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As New York’s hospitals filled with pneumonia patients last spring, Dr. Michael Gottlieb flashed back to the earliest days of another mysterious illness.

For months, Gottlieb had vainly treated a young man with an unrelenting fever. The man developed pneumonia from a usually harmless virus and his mouth was covered with a fungus that made it hard for him to swallow or eat.

Another young man soon turned up with similar symptoms. Then, over the course of a few months, three more previously healthy Los Angeles men came down with the same constellation of problems. 

Damian Dovarganes, AP

As he watched them die, Gottlieb was both concerned and intrigued. At 33, he was roughly the same age. Their care became personal as well as professional.

Gottlieb and several colleagues contacted the Centers for Disease Control, which asked them to write up their findings. On June 5, 1981, exactly 40 years ago, their report was published, describing the cases of these five, young gay men whose immune systems had suddenly stopped protecting them, defying every treatment Gottlieb and others tried.

The condition didn’t have a name then, but it would become known as AIDS, acquired immunodeficiency syndrome, and the report Gottlieb and his colleagues wrote would become the first official record of a disease that has since claimed more than 33 million lives around the world.

COVID-19 has done its work faster – infecting at least 172 million people and killing 3.7 million of them in less than 18 months. 

But those who were around for the earliest days of AIDS say the parallels are unmistakable: a deadly pneumonia, a virus that seemed to target certain communities though none was immune, people unknowingly infecting loved ones, friends and strangers.    

Like Gottlieb, many of the doctors and researchers whose career paths were defined by AIDS are now treating COVID-19 patients.

“You start from ground zero and then you build the plane as you’re flying it,”  Gottlieb said of treating both diseases in their early days. “There was this sense of helplessness, of winging it, of doing the best you can with less than adequate tools and learning as you went.”

The differences between the diseases are striking, too.

While COVID-19 was identified and brought to public attention within weeks, the first report of AIDS likely lagged years behind symptomatic cases, and diagnostic tests took five years to develop.

The human immunodeficiency virus that causes AIDS wasn’t identified until 1983, two years after that first official record; researchers released the detailed genetic code of the SARS-CoV-2 virus in January 2020, less than a month after it came to global attention. With that code in hand, scientists immediately began developing highly effective COVID-19 vaccines, a triumph that still escapes HIV researchers. 

“There’s really an extraordinary difference in the pace of reaction to these pandemics,” said Dr. Bruce Walker, a Harvard physician-scientist who has spent decades treating HIV–positive patients and working to better understand the disease. 

Bill Beattie, AP

The hopelessness and desperation of HIV/AIDS struck deep and hard, first among gay men, and then across the world’s poorest communities, including in the United States. 

With COVID-19, racial and socioeconomic disadvantages became quickly evident, with lower-income communities of color disproportionately affected. But it also spread far and fast, touching nearly every community on all seven continents. 

Dr. Julie Gerberding was a young medical intern in San Francisco when the first AIDS patients began arriving: first one, then three, then 12. By the time she finished her intern year in June 1982, nearly all her patients had some manifestation of AIDS, and she often learned how to treat them by asking what they needed.

Later, as a federal official, she helped respond to the first SARS epidemic in 2002 and then, in 2009, while head of the CDC, she helped the country prepare for the H1N1 flu pandemic.

With COVID-19, she’s seeing history repeat itself.

“We’ve watched a lot of the same issues play out over and over again,” said Gerberding, now executive vice president and chief patient officer at Merck. She describes an “unwillingness to accept that something new and important has emerged and could get a whole lot worse.”

Though both pandemics are far from over globally, in the United States, officials talk about ending HIV/AIDS within a decade with medications and prevention measures. Vaccines and public health efforts have cut COVID-19 infections here by more than 90% since January’s peak.

“For those who are skeptical of science and we’ve heard a lot about that in COVID,” Gottlieb said, “we might look to HIV as evidence that science does work.”

The greatest accomplishment of HIV science was the medications that turned the virus from a death sentence into a chronic, manageable disease. 

The first one, azidothymidine or AZT, a repurposed cancer drug approved in 1987, was only slightly helpful. Side effects of AZT and other early drugs were considered worse than the disease, like being on chemotherapy every day for life.

