospitals like L.A. County USC Medical Center which served one-third of all outpatient AIDS cases in L.A. County during 1984-85.  Public hospitals could not turn away AIDS patients and were more likely to serve communities of color and those with fewer financial resources.   

Sheryl Lee Ralph:  Many hospital staffs were understandably fearful of this deadly new disease with no known cause and unclear modes of transmission, so they were reluctant to enter the rooms of AIDS patients or entered only in full protective gear covering their entire bodies.  Often, staff would slide food through the doorway and some hesitated to provide the expected level of care such as bathing.  This led many patients, their friends and family to feel abandoned and discriminated against.  People with AIDS frequently committed suicide rather than living to suffer the horrible, disabling and often disfiguring series of infections and cancers that came with a badly weakened immune system and for which treatment was not always available.  As with hospital staff, the friends and family members of AIDS patients were often fearful of visiting them while in hospital, especially in the early years of the epidemic when we didn’t know what caused AIDS or how it was spread.  Those not afraid found themselves visiting an ever-increasing number of friends who were hospitalized, released, and soon back in the hospital again.  Many gay men were already estranged from their families because of homophobia, so an AIDS diagnosis only widened the gulf separating them. In other cases, families first learned that their son was gay when he was diagnosed with AIDS.  As a result, many gay men with AIDS often suffered and died alone.  

Cliff Morrison:  In July of 1983, two years after the first report of AIDS in the United States, the first inpatient ward or unit, the special care unit — or SCU — for persons living with AIDS was established at San Francisco General Hospital.  The unit later became more widely known as Ward 5B.  I’m Cliff Morrison, an RN and clinical nurse specialist, and I was the Clinical AIDS Coordinator at San Francisco General and founder of 5B. In that role, I led the planning process for the establishment of the AIDS unit on the fifth floor.  

All staff for 5B volunteered to work there.  This all came about because some nurses, doctors, and other support staff were unwilling to work with people with AIDS or work on a designated AIDS unit.  At this time, most people, and that included healthcare workers, were afraid to be in contact with or touch people with AIDS.  Often, patients were desperately yearning for any kind of human contact.

Ward 5B and several other AIDS units — like those in the Los Angeles area at Sherman Oaks Community Hospital, Hollywood Community Hospital, Midway Hospital and Cedars Sinai Medical Center — were established on the premise of acceptance and compassion.  Nurses, doctors, counselors, and other support staff often would hug and hold their patients. 

AIDS ward staff would dress in costumes for Halloween as well as other special holidays, including birthdays and special events. A common thread in all of these AIDS wards was that patients were allowed to define who their family was.  That included biological family, domestic partners, as well as friends.  Visiting hours were expanded and became more flexible according to the patient’s wishes and needs, including often allowing someone to remain with the patient at night if that is what they wanted.  At this time, doctors could do little to help patients medically, so doctors, nurses, counselors, and support staff made them feel comfortable, safe, cared for, and loved. 

Most importantly, patients were empowered to make end of life choices, and the patients were made the center of their own care planning process to better facilitate patient-centered care.  Dr. Eric Daar was Director of the AIDS unit at Cedars Sinai Medical Center located in West Hollywood from 1991 to 2001. 

 Dr. Eric Daar:  I think as a group, we accepted the fact that most of the patients we met were going to die.  Then our goal and our challenge became how to help them do so in as comfortable and dignified a way as possible. 

All of these endeavors contributed to what would become known as the model for AIDS care in the United States and internationally.  

Wilson Cruz:  It took almost two years after the first reports of the disease, until May of 1983, for a team of French scientists to discover the virus which causes AIDS.  That time frame was fast from a scientific standpoint, but agonizingly slow for the frightened public.  Two American scientists, one at the NIH and the other in San Francisco, independently confirmed this discovery and link to the cause of AIDS.  In September 1983, the CDC announced that the virus that causes AIDS is not spread by casual contact, food, water, air, or surfaces.  

