Chapter 4


Recognizing AIDS in two epidemic patterns,

 1981-84

 

In June 1981, doctors in Los Angeles reported five men with a rare type of pneumonia caused by a common yeast-like fungus that is seldom dangerous, because it is so easily defeated by our immune system.[i] Their pneumonia was linked to an unexplained weakness in their bodies’ immune defenses. All five men were MSMs, and one was also an IDU. One month later, in July 1981, doctors in New York and California reported 30 more MSMs with unusual infections, including Kaposi’s sarcoma, severe and persistent herpes sores, and several fungal infections.[ii]

Before 1981, very likely thousands of people in Africa and scores in Europe, the US, and Haiti had already died from AIDS. Some of those cases had been recognized as unusual, but then set aside as singular and unexplained events. Clusters of cases among MSMs finally called attention to the disease.

 

Suspecting a new virus that spreads like the hepatitis B virus      

 

In response to these reports, the US CDC established the Kaposi’s Sarcoma and Opportunistic Infections Task Force to monitor the explosion of unusual cases and to figure out what was happening. In July 1981, CDC advised doctors to ‘be alert for Kaposi’s sarcoma, PC [Pneumocystis carinii] pneumonia, and other opportunistic infections associated with immunosuppression in homosexual men.’[iii]

Early guesses about the cause of immune system defects in MSMs included an inhaled drug (amyl nitrates) that enhanced orgasms, and cytomegalovirus, a common and normally inoffensive virus. Those were some of the less threatening ideas. The scary option, recognized almost immediately,[iv] was that the immune defects might be due to a previously unknown virus that had begun to circulate among MSMs, and which might transmit among others as well.

In December 1981, doctors in the US reported similar symptoms – rare infections and immune defects – in IDUs.[v] Seven months later, in July 1982, CDC reported similar symptoms in three hemophiliacs who had injected factor VIII to stop bleeding.[vi] From the mid-1970s treatment for hemophilia had progressively shifted to a more concentrated, freeze-dried form of factor VIII produced from plasma pooled from thousands of donors – a process which also pooled contaminating viruses. To preserve factor VIII activity, the product was not treated to kill viruses. The introduction of factor VIII from pooled plasma put hemophiliacs in the front lines to identify new bloodborne viruses that might enter the population.

According to Curran, who led CDC’s task force on Kaposi’s Sarcoma and Opportunistic Infections,[vii]

 

The lack of consensus regarding the cause continued until July 1982…The sudden occurrence of a new syndrome that affected primarily these three distinct populations [MSMs, IDUs, and hemophiliacs] who shared only their susceptibility to hepatitis B, convinced many investigators that a transmissible agent was the primary factor responsible for the immunologic defects characteristic of AIDS.

 

In mid-1982, CDC scientists named the new disease acquired immune deficiency syndrome (AIDS). The view that AIDS was caused by a bloodborne virus – like the hepatitis B virus – gained further support in December 1982 when CDC reported AIDS in an infant 20 months old who had received blood from a man who later developed AIDS.[viii] The parallel with hepatitis B was ominous. If the suspected infectious agent that caused AIDS passed from person to person like the hepatitis B virus, then MSMs and IDUs in rich countries represented only a small portion of the world’s population that was at risk for AIDS.

 

Recognizing AIDS in Haiti and Africa    

 

In late 1981, doctors in Miami and New York alerted CDC to Haitians with symptoms similar to what doctors were finding in MSMs.[ix] In early 1982, doctors in Haiti reported 11 men with aggressive Kaposi’s sarcoma, noting later that ‘Drugs and homosexuality have no importance’ in Haitian cases.[x] In July 1982, CDC reported AIDS in 34 Haitians in the US, including 4 women and 30 men.[xi] None of the 30 men reported sex with men, and only one acknowledged IDU risks. Another early report on AIDS in Haitians noted,[xii]

 

An interesting common epidemiologic feature linking the Haitians, homosexuals, intravenous-drug abusers, and hemophiliacs is a high incidence of hepatitis B viral markers [i.e., hepatitis B antigens or antibodies in their blood]. About 86 per cent of Haitians reportedly have one or more serologic markers of hepatitis B infection…