Shayna Brennan, AP

Just a few years later, in 1989, Daria Hazuda joined the search for HIV/AIDS medications.

At one of her first scientific meetings, researchers presented the triple-combination drugs that would transform treatment. “People were astonished,” Hazuda said. “I remember sitting in the audience thinking: ‘I’d better find something else to work on. This has been solved.'”

But then, as she recalls it, a doctor stood up and told his colleagues: “Look at what we’re asking our patients to do.” People had to swallow a fistful of pills three times a day. They suffered horrible side effects. “Now that we know it’s possible, let’s go back and do it right,” Hazuda remembers him saying. 

That idea – that real people have to live every day with the drug therapies she developed – became a driving force in her career, Hazuda said. At drug company Merck, she went on to help create the drug Isentress, the first of a new class called integrase inhibitors, which were less toxic and easier for patients to manage.

Cimmino, Merck Visual Communications

Now vice president for infectious diseases at Merck, Hazuda hopes to keep improving the medications, working toward one pill a week instead of a day, or long-term injectables that would last three months or even a year.

It’s still a challenge, she said to reach everyone who needs treatment or could be helped by taking the same drugs to prevent infection.

“It’s fascinating to see how far we’ve come and how far we still need (to go),” Hazuda said.

For Bruce Richman, the revelation that would change his life came in 2012. He had been diagnosed with HIV in 2003, and though he took his medication faithfully – four pills a day – he considered himself a disease vector, toxic even. 

“I had given up the concept of being intimate without fear,” Richman said. “The idea that I could pass on HIV to somebody was just too much.”

Nine years after his diagnosis, he was finally told that because he took his HIV medications reliably, his viral loads were undetectable. That meant he couldn’t pass on HIV.

The finding so moved him that he’s dedicated his life since to getting the message out: undetectable equals untransmittable, or “U=U.”

Public health officials often avoided telling patients, worried it would make HIV-positive people think they didn’t need their medications or make them vulnerable to other sexually transmitted diseases. 

Richman, founding director of the Prevention Access Campaign, believes it’s far more powerful to let people know they are not dangers to society, just as people vaccinated against COVID-19 are relieved to know they can no longer make others sick.

“With COVID, I think people are going to understand a little bit of what it’s like to be afraid of passing on a virus to the people you love,” he said. “People with HIV have lived with that fear for decades.”

Walker already had spent years watching his patients waste away from AIDS when a healthy-looking man bounded into his office one day in 1994 asking how long he had left to live. The man had been infected 15 years earlier but had defied every expectation of his death sentence.

Tim Clary, AP

Walker realized the man’s immune system somehow kept HIV in check without medication. That launched Walker on a decadeslong quest to understand people he calls “elite controllers,” whose bodies seem to know how to control HIV. 

In 2009, with a $100 million philanthropic donation, Walker founded the Ragon Institute of MGH, MIT and Harvard, an interdisciplinary scientific institute aimed at unraveling the mysteries of the immune system. One of its steering committee members is credited with developing Johnson & Johnson’s COVID-19 vaccine.

Now, Walker, who continues to direct the institute, believes he understands how elite controllers contain and even eliminate the virus. 

He and his colleagues have designed a vaccine with the idea of providing recipients the power of an elite controller.

“We don’t have proof we can do that yet, but we have a really strong rationale for this,” Walker said.

The vaccine will be based on the mRNA technology proven through COVID-19 vaccines, and will target areas of the virus that can’t mutate. Walker hopes to begin testing it within a year. 

Phill Wilson was 24 in 1981 when his swollen lymph nodes suggested he had been infected. His formal diagnosis didn’t come until 1986, delayed by five years because of a lack of testing. His doctor said he had six months to live.

He kept an address book in those days before cellphones. Every time a friend died of AIDS, Wilson would put a checkmark next to that person’s name. He lost the address book around 1987, he estimates. By then, he had added 220 checkmarks.

His own partner died in 1989. “While it was absolutely devastating to lose Chris, he was not the only loss that day (to AIDS).”

Wilson said he still hasn’t completely come to terms with the grief.