Reporter:  The Surgeon General and other health experts say if you keep to one safe sex partner or use condoms, don’t engage prostitutes or share dirty needles, the likelihood of contracting AIDS is extremely remote.  You can’t get AIDS from passing money, sneezing, handrails, slicing or handling food, doorhandles, swimming pools, holding hands, toilet seats, sharing food with someone, mosquitos or other insects, using public facilities, shaking hands, sharing a telephone, coughing, hugging or kissing.

ABC News (1988), https://www.youtube.com/watch?v=kdEJt9ZLCec&t=423s 

There was no longer a reason for the public to fear catching the disease by touching or being around a person with AIDS. The CDC later confirmed that HIV, the virus that causes AIDS, is only transmitted by blood-to-blood contact, sexual intercourse and mother-to-child transmission during pregnancy and delivery.  Yet during the two years since the disease was first reported, 1981-1983, fear of the so-called “Gay Cancer” grew among the population, and we didn’t know what caused the disease or how it spread.  Even though in late 1983 when we knew the cause of AIDS and how it was transmitted, we still didn’t know how to test for the virus in order to know who was carrying it, and we had no way to prevent or effectively treat the disease.  We just knew that it was deadly.  Imagine the panic.  Gay men who might otherwise be invited to a straight friend’s dinner or party found that the invitation never arrived or, if they were invited, they might find themselves served with disposable paper plates, paper cups and plastic utensils while the straight guests dined with China plates, glassware, and silverware.  

In March 1985, nearly four years after the first reports of the disease, the Food & Drug Administration, or FDA, approved the first blood test to detect antibodies which showed that a person was infected with HIV.  By then, it is estimated that 7,000 Americans had died of AIDS.  

Rigo Garcia:  Before blood tests were available, those requiring blood transfusions or blood products to stay alive suffered tragic consequences. I’m Rigo Garcia, Executive Director of the Hemophilia Foundation of Southern California. People with hemophilia or a bleeding disorder lack a protein required for normal blood clotting. They depend upon infusions of a concentrated blood product that replaces the missing protein and stops the bleeding. About half of people with hemophilia require these infusions about twice every week. That concentrated blood product was made from donated blood which could not be screened for HIV until tests were developed in 1985. In 1987, the CDC estimated that over 60% of the nearly 16,000 people with hemophilia in the US, and over 90% of those with the severe form of hemophilia, were infected with HIV through contaminated blood products. Sources estimate that approximately 4,000 people with hemophilia or a bleeding disorder—one out of every four—died of AIDS before 1985 when the blood product was treated with heat to make it safe to use. Thousands more who were already infected died thereafter. For one year or more before the heat-treated pasteurized product was released to the public, drug makers like Cutter, a subsidiary of Bayer, continued to sell the earlier, non-pasteurized version of their hemophilia drug product. They were slow to affix warning labels to the product about the risk of contracting HIV. 

Reporter #1:  From Cutter’s General Counsel.  

Reporter #2:  In fact, just days after the CDC linked the death of the baby to tainted blood, a lawyer at Cutter Labs wrote an internal memo, urging printed warnings in every package of Factor 8.  That didn’t happen.

“Street Smarts” (CBS News), “Haemophilia Archives”, https://www.youtube.com/watch?v=4JyabzTRZ1A&t=414s

Critics allege that Cutter sought to maximize corporate profit, despite knowing or having good reason to know that use of the earlier version of its product risked widespread HIV contamination for the hemophilia community. In addition, thousands of Americans who received blood transfusions during medical procedures were infected with HIV-contaminated blood before blood products could be tested for the presence of HIV. 