 

In late 1981, doctors in Belgium and France began to realize that they had already seen AIDS in patients from Africa.[xiii] According to Jacques Leibowitch, a prominent French doctor, ‘From January 1982, French experience with AIDS included Africa as one of the foci of the disease.’[xiv] Through the end of 1984, doctors in Europe – primarily in France and Belgium – diagnosed AIDS in 111 Africans.[xv] Most cases came from DRC (74 cases), Congo (12 cases), and adjacent countries in Central and East Africa, including Cameroon, Gabon, CAR, Chad, Burundi, Rwanda, Uganda, and Zambia (1-3 cases each). A 1984 report on 23 Africans – 14 men and 9 women – diagnosed with AIDS or AIDS-related symptoms in Belgium noted that most had evidence of past or current infection with hepatitis B. The authors reasoned that ‘Since the distribution of AIDS seems to be parallel with that of hepatitis B viral infection, one may expect an extension of the syndrome in Central Africa.’[xvi]

In October 1983, the US National Institutes of Health sent a team of US and European scientists to Kinshasa, DRC, to look for AIDS cases. In three weeks, the team identified 38 patients (20 men and 18 women) with AIDS in four hospitals. Diagnoses were based on symptoms and on tests showing immune system defects. No patients reported MSM or IDU risks. The study team found that injections were common, and were ‘often given with unsterilized needles or syringes.’ Even so, the team reported a ‘strong indication of heterosexual transmission.’[xvii]

Also in October 1983, another team of European scientists funded by the Belgian government asked doctors at Rwanda’s premier hospital, the Centre Hospitalier de Kigali, to identify AIDS cases. This approach identified 26 patients – 17 men, 7 women, and 2 children – with AIDS. Noting that 11 of 17 men with AIDS frequented prostitutes, and that 3 of 7 women were prostitutes, the team speculated that ‘heterosexual promiscuity, and contact with prostitutes could be risk factors for African AIDS.’ The team also noted that ‘Poor hygiene during medical procedures might also play an important role in the transmission of a blood-borne agent.’[xviii]

 

Two epidemic patterns

 

Early views of the AIDS epidemic suffered from understandable confusions. Initially, public health officials did not realize the full range of symptoms associated with AIDS. The reported sudden upsurge of AIDS cases in the US, Europe, Haiti, and Africa around 1980 is almost certainly due in part to a lot of unrecognized and unreported cases in the 1970s. Doctors may have forgotten AIDS-related symptoms in patients seen before 1981. Even when doctors remembered, they may have been loath to associate their clinics or their patients who had died with AIDS to a stigmatized high risk group.

Not being able to test for the infection made it hard to measure the spread of the epidemic. From people who had donated or received blood and then gone on to develop AIDS or pre-AIDS symptoms, scientists could see that people were infected for some time before they developed symptoms. But without knowing the length of the latency period (the time from infection to symptoms) it was difficult to estimate how many were infected. If AIDS cases were the tip of the iceberg, a longer latency period meant there was a bigger, hidden iceberg. One study in 1984 estimated an average latency period of 10.5 months.[xix] This was far from the true period, which is closer to 10 years. Also, because of the latency period, it was not possible from the absence of AIDS cases in a city or population to say the epidemic had not already reached there.

Even so, by observing the distribution of AIDS cases, public health experts were able to trace the spread of the infectious agent across countries and to determine some of the important risks. Through December 1984, 33 countries – 15 in the Americas, 17 in Europe, and Australia – reported a cumulative total of almost 10,000 AIDS cases to the WHO.[xx] The US accounted for more than 80 percent of these cases. Although doctors had seen many Africans with AIDS, no African government reported any AIDS cases to WHO through the end of 1984.