“This went on from 1982 to 1997 – that’s 15 years of that kind of intense dying,” he said. “It was impossible to process it or to process any one death, no matter how close that death was to you.”

White House

In 1997, Wilson ended up in an intensive care unit in Los Angeles, connected to tubes and unable to speak. His mother flew in from Chicago expecting to watch him die. Instead, he got his first doses of protease inhibitors, the drugs that transformed the fight against HIV/AIDS.

“Dorothy landing in Oz and all of a sudden the world is in Technicolor … that’s what protease inhibitors were like,” Wilson said. He bounced back “like Lazarus.”

He attributes his long-term survival with HIV to many factors including luck, a focus on living rather than dying, periodic medication vacations in the early days to avoid drug resistance, and his large extended family.

“I am alive today because I personify what happens when people with HIV/AIDS have the love and support we need and deserve from family and friends,” he said. 

Early on, Wilson decided to become an activist and co-founded the Black AIDS Institute. 

Raniyah Copeland is now the group’s president and CEO, calling attention to the fact that both COVID-19 and HIV/AIDS have disproportionately affected people of color. 

Over half of new HIV cases in the U.S. are in Southern states where many people have limited access to health care, Copeland said

“What we see is a widened disparity of HIV, which is part of what makes this 40-year-moment hit so hard,” she said. “We’ve come so far, yet we’re in the same place as we were 40 years ago when we look at who is being most impacted.”

Wilson was an early adopter of medications, trying nearly every new HIV drug as it came on the market. He doesn’t even remember how many pills he had to pop every day at the height, but thinks it was somewhere between 10 and 15, each of which had its own requirement for before a meal or after, “all sorts of crazy regimens.” 

Now, he said, he takes nearly as many medications, but only one is to keep his HIV under control. The rest, he said, are because he’s a 65-year-old man: “I have lived far past my expiration date.”

Aging with HIV has become a key focus of another activist, Jayson Duley, 56, who has been HIV-positive for 20 years.

Jayson Duley

Duley, director of global security for a software company, said his view of HIV/AIDS has changed with the decades.

As a young man, discovering his sexuality, he saw AIDS as a death sentence. His own diagnosis came after treatments had turned it into a chronic infection, and he has lived through a number of improvements in those medications. 

Envisioning the next 20 years, he’s hoping treatments will continue to improve, offering longer-term protection. Maybe vaccines will even provide a cure.

But in the meantime, data suggests HIV-positive people age faster than normal, developing high cholesterol and blood pressure and heart issues at younger ages, though it’s still unclear whether that’s from the virus or the medication.   

“Aging with HIV is scary,” Duley said. “Aging with HIV is our next challenge.”

For his part, Michael Gottlieb, now at APLA Health in Los Angeles, said he’s satisfied with the trajectory of his career. He has been caring for patients for more than 40 years.

In 2020, he began treating HIV-positive patients with COVID-19, who all fared well. “I’ve been able to save some lives,” he said. “That’s been the most satisfying thing.”

Contact Karen Weintraub at kweintraub@usatoday.com.

Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.

Shizuo Kambayashi, ASSOCIATED PRESS

For Eric Sawyer, the 40th anniversary of the first scientific report that described AIDS as a new disease brings up “a dichotomy of feelings.”

When Sawyer, who was living in New York, first began exhibiting symptoms of HIV in 1981, he said he was urged by his friend, the late activist and playwright Larry Kramer, to begin seeing “a doctor who’s also gay, who is seeing patients with this disease.”

That same year, across the country, a young physician named Michael Gottlieb and his colleagues at UCLA wrote in an official Centers for Disease Control and Prevention report about patients diagnosed with a lung infection common in what would come to be called AIDS.

“In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died,” the report, published on June 5, 1981, in the CDC’s Morbidity and Mortality Weekly Report, stated.

Sawyer, now 67, recalled being told by a doctor, at just 32, to put his affairs in order.

“In addition to being elated that I have survived for 40 years with this illness, I also have a certain degree of survivor’s guilt,” Sawyer, a founding member of AIDS activist group ACT UP New York, told NBC News. “Why me? Why did I deserve to survive when so many of my friends and a couple of my boyfriends died really horrible, ugly deaths at very young ages?”