Noelle Simeon:  In the 1980s through the mid 1990s, 15-25% of babies whose mothers had HIV or AIDS contracted HIV.  This happened because of the blood passed between mother and fetus during pregnancy or birth, or because of HIV present in breast milk.  Many of these babies became orphans because their parents died of AIDS.  Other babies who required blood transfusions during surgery were infected by HIV-contaminated blood before 1985 when donated blood could be tested for the presence of HIV.  I’m Noelle Simeon, and I received a transfusion of HIV-contaminated blood when I had emergency intestinal surgery as a 10-day- old infant.  Studies have indicated that at least 10,000 babies contracted HIV from their mothers in America from 1981 to 1994 when HIV testing and preventative treatment became standard. During that same period, hundreds of infants were infected by HIV-contaminated blood in the U.S. It is estimated that half of the HIV-positive babies from 1981 to 1994 died before age 2, and approximately 80% died by age 5.  Doctors had to give grim predictions to parents.  Parents like mine struggled to decide whether to tell their children about their HIV status.  Parents frequently hid the news from family members and friends, and feared that school districts would not allow their children to attend school. I didn’t attend school until about the 3rd grade, and went to my first public school in 7th grade. Until 7th grade, my days were mostly spent by myself unless my cousins or family friends with kids were getting together with my parents.  For those of us who survived, issues of fear, isolation and shame remain challenging legacies even as medication, when taken as prescribed, has allowed us to live healthy, normal lives and not risk transmission to our sexual partners.

Hank Stratton: I’m Hank Stratton, an early Board member of the Foundation for the AIDS Monument. It took between one and two weeks to get results of the HIV blood test.  Imagine how anxious you would be during that time.  Not until 1992, 11 years after the first public reports of the disease, could you get a rapid HIV test that gave you results in 10-20 minutes.  Initially, many people were reluctant to get tested.  Why find out that you are HIV positive if there is no treatment, if you could soon die of an incurable disease?  Because of the fear, homophobia and stigma in our country, if you were HIV positive, you could lose your job, your housing, your health insurance and the support of your friends and family.  As a result, lots of people didn’t want to get tested or to admit they were HIV positive if they knew their status.  Researchers and public health officials didn’t have accurate data on how widespread HIV was, so they couldn’t design effective prevention policies and convince lawmakers to fund research, prevention, and care.  Also, if people didn’t know they were HIV positive, they couldn’t warn their sexual partners.  So, the benefits of getting tested for HIV were not so clear early on, and the disease kept spreading and spreading.  

In 1987, the first drug to treat HIV, called AZT, was approved by the FDA.  A large clinical trial showed that AZT slowed the virus and reduced the severity of symptoms compared with those taking a placebo. Initially, AZT was prescribed at high doses that had side effects such as extreme fatigue, nausea, anemia, and lowering of infection-fighting blood cells in some, but not all, persons taking it.  By 1991, scientists realized that AZT’s benefits lasted only 6-9 months, before the virus mutated and became resistant to the drug.  It was back to the drawing board for scientists trying to find an effective way to treat HIV and AIDS.  By the end of 1987, over 40,000 Americans had died of AIDS.  

Many patients turned to holistic and spiritual healing practices when Western medicine didn’t offer any relief.  Spiritual leaders like Marianne Williamson and Louise Hay promoted self-love and positive thinking to combat internalized homophobia and AIDS stigma.  Another four years went by.  

Karl Schmid: I’m Karl Schmid, reporter for KABC TV in Los Angeles and creator and host of Plus Life Media.  From 1991-1993, scientists developed a slow but steady stream of other similar HIV medications. Combining two of them together prolonged their effectiveness to 12-18 months, but after that the virus mutated and became resistant to both.  Clinical trials had essentially failed, and despair among affected communities grew more dire.  In 1992, AIDS became the leading cause of death of men 25-44 years old, and it remained so until 1996. By the end of 1993, nearly 200,000 Americans had died of AIDS.  

In 1996, 15 years after the disease was first discovered, and after nearly 350,000 Americans had died, a truly effective treatment was developed and approved by the FDA.  Drugs called protease inhibitors, used in combination with the antiretrovirals introduced in the early 1990s, finally provided lasting suppression of the virus and stopped resistant viruses from developing.  

Ed Bradley:  How do they work?  HIV is a virus that infects healthy cells and then uses three key enzymes to reproduce. Drugs like AZT attack just one of the three.  The new protease inhibitors attack a second enzyme. It’s the one-two punch, the combination of different drugs working together, that’s having such promising results.