 

Concentrated epidemics with identified risks 

 

In the US through December 1984, CDC reported more than 14 men for every woman with AIDS, and 93 percent of cases were MSMs or IDUs. At the same time, CDC identified ‘heterosexual contact’ with ‘a person with AIDS or at risk for AIDS,’ such as an MSM or IDU, as the risk for 5 men and 54 women – less than 1 percent of AIDS cases.[xxi] Similarly, in Europe through December 1984, 92 percent of AIDS cases were MSMs, IDUs, hemophiliacs, or recipients of blood transfusions (setting aside Africans and Haitians diagnosed in Europe).[xxii]

Even before scientists had found the pathogen that caused AIDS, the most important risks in concentrated epidemics were pretty well understood. Whatever caused AIDS passed – like the hepatitis B virus – through anal sex among MSMs and through blood when IDUs shared injection equipment.

 

Generalized epidemics with undetermined risks        

 

On the other hand, AIDS in Haiti and Africa did not concentrate in MSMs and IDUs, but was found in men and women in the general population. This distribution of AIDS cases posed the question: what proportion of cases was from heterosexual exposures, and what proportion was from blood exposures?

Some experts jumped to conclusions from insufficient evidence. Peter Piot, the leader of the team that went to Kinshasa in 1983 to look for AIDS cases, recounted his thoughts on visiting Mama Yemo Hospital: ‘And then I knew what it was. I said, “Aha, this is bad news. It must be heterosexual,” because there were more women than men.’[xxiii] Similarly, Joe McCormick, who organized the team, remembered:[xxiv]

 

The major insight was – and this was the substance of a substantial discussion when I got back – the major insight was that there was an equal ratio of male to female cases. It was very clear from this that we were looking at heterosexual transmission…This was a real revelation.

 

Whether their conclusion was right or wrong was one matter. But their logic was clearly wrong. Whatever caused the AIDS cases they saw could not be inferred from the sex ratio. Many diseases that afflict men and women equally, such as colds and influenza, are not sexually transmitted.

Others remained unconvinced that sex could account for most AIDS cases in Africa and Haiti. In November 1983, WHO organized an international meeting of experts ‘to assess the present situation of AIDS’ and to help countries to work together to address the epidemic. The memorandum from the meeting recognized that ‘Spouses of AIDS patients have also been shown to be at an increased risk…’ but was cautious in attributing AIDS to heterosexual promiscuity. ‘Whether persons with multiple heterosexual sex partners are at greater risk of acquiring AIDS is unknown…’ The memorandum speculated that ‘injections with unsterile needles and syringes may play a role’ in tropical countries.[xxv] One of several recommendations to prevent AIDS urged training medical staff to use only sterilized syringes and needles.

 

Different responses to suspected risks in blood exposures   

 

Countries with concentrated epidemics

 

In November 1982, even before scientists had found the virus that caused AIDS, CDC advised medical staff to avoid needlestick accidents and to wear gloves and other protective clothing when working with suspected AIDS patients.[xxvi] To prevent patient-to-patient transmission of whatever caused AIDS, CDC recommended existing practices to prevent patient-to-patient transmission of hepatitis B virus – such as autoclaving (boiling or steaming under pressure) or discarding invasive equipment after use. During the 1980s and later, autoclaving instruments, wearing protective gear, and other infection control practices to protect patients and healthcare workers from HIV and other pathogens have been collectively identified as ‘universal precautions,’ and later ‘standard precautions.’

CDC, which is an agency of the US central government, did not (and does not) have the authority to require public and private healthcare providers throughout the US to follow its recommendations. CDC’s recommendations had impact in the US and in other countries because they influenced ideas about what were acceptably safe practices. In some cases, other central or sub-national government agencies which funded or regulated healthcare institutions adopted CDC’s recommendations into their regulations.

Healthcare providers in rich countries are subject to public and in some cases private licenses, certification, and inspections. Providers are alert to mistakes and to complaints from patients because failure to respond could lead to loss of licenses or accreditation, and thus loss of income, and to civil suits by patients and/or their families. In addition, prosecutors for national or sub-national governments can charge regulators and inspectors as well as providers with crimes ranging from carelessness to murder if they allow or provide healthcare that does not meet accepted safety standards. On a case-by-case basis, courts – judges and juries – decide what are accepted standards. CDC’s recommendations influence court decisions.