Four decades after the CDC published the now-historic report, long-term survivors like Sawyer, as well as HIV/AIDS activists and doctors, are reflecting on their experiences on the front lines of the crisis and warning of the inequities that have allowed it — which has killed an estimated 34.7 million people globally since the epidemic began, according to UNAIDS — to persist.

Oct. 19, 201601:05

“AIDS in the United States is not over, and especially it’s not over in the Global South or around the world,” said Jawanza James Williams, the director of organizing at VOCAL-NY, a nonprofit that helps low-income people impacted by HIV and AIDS. “There’s a sort of tendency to talk in the past tense, as if HIV and AIDS, as an epidemic, has been ended in the States, and it erases the realities and the experiences of Black people, of brown people, or poor people, people that are uninsured, and it really misses the mark.”

People of color are disproportionately impacted by HIV, according to the CDC. Of new HIV diagnoses in the U.S. in 2018, Black Americans accounted for 42 percent and Latinos accounted for 27 percent.

Gottlieb’s encounters with the patients he would end up documenting in his June 5, 1981, CDC report started with one gay man “whose immune system was kind of totaled by something.” Then, within a month, there were three patients just like the first, he recalled. They were all between the ages of 29 and 36.

“Something clicked. There’s something going on that is very unusual and needs to be reported to someone,” said Gottlieb, now an HIV and internal medicine specialist at Los Angeles-based APLA Health, a network of Federally Qualified Health Centers that serve LGBTQ people and people impacted by HIV.

While the CDC uses the date of the report to mark the start of the HIV/AIDS epidemic, “that’s not factually correct,” Gottlieb said.

Prior to 1981, evidence suggests that Robert Rayford, a 15 year-old boy, died in St. Louis in 1969 from a condition later identified as AIDS.

Later in the 1970s, there were accounts of individuals becoming sick with parasites or what was then called “Gay bowel disease,” “and it probably was HIV, but we didn’t know it,” Dr. Howard Grossman, a primary care physician specializing in HIV treatment and prevention, told NBC News.

For activists and survivors, the history of the HIV crisis transcends a linear timeline that can forget the nuance of human experience, according to Ted Kerr, a writer and organizer whose work focuses on HIV/AIDS.

“My No. 1 fear is that people will think that HIV started 40 years ago, and what that does is it suggests that HIV begins when the United States government says it begins,” Kerr said. “Actually for me, it begins when someone’s journey with HIV starts. So, the history of HIV starts tomorrow for somebody when they get their HIV diagnosis. HIV started in 1969 for the Rayford family in St. Louis when Robert died, and, of course, that also includes the June 5 article from the CDC.”

As a gay man in medical school in New York in the early 1980s, Grossman, now the medical director of Midway Specialty Care Center in Wilton Manors, Florida, said the first stories he heard of people getting what would eventually be known as AIDS were imbued with “judgment” about drug use and promiscuity.

In an article from May 1982, The New York Times referred to the disease as a “new homosexual disorder.” A month later, in NBC News’ first report on the mysterious illness, “Nightly News” anchor Tom Brokaw reported that a new study found “the lifestyles of some male homosexuals has triggered an epidemic of a rare form of cancer.”

June 17, 198201:52

When Grossman attended a packed meeting convened by Larry Kramer and the newly formed Gay Men’s Health Crisis in 1983, “that was when people realized something really bad was going on,” he said.

As a medical resident in a Brooklyn hospital that same year — when much of the public still thought this mysterious illness primarily affected gay men — Grossman saw intravenous drug users, people of Caribbean descent and women who, in retrospect, he believes were exhibiting symptoms of AIDS.

Less than a decade later, Ivy Kwan Arce, a long-term survivor of AIDS and an ACT UP member, said she encountered disbelief when she asked her doctor for an HIV test after seeing an ACT UP poster that said, “Women don’t get AIDS. … They just die from it,” with fine print recommending that women with multiple sexual partners or who are drug users get tested.

After Kwan tested positive, she had to retest because the attitude was that “maybe the test was wrong.” She ended up at an ACT UP meeting at The Lesbian, Gay, Bisexual & Transgender Community Center.