“60 Minutes” (CBS News, 1997), https://www.youtube.com/watch?v=d9koS2TbHts 

Think about it:  15 years of death, fear and suffering, until an effective treatment was found.  Four years before we could even get a blood test to find out who had the disease.  Compare that to COVID-19:  we had a blood test to detect COVID-19 antibodies about one month after lockdowns began in the U.S., and approximately nine months after lockdowns started we had a vaccine to prevent serious illness from COVID-19.  15 years for a treatment that worked for AIDS, a disease which disproportionately affected the gay community and people of color, versus 9 months for COVID-19, a disease which affected the general population.  The advancements made through decades of HIV research saved millions and helped us overcome a devastating pandemic.  Without the selfless contributions of the HIV community, the COVID outcome could have been much worse. 

There is still no cure for AIDS, still no vaccine. But since 1996 we’ve been able to keep people alive and well for years if they can get access to and can afford medical care and HIV medication.  In 2012, HIV prevention medications, both pre-exposure prophylaxis or PreP, and post-exposure prophylaxis, or PEP, became available.  PEP and PreP are reported to be 99% effective in preventing transmission of HIV when taken as prescribed.  Those with HIV who take their HIV medications on schedule can reduce their viral loads to undetectable levels, meaning they can’t spread the virus to their sexual partners.  We call this Undetectable-Equals- Untransmissible, or U=U.  Those living with HIV who have access to and can afford medical care and medication can lead normal, healthy sex lives without fear of transmission, and increasingly without the stigma and sense of isolation that people with HIV lived under for decades. 

Phill Wilson:  Hi, I’m Phill Wilson.  In 2019, Black people comprised just over 13% of the U.S. population, but we represented over 40% of new HIV infections and 43% of deaths among HIV positive people. Latinos comprised 18.5% of the U.S. population but represented nearly 25% of new HIV infections.  Black people in the U.S. are diagnosed with HIV at a rate more than 8 times that of White people, and Latinos at a rate of more than 4 times that of White people.  Black women are 18 times more likely than White women to become infected with HIV.  But through it all, these communities demonstrate their resilience by fighting against the odds, building institutions to care for the living and the dying, and making a way out of “no way.”  New generations of young BIPOC people continue to create new advocacy strategies to respond to the pandemic and stand strong in their unwavering belief that ending AIDS is possible.  Failure is not an option.

Russell Thornhill: I’m the Reverend Elder Russell E. Thornhill.  In Linda Villarosa’s 2017 cover story of the New York Times Magazine entitled “America’s Hidden HIV Epidemic,” she documents the struggles of Black gay men in Jackson, Mississippi against HIV and AIDS. The scenes she describes of young men newly diagnosed with HIV and near death are shocking. The story seems like it should belong to a different era—to 1987, not 2017. Still, after decades of medical neglect shaped by racism, homophobia, and a collective indifference toward poverty, Black and Latino gay men – especially in the South, in rural areas, and in poor areas across the country – continue to die of a disease that, for others with more resources, has long since become a chronic but manageable condition.  

Maria Roman:  The same can be said for members of the Trans community. It’s Maria Roman again.  We in the Trans community were largely invisible from public health studies and conversations about HIV and AIDS. We didn’t receive targeted outreach for prevention and treatment, and had difficulty finding healthcare providers who affirmed us and understood our needs.  The same is still true today.  Members of the Trans community deal with deep-seated, pervasive Transphobia and frequently experience poverty.  The life challenges and societal scorn facing us and many other members of the LGBTQ community have led some to engage in substance abuse and others to resort to sex work for survival. As a result, they have an increased risk of getting HIV.   

Russell Thornhill: Over the years many have concluded that early depictions of AIDS as a “white gay disease” is one reason that Black and Latinx communities did not recognize and acknowledge the growing crisis sooner. However, the exclusion of Black and Latino gay and bisexual men from high-profile AIDS groups in the early years of the epidemic was the result not only of their absence from early AIDS statistics, but also of the racism, the homophobia and the segregation that were endemic in urban gay communities.  The search for a vaccine and a cure, and the struggle for a more equitable healthcare system, continue.