While healthcare regulators and providers in rich countries followed CDC’s advice to strengthen infection control practices in response to the suspected new virus, they rejected CDC’s advice to protect recipients of blood transfusions and blood products. During 1982, doctors in the US identified AIDS in one recipient of a blood transfusion and in six hemophiliacs who had received blood products. In January 1983, CDC scientists met with representatives of the US blood industry along with staff of the Food and Drug Administration (the government agency that regulates the blood industry) to discuss steps to protect recipients of blood and blood products.[xxvii]

Because there was as yet no test for the suspected AIDS virus, CDC scientists urged organizations that collected blood and plasma to turn away donors who were at high risk for AIDS, primarily MSMs and IDUs, or to test donors not only for current hepatitis B infection, but also for prior infection (i.e., for antibodies that persist after people have defeated the virus). Antibodies showing prior hepatitis B infection were found in about 80 percent of AIDS cases and members of high-risk groups, but in only about 5 percent of other Americans. Regulators and representatives of the blood industry rejected both options, citing costs and opposing CDC’s conjecture that whatever caused AIDS passed through blood. The meeting ended with no agreement.

Don Francis, who participated in the meeting as a CDC scientist, considered that failure to protect the blood supply at that time ‘killed tens of thousands of hemophiliacs and transfusion recipients in the United States and around the world.’ He attributed the failure to ‘laziness, profit motive and this incredible inertia that some groups have to not change.’ Producing clotting factor for hemophiliacs[xxviii]

 

…was a commercial enterprise, and they had their collection facilities in impoverished parts of the world, collecting material they shouldn’t have, and wanted to deny there was any risk… But that’s understandable in a way, a nasty, evil profit motive.

…the blood banks were these…supposedly nonprofit organizations for the public good who were, from CDC’s standpoint, killing people just because they didn’t want to change their procedures…

 

In March 1983, the Food and Drug Administration called for self-deferral, recommending that members of high-risk groups not donate blood or plasma.[xxix] For almost two years, the US government relied on this weak recommendation to keep HIV out of blood and blood products. From early 1985, as soon as tests for HIV infection were available in sufficient quantities, the Food and Drug Administration mandated testing all blood and blood products for HIV antibodies.[xxx] Most other rich countries started testing all blood and blood products in the last half of 1985.

Between 1983 to 1985, contaminated blood and blood products produced in the US and Europe infected thousands of patients and hemophiliacs throughout the world. Even after 1985, contaminated blood products continued to infect hemophiliacs as blood industry managers and regulators overlooked evidence for the continuing presence of HIV.

The public and government response to these infections in a number of rich countries illustrates the role of the courts in protecting patients, even against regulators. During the 1990s, courts in France, Germany, Switzerland, and Japan convicted 16 blood industry managers and regulators of crimes ranging from ‘endangering the safety of patients’ and ‘professional negligence’ to poisoning, manslaughter, and murder.[xxxi] More than 20 governments have arranged to pay compensation to people infected with HIV through blood or blood products. 

           

Countries with generalized epidemics 

 

At the beginning of the 1980s, public health managers and healthcare providers in Africa and Haiti had been careless for decades about minor blood exposures. Thus, the threat to the public to contract AIDS from blood exposures was not only much greater than in the US and Europe, but that threat could also not be addressed by tweaking the existing system. When scientists deduced in mid-1982 that a bloodborne pathogen caused AIDS, public health managers in Africa and Haiti did not immediately address routine lapses in infection control. This continued their pattern of deficient responses to evidence that reusing syringes and needles without sterilization led to jaundice (from the 1940s), to surveys showing high prevalence of hepatitis B infection in Africa (from the late 1960s), and to terrifying outbreaks of Ebola hemorrhagic fever (from 1976).