At the time, the CDC’s definition of AIDS excluded medical conditions experienced by women who were later known to have the disease, causing the government to undercount the number of women who had died due to AIDS-related complications. Kwan participated in activism that pushed the government to expand the definition of AIDS to include specific conditions for women, alongside Katrina Haslip, an HIV/AIDS activist and fellow ACT UP member who died in 1992 from complications of AIDS, according to a New York Times obituary.

June 2, 202105:56

Kwan had been working as a graphic designer, but when her workplace found out she was HIV positive, she said they announced her diagnosis to her co-workers, forbade her from using the bathroom and asked for a calendar of her menstrual cycle before she was eventually fired.

More than 30 years after her diagnosis, Kwan said, the narrative for women living with HIV/AIDS “has not changed a whole lot.”

Jawanza James Williams, who was diagnosed with HIV at 23, said various communities that were responding to the crisis early on have been erased from AIDS history.

“It suggests that somehow Black folks, brown folks, women, trans people weren’t on from day one, responding with love to this crisis and still are,” he said.

When Williams was diagnosed with HIV in 2013, he said he thought about the more than 30 years that had lapsed since President Ronald Reagan first publicly said the word “AIDS” in 1985. By the end of that year, the U.S. had more than 16,000 reported cases of the then-fatal illness.

For Williams, his diagnosis was also a moment of realization.

“It wasn’t some unique sexual behavior,” Williams, now 31, said of why he contracted the virus. Instead, he said he realized it was because of systemic reasons — such as race, location and class — and his close proximity to communities that are disproportionately impacted by HIV/AIDS.

While there is currently an effective HIV-prevention drug available for those at risk of contracting HIV, and a pill with few side effects that can treat those who are already living with the virus, Sawyer does not want the public to overlook the hundreds of thousands of people around the globe who contract HIV and die from AIDS-related complications annually. In 2020, an estimated 1.5 million people became newly infected with HIV, and 690,000 people died from AIDS-related illnesses, according to global statistics from UNAIDS.

“That’s far too many people dying and far too many people getting infected with what is a fatal disease if you don’t get access to the latest medical interventions and the latest medications,” said Sawyer, a co-founder of Housing Works, an organization working to end the dual crisis of homelessness and AIDS.

For Sawyer, the 40th anniversary of the historic June 5, 1981, report is a moment to recognize the lessons that “AIDS should have taught us.”

“It’s time we start caring about the health of everyone on this planet,” he said.

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Editor’s Note: This story by Patti Singer was originally published in 2016. We republish it to acknowledge the 40th anniversary of the first cases that would be linked to HIV/AIDS in a now historic edition of the CDC’s Morbidity and Mortality Weekly Report released June 5, 1981.

At the time, Dr. William Valenti was an infectious disease physician at the University of Rochester. Now Senior Vice President for Strategic Advancement, Chief of Innovation, Co-Founder, and Staff Physician at Trillium Health, he said in a statement Friday; 

“Something about it was troubling – it was a cluster of cases in gay men. This was during a time when people rarely talked about sexual health or sexually transmitted infections. It would eventually become a global pandemic,” Valenti recalled. 

“There was no turning back. There was a constant stream of new patients. The learning curve was steep. It was very much like COVID – we were getting new information on a daily basis,” said Dr. Valenti. 

He hopes to see the end of HIV/AIDS in his lifetime. “I’m cautiously optimistic about a real cure – a vaccine to prevent it, or a way to eliminate it from the body after early detection and treatment,” Valenti said.

Original Story:

Somewhere — if he could just put his hands on it — is the article that changed his life.

In one of the 60 or so boxes Dr. William Valenti already has provided to posterity, or maybe in the 10 boxes still in his office, sits the June 5, 1981, report from the Centers for Disease Control and Prevention about five gay men with infections that overwhelmed their immune systems.

“Right from the beginning with HIV, AIDS as it was first known, you knew there was a story to be told,” said Valenti, who has been providing care to people with the disease ever since it was first identified.

Valenti said he’s careful with what he tosses, then in the next breath admitted he’s less meticulous with how he saves things.

Fortunately for anyone who wants to know about Rochester’s response to AIDS, Valenti’s papers EW cataloged at the Rochester Medical Museum and Archives, housed at the Rochester Academy of Medicine at 1441 East Ave.

