The first report – June 5, 1981

It is now 40 years since the first official medical announcement on what would come to be known as the HIV/AIDS pandemic was published. In the bulletin Morbidity and Mortality Weekly Report (MMWR), edited by the Centers for Disease Control (CDC) in Atlanta, a one-page article described five mysterious cases observed from October 1980 to May 1981 in three different Los Angeles hospitals. All five patients were young men in their late twenties, early thirties, and they were all diagnosed with a very rare kind of pneumonia – Pneumocystis carinii pneumonia, or PCP – normally only found amongst infants or adults receiving immunosuppressing drugs. Nothing in the five patient’s medical history indicated any explanation. The only thing they seemed to have in common was that they were gay – or as it was stated in the text, they were all “active homosexuals”.

The short notice in MMWR is often described as the starting point for the medical attention of the HIV/AIDS pandemic, and the many challenges – including stigma – that are still with us today (1). But in the early 1980s, the virus had already been spreading for decades. With the help of preserved blood samples from the 1950s and 60s, and modern genetics, we now know that the transfer from animals to humans most likely occurred one hundred years ago (2). Though, it was not until the last decades of the 20th century, as a result of fast international travel and social, economic and cultural transformations, that local outbreaks evolved to the still ongoing HIV/AIDS pandemic.

Going back to 1981: What reactions did the first reports of a strange, new disease generate – amongst American medical researchers and doctors, and in the metropolitan gay community? And from a national Swedish perspective, how was the first reports of a potential new epidemic perceived, and when were the first Swedish cases reported? Finally, returning to our own time: What can we learn from the early MMWR report and its place in the official history of HIV/AIDS?

The US

In America, the first sign of a new epidemic was noticed well before the publishing of the MMWR article on June 5, 1981. From the late 1970s, unexpected, strange and untreatable conditions among young men – but also women and children – left physicians confused and anxious. Donna Mildvan, chief of Infectious diseases at Beth Israel Hospital on Manhattan’s Lower East Side, New York, was one of these early doctors that noticed that something  frightening was about to happen. In June 1980, a patient came in with a combination of rare symptoms and no diagnosis or treatment seemed to be right: “We were totally bewildered”, she recalled later when they found out that the patient was severely infected by cytomegalovirus, a condition almost unheard of. “There was no treatment. We tried a few drugs, but nothing changed. He died in December. I can´t even begin to tell you what an awful experience it was. You don´t lose a 33-year-old patient. We agonized over it. Agonized over it all the time.” (3)

In another part of New York, dermatologist specialist Alvin Friedman-Klein at the same time met a new patient that up till then had eluded his previous doctors with his strange symptoms. ”He had enlarged lymph nodes, he had fever, weight loss, large spleen; and incidentally he had some brownish purple spots on his lower extremities which were ignored by all the physicians who were taking care of him.” After extensive medical examination, Dr. Friedman-Klein concluded that the patient had an exceptionally rare kind of cancer, Kaposi’s sarcoma. He contacted some colleagues to discuss the puzzling case, and within a few weeks’ time he knew of more than 20 similar cases in the New York and San Francisco area alone. (3)

Alvin Friedman-Klein, MD at New York University Medical Center, shares his experiences of AIDS in in the early 1980's. He.was one of the doctors who treated the famous 'Patient Zero', Gaetan Dugas.

In 1980 and early 1981, cases of Pneumocystis carinii pneumonia, cytomegalovirus and Kaposi’s sarcoma began to appear at both the east and the west coast of USA. Michael Gottlieb, a then 33-year old immunologist at University of Los Angeles, UCLA, came to sum up the first five cases of Pneumocystis together with officials from CDC – there was simply no time for a traditional scientific article as the number of patients was increasing fast. Gottlieb remember how they met up in the CDCs official’s apartment to quickly sketch out “what became the Morbity and Mortality Weekly report (MMWR) of June 5, 1981”. (3)

When published, the report went largely unnoticed by both medical practitioners and the press. Few papers and only one news agency, the Associated Press, ran short articles on the CDC report. Kidney specialist, and later AIDS activist Neil Schram, is probably representative in his remarks when interviewed years later. “Understand, most physicians were absolutely disconnected from the MMWR. That was a publication that the CDC put out for the public health people”. Or as another physician put it: “I wasn’t reading the MMWR back then; who read the MMWR?”. (3)

In the beginning of July 1981, the first MMWR publication was followed by a second – “Kaposi’s Sarcoma and Pneumocystis Pneumonia Among Homosexual Men – New York and California”. In the New York Times, Lawrence K. Altman’s article “Rare Cancer Seen in 41 Homosexuals” (July 3, 1981) gave the growing number of cases its first national US coverage. In the years to come, obviously, frequent announcements were made by both the CDC and other medical journals, not to speak of the general press. In the summer of 1982, the new disease got its official name, acquired immune deficiency syndrome. And soon thereafter, in 1983, 1984 and 1985, AIDS was known to everyone.