 

Finding HIV, developing tests                 

 

In January 1983, Luc Montagnier and Francoise Barre-Sinoussi with a group of French scientists succeeded in isolating and growing the virus that caused AIDS in a cell culture. In February, they photographed it with an electron microscope. In May 1983, less than two years after AIDS had been recognized as a new disease, French scientists reported the discovery of what they suspected to be – and which was – the virus that caused AIDS.[xxxii]  Because they had grown their virus from an MSM with swollen lymph nodes (a common precursor to full-blown AIDS) they named it the lymphadenopathy associated virus, or LAV.

In April 1984, almost a year after the French team had published its results, Robert Gallo and a group of US scientists claimed to have discovered the virus that caused AIDS, and named it human T-lymphotropic virus type III (HTLV-III).[xxxiii] In August 1984, Jay Levy and a third group of scientists announced they had isolated a virus from AIDS patients in California and gave it a third name, AIDS-associated retrovirus (ARV).[xxxiv] Subsequently, in a compromise between French and US scientists, LAV was renamed the human immunodeficiency virus, or HIV.

Despite some initial confusion, US as well as French laboratories from late 1983 were working with the right virus. Scientists competed to develop tests to identify the presence of the virus and of antibodies to the virus. Researchers were able to test limited numbers of individuals for HIV infection from 1984. In early 1985, several companies put test kits on the market.

The availability of tests for HIV infection led to safer blood transfusions, allowed people to see who was infected, and facilitated research into the risks for AIDS. Two important first challenges were to map the spread of HIV infection in Africa, and to determine what proportion of infections in Africa and Haiti could be traced to sex, and what proportion was due to unsafe medical injections and other blood exposures.

 



[i] Gottleib MS, Schanker HM, Fan PT, et al. Pneumocystis pneumonia – Los Angeles’, MMWR, 1981, 30: 250-2. The bacterium that caused pneumonia was first identified as Pneumocystis carinii, but is now recognized as P. jirovecii. See: Morris A, Lundgren JD, Masur H, et al. ‘Current epidemiology of Pneumocystis pneumonia’, Emerg Infect Dis, 2004, 10: 1713-19.

[ii] Friedman-Kien A, Laubenstein L, Marmor M, et al. ‘Kaposi’s sarcoma and Pneumocystis pneumonia among homosexual men – New York City and California’, MMWR, 1981, 30: 305-8.

[iii] Ibid. p. 307.

[iv] Shilts R. And the Band Played On. New York: St. Martin’s, 2000. p. 73.

[v] Masur H, Michelis MA, Greene JB, et al. ‘An outbreak of community-acquired Pneumocystis carinii pneumonia: Initial manifestation of cellular immune dysfunction’, N Eng J Med, 1981, 305: 1431-8.

[vi]Pneumocystis carinii pneumonia among persons with hemophilia A’, MMWR, 1982, 31: 365-7.

[vii] Curran JW. ‘AIDS – Two years later’, N Eng J Med, 1983, 309: 609-11. p. 609.

[viii] Ammann A, Cowan M, Ware D, et al. ‘Possible transfusion-associated acquired immune deficiency syndrome (AIDS) – California’, MMWR, 1982, 31: 652-4.

[ix] Garrett L. The Coming Plague. New York: Penguin, 1995. pp. 307-8.

[x] Liautaud B, Laroche C, Duvivier J, et al. ‘Le sarcoma de Kaposi en Haiti: foyer meconnu ou recemment apparu?’, Ann Dermatol Venereol, 1983, 110: 213-19. p. 213.

[xi] Hensley GT, Moskowitz LB, Pitchenik AE, et al. ‘Opportunistic infections and Kaposi’s sarcoma among Haitians in the United States’, MMWR, 1982, 31: 353-4, 360-1.

[xii] Vieira J, Frank E, Spira TJ, et al. ‘Acquired immune deficiency in Haitians: opportunistic infections in previously healthy Haitian immigrants’, N Eng J Med, 1982, 308: 125-9. p. 128.

[xiii] Garrett L. The Coming Plague. pp. 290-291; Shilts R. And the Band Played On. p. 102.

[xiv] Leibowitch J. Un virus etrange venu d’ailleurs. Paris: Bernard Grasset, 1984. p. 50. Gisselquist translated the quote.