If placed end to end, the 16 shelves holding the Valenti Collection of Early AIDS Imprints would stretch 45 feet. (A catalog of the holdings is below.)

“At this stage of my career, what it means to me is you know, we almost did it,” said Valenti, standing at the shelves, his hands resting on two of the boxes. “I feel like this is what it took to get to the finish line, or even begin to talk about the finish line.”

The collection contains presentations and articles written by Valenti, who was among the first doctors in the country to treat people with HIV/AIDS. Most of the material comes from 1985 to 1999, and it includes journal articles, publications from international AIDS conferences, videos, photos and medical and pop culture books about the disease. Valenti said he did not keep diaries, but the collection does have his annotated appointment books and personal items such as letters, speeches and awards.

While a Google search might be able to turn up some of the documents, the Valenti Collection puts them in one place. The catalog is expected to be online by the end of the year, but the collection will need to be viewed in person.

“I think it should appeal to people who have a social conscience and are looking at how society responds to the HIV epidemic,” said Dr. Steve Scheibel, who co-founded the Community Health Network with Valenti in 1989.

“As Bill would say, there are lessons to be learned,” said Scheibel, now director of research at Borrego Health in southern California.  “It would be a shame if we didn’t have that history … to learn our lessons earlier as opposed to learning them later.”

Valenti was overseeing the infection prevention program at Strong Memorial Hospital when he read the CDC article.

“All of a sudden, because I had been dealing with exotic or interesting diseases, when HIV came along it wasn’t characterized, nothing was known, nothing was clear,” he said. “So I got interested and started seeing patients after it was first described.”

Valenti said his professional and personal circles accepted the need to help treat individuals who were stigmatized in other circles because of the disease.

“Something as frightening as a fatal illness that kills young people can be pretty disabling,” Valenti said. “What we were doing gave people some kind of focal point to participate in the response.”

Valenti is writing a memoir about the first 10 years of AIDS, which he expects to self-publish in time for World AIDS Day.

“I think about the patients and their families,” he said. “In the early days, it seems like everyone came to an appointment with their mother. A lot, a lot of mothers. A lot of families in the early days, families’ lives interrupted.”

He recalled weeks in which he attended multiple funerals, and remembered fundraising efforts that would help people with AIDS. Community Health Network saw 76 patients its first year. It is now Trillium Health, which also provides primary care to lesbian, gay, bisexual and transgender individuals.

More:Alarming rise in STIs has experts calling for more inclusive sex education

For several years, Valenti’s papers had been at the AIDS Resource Library at Monroe Community College, where they were used by students in the health professions. Around 2006, the collection came to the Rochester Medical Museum and Archives, the historical repository for Rochester Regional Health, according to director/curator of collections Kathleen Britton.

“The best way to describe it is, he emptied his file cabinet,” she said.

Britton had the files put in alphabetical order, but they sat idle until a visit by Evelyn Bailey, who chronicles gay history as chairwoman of the Gay Alliance of Genesee Valley project Shoulders to Stand On.

“I was after Bill Valenti to get his papers and to get his archives in order for years,” she said. “When you ask who in Rochester is identified with the AIDS epidemic, it’s Bill. His papers document a history. It’s so thorough and so precise and exact.”

Britton applied for and received a $3,500 state grant, which allowed her to hire Aime Alscheff to arrange the collection. Valenti was on the staff of the former St. Mary’s Hospital, which qualified his collection for archiving by Rochester Regional Health. 

“Part of what’s interesting for me and what is going to help illustrate to people who weren’t around when this epidemic broke, is how big and how scary it was,” said Britton, 46, who was a teenager when AIDS appeared.

While the collection bears his name, Valenti said the documents represent the work of thousands of people, particularly those at the heart of the crisis.

“I think about the patients,” Valenti said. “I learned from every one of them. It’s been a privilege, it really has.”

PSINGER@Gannett.com

On September 25th there will be a 90-minute program broadcast on RCTV and Facebook Live that includes the full reading of the play, Unfinished Business, based on Dr. Valenti’s book about the early days of the HIV/AIDS epidemic.