But in the very early 1980s, lay presentations of scientific articles in the gay press were an important – if not the only – source for medical information about AIDS (4). Papers like the New York Native, were also vital to rise a more general awareness of the new epidemic. “If this article doesn’t scare the shit out of you, we’re in real trouble”, AIDS activist Larry Kramer wrote in the ‘Native’ under the headline “1,112 and Counting” in March 1983. “If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get”. Gay men have to fight for their lives and not only because of AIDS, Kramer stated. Homophobia, poverty, lack of solidarity and unwillingness to see and act in all strata of society made an already desperate situation even worse. “After almost two years of an epidemic, there are still no answers. After almost two years of an epidemic, the cause of AIDS remains unknown. After almost two years of an epidemic, there is no cure.” (5)

The same feeling of urgency and a search for genuine engagement, but now on a global scale, is present in a statement made by CDC:s James Curran almost two decades later. As the number of reported AIDS cases in the west had slowed down during the 1990s, Curran announce, the cases worldwide continue to increase rapidly. The need for action is, therefore, still comprehensive. “HIV cannot be viewed as a one-time intervention; it must be accepted as a continuous, multigenerational effort that extends well into the lifetimes of our children and their children. Thinking long-term and remaining committed are the key characteristics needed in both science and prevention in order to maximize the chances of conquering HIV.” (6)

Sweden

Moving back to the early 1980s: What impression - if any - did the first, early articles in MMWR make in Sweden and in a Swedish context?

As so many times before, however, it was informal contacts that gave the first signals that something was about to happen. "At about the same time in late winter or early spring 1981, I was advised by a good friend who was a visiting researcher in the United States, to be aware of any reports in medical journals about strange things that happened among gay and bisexual men in the US", Dr. Lars Moberg remembers looking back on the early 1980s. "Previously healthy men became seriously ill and some were alleged to have died of unexplained illness. According to my spokesman, who in addition to his research also took part in the lively gay scene on the American East Coast, it seemed to be some kind of epidemic." Moberg who, together with another Swedish physician, Geo von Krogh, led an itinerant free-of-charge health practice at local Gay Saunas, had special knowledge and insights in the health of gay men. Still, Moberg recalls, it was a bit of a shock to be reached by the first official medical reports in MMWR. "In the summer of 1981, I got to read about what my friend had predicted would be written about. /.../ In other words, it seemed extremely likely that what was going on was both something new and something very serious." (7)

In the early spring of 1982, the American epidemic was presented to a wider medical Swedish audience. In the leading medical journal Läkartidningen, Dr. Sten Iwarson summarized a worrying situation; little was known about the new disease and the reported cases probably were just "the tip of an iceberg" of a much larger epidemic. (8) By the end of 1982, around a thousand cases of AIDS had been reported from more than twenty countries all over the world. And in December 1982, the first Swedish cases were diagnosed at Roslagstull Hospital in Stockholm. (9) When two cases were confirmed to the general public in February 1983, the tone was thoughtful. "AIDS – acquired immune deficiency syndrome – has in a short time spread among homo- and bisexual men on the west coast of the United States and in New York”, infection disease specialists Eric Sandström and Elias Bengtsson concluded in their scientific overview. “The situation is alarming. Mortality has been reported to be as high as 40 percent, the etiology is not known and the treatment options are limited". (10)

In the years to come, Swedish physicians and medical experts – as well as the general Swedish public – would become more and more aware of the new pandemic. From 1985, AIDS caused an enormous interest in Sweden, not least in the media. The National Commission on AIDS (“AIDS-delegationen”) came to formulate the national strategy and the interest in the commission's work was enormous. "Every meeting with AIDS-delegationen was covered by television and the press", Dr. Lars Olof Kallings writes in his memoirs. "When the doors opened after the meetings, there was a wall of journalists with the microphones in full swing, and the cameras flashed. It was like the announcement of the Nobel Prize in Literature." (11)

Learnings from the past

Now, in the beginning of the third decade of the 21st century looking back to the early 1980s, it is obvious that the first MMWR report by many is seen as the official starting point of the epidemic, and not only from a medical point of view. In Los Angeles, San Francisco and New York, and shortly thereafter in Stockholm and all over the world, doctors and communities mobilized to meet a novel, and alarming, situation.