[xv] Brunet JB, Ancelle RA. ‘The international occurrence of the acquired immune deficiency syndrome’, Ann Internal Med, 1985, 103: 670-4.

[xvi] Clumeck N, Sonnet J, Taelman H, et al. ‘Acquired immunodeficiency syndrome in African patients’, N Eng J Med, 1984, 310: 492-7. p. 496.

[xvii] Piot P, Quinn TC, Taelman H, et al. ‘Acquired immunodeficiency syndrome in a heterosexual population in Zaire’, Lancet, 1984, ii: 65-9. p. 68.

[xviii] Van de Perre P, Rouvroy D, Lepage P, et al. ‘Acquired immunodeficiency syndrome in Rwanda’, Lancet, 1984, ii: 62-5. p. 65.

[xix] Auerbach DM, Darrow WW, Jaffe HW, et al. ‘Cluster of cases of the acquired immune deficiency syndrome. Patients linked by sexual contact’, Am J Med, 1984, 76: 487-92.

[xx] Brunet JB, Ancelle RA. ‘The international occurrence’.

[xxi] CDC. ‘Acquired immunodeficiency syndrome (AIDS) weekly surveillance report – United States, 31 December 1984’, Atlanta: CDC, no date. Available at: http://www.cdc.gov/hiv/topics/surveillance/resources/reports/past.htm (accessed 10 September 2006).

[xxii] Brunet JB, Ancelle RA. ‘The international occurrence’.

[xxiii] Public Broadcasting Service. ‘Frontline: The age of AIDS: Interview with Peter Piot’. Posted May 2006. Available at:

http://www.pbs.org/wgbh/pages/frontline/aids/interviews/piot.html (accessed 20 December 2006).

[xxiv] Public Broadcasting Service. ‘Frontline: The age of AIDS: Interview with Joe McCormick.’ Posted May 2006. Available at:

http://www.pbs.org/wgbh/pages/frontline/aids/interviews/mccormick.html (accessed 17 October 2007).

[xxv] ‘Acquired immunodeficiency syndrome – An assessment of the present situation in the world: memorandum from a WHO meeting’, Bull WHO, 1984, 62: 419-32. pp. 419, 425.

[xxvi] CDC. ‘Acquired immune deficiency syndrome (AIDS): Precautions for clinical and laboratory staff’, MMWR, 1982, 31: 577-80.

[xxvii] Shilts R. And the Band Played On. pp. 220-4.

[xxviii] Public Broadcasting Service. ‘The age of AIDS: Interview with Don Francis.’ Posted May 2006. Available at:

http://www.pbs.org/wgbh/pages/frontline/aids/interviews/francis.html (accessed 17 October 2007).

[xxix] CDC. ‘Prevention of acquired immune deficiency syndrome (AIDS): Report of inter-agency recommendations’, MMWR, 1983, 32: 101-3.

[xxx] CDC. ‘Provisional public health service inter-agency recommendations for screening donated blood and plasma for antibody to the virus causing acquired immunodeficiency syndrome’, MMWR, 1985, 34: 1-5.

[xxxi] Weinberg PD, Hounshell J, Sherman LA, et al. ‘Legal, financial, and public health consequences of HIV contamination of blood and blood products in the 1980s and 1990s’, Ann Intern Med, 2002, 136: 312-19.

[xxxii] Barre-Sinoussi F, Chermann JC, Rey F, et al. ‘Isolation of a T-lymphotrophic retrovirus from a patient at risk for acquired immune deficiency syndrome (AIDS)’, Science, 1983, 220: 868-71.

[xxxiii] Gallo RC, Salahuddin SZ, Popovic M, et al. ‘Frequent detection and isolation of cytopathic retroviruses (HTLV-III) from patients with AIDS and at risk for AIDS’, Science, 1984, 224: 500-3.

[xxxiv] Levy JA, Hoffman AD, Kramer SM, et al. ’Isolation of lymphocytopathic retroviruses from San Francisco patients with AIDS’, Science, 1984, 225: 840-2.