But as the American historian of medicine Charles E. Rosenberg has pointed out, a “true epidemic is an event, not a trend”. As a social phenomenon, Rosenberg continues, an epidemic has a specific dramaturgic form: it is highly visible, it elicits widespread individual and collective response, activating propitiatory rituals that both reaffirm and contest social values and modes of understanding. Over time, the first progressive revelation and negotiations on public response are replaced with subsidence and retrospection. As an historical event, every epidemic seems to require a specific moment of origin, an official starting point – maybe little noticed at the time but, in retrospect, much more revealing. (12)

June 5, 1981, is undoubtedly one of these early, substantial moments in the history of HIV/AIDS. But as a biological phenomenon – or from the virus standpoint – the timeline is, obviously, more outstretched. In addition, it is important to recognize that the early MMWR announcement is also linked to power and visuality in modern society and medicine. “To put it simply”, as Stephen Epstein writes in Impure Science. AIDS, Activism, and the Politics of Knowledge (1996), “some people get better medical attention, which means that medical professionals ‘attend’ to their ‘unique’ conditions”. In large American cities in the late 1970s and early 1980s, Epstein continues, gay men and some of them affluent and relatively privileged, “found their way into private doctors’ offices and prominent teaching hospitals – and from there into the pages of medical journals”. (13) Or in the words of WHO’s Jonathan Mann in 1988 on why the pandemic was first noticed in America and not elsewhere: “It could have happened in Africa. It could have happened in parts of Latin America. It could have happened in Europe or Australia. And there for the fact that it was discovered in the United States, is a bit of a historical accident – of course related to medical technology, research, and so forth. But it didn’t have to be discovered there. And sometimes it is interesting to reflect if it had been discovered in Africa, for example. It would have been known as a heterosexual disease, which also effect homosexuals. Whereas it was discovered in the United States, in the gay population, it generally been thought about by many people – although incorrectly – as a homosexual disease that effect some heterosexuals”.

Jonathan Mann, was a US medical doctor and influential within the World Health Organization (WHO). Here he talks about the global understanding of the disease between 1981 and 1988.

Back in the early 1980s, the new virus was particularly spread among many young American gay men compared to many other social groups or communities. But national and global differences in access to health care and medical attention – together with an assumption amongst many doctors that gay men were especially plausible to attract various infections – contributed to the fact that the first official medical reports came from American cities, hospital, and medical publications. Public health is always connected to societal structures and resource allocation, and HIV is no exception as UNAIDS executive director Dr. Peter Piot stated in 1998:

“The global HIV/AIDS epidemic has taught, or retaught, us many important lessons. It has confirmed the importance of socioeconomic and cultural factors in health. It has shown that when human rights are not protected, people are more vulnerable to disease. And it has reminded us that, although infectious diseases once seemed to be on the wane, a new worldwide epidemic can break out at any moment.” (14)

In an interview from 2007, Peter Piot, Executive Director of UNAIDS, talks about the discoveries on AIDS, which he was part of early in his career as a PhD in Medicine.

Peter Piot’s words from the twilight of the second millennium, echoes into our own times. Undeniably, epidemics – and even more, pandemics – have the potential to challenge, and change, societies. To conclude: June 5th, 1981 is truly an important date in the long, complex global history of HIV/AIDS. But indeed, more voices still need to be heard from the early years of the pandemic.

References:

1. Green (2007). https://www.hiv.gov/blog/remembering-june-5th. Mirko D. Grmek, History of AIDS. Emergency and Origin of a Modern Pandemic (Princeton, New Jersey: Princeton University Press, 1990).
2. Sauter & Kirchhoff (2019). Sharp & Hahn (2011).
3. All quotes and general information is collected from Ronald Byer & Gerald M. Oppenheimer, AIDS Doctors. Voices from the Epidemic. An Oral History (Oxford & New York: Oxford University Press, 2001), 11-20.
4. Dennis Altman, AIDS In the Mind of America. The Social, Political, and Psychological Impact of a New Epidemic (Anchor Press: New York, 1986), 3.
5. Larry Kramer, “1,112 and Counting”. New York Native, March 1983.
6. James W. Curran, “The Eras of AIDS”, in Raymond A. Smith (ed.), Encyclopedia of AIDS: a social, political, cultural, and scientific record of the HIV epidemic (Penguin Books: London, 1998), xx.
7. Lars Moberg, HIV och AIDS (Alhambra: Stockholm, 2000), 9-10.
8. Sten Iwarson, “Infektioner och Kaposis sarkom hos homosexuella män”, Läkartidningen 1982;13(79):1225.
9. PehrOlof Pehrsson et al., “AIDS hos homosexuella män – första fallen i Sverige”, Läkartidningen 1983;7(80):545-7.
10. Eric Sandström & Elias Bengtsson, ”Förvärvad immundefekt (AIDS) – klinik och profylax”, Läkartidningen 1983;7(80):529-30.
11. Lars O. Kallings, Den yttersta plågan. Boken om AIDS (Norstedts: Stockholm, 2005), 120.
12. Charles E. Rosenberg, “What is an Epidemic? AIDS in Historical Perspective”, in Charles E. Rosenberg, Explaining Epidemics and Other Studies in the History of Medicine (Cambridge: Cambridge University Press, 1992), 279.
13. Stephen Epstein, Impure Science. AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1995), 49-50.
14. Peter Piot, “Lessons from the Global HIV/AIDS Epidemic”, in Raymond A. Smith (ed.), Encyclopedia of AIDS: a social, political, cultural, and scientific record of the HIV epidemic (Penguin Books: London, 1998), xxi.