Francesca Tomasi received her B.A. from the University of Chicago and currently does microbiology research.
“[T]here is as yet no evidence of contagion.”
-July 3, 1981, New York Times
HIV crept into the human race decades before anyone would find it. One viral variant likely spilled over from sooty mangabey monkeys in West Africa in the 1960s; the other appeared in Central Africa in the 1930s. They lay low as a result of geographic isolation and a significantly less globalized world than the one we know today. In 1959, two men died: one was from Congo and died there. The other was a Jamaican-American shipping clerk who died in New York. In 1966, a man in Haiti became infected in what is one of the first domestically-acquired infections in the Americas. In 1975, reports of wasting and similar symptoms now associated with AIDS began coming in from Africa. It was not until a pattern of similar, rare illnesses appeared in a nation with a robust public health surveillance system that the budding epidemic would be picked up by any sort of radar.
In 1981, the CDC published its weekly Morbidity and Mortality Report. This one discussed a cluster of Pneumocystis carinii, a rare lung infection, in five previously healthy, young gay men in Los Angeles. The patients were also sick with other rare infections that the immune system should usually be able hold at bay, red flags that something was wrong with their immune systems. What at first seemed like a small series of unfortunate coincidences would turn out to be the beginning of one of the biggest – and worst – pandemics in human history. Within a day of the CDC’s report, doctors in other parts of the country, especially in New York, started describing similar cases. Opportunistic infections (infections occurring in immunocompromised individuals) were visibly on the rise, and only in homosexual men. Furthermore, an aggressive cancer known as Kaposi’s sarcoma suddenly re-emerged in homosexual men. This cancer typically had an incidence rate of less than 0.16 out of 100,000 people in the US, so its emergence in several hundred individuals within a single region was alarming. As a result, the CDC joined forces with other public health groups to establish a Kaposi’s sarcoma and Opportunistic Infection (KSOI) surveillance network. Their goal was to identify potential risk factors for these conditions and reverse whatever was causing them. On July 3, 1981, just shy of a month after the initial case reports were published, the New York Times published the first of many thousands of articles that would describe the nascent contagion: Rare Cancer Seen in 41 Homosexuals.
The New York Times’ seminal coverage of Kaposi’s sarcoma contained the very information that would eventually form the basis for the cloud of anger, hate, and fear cast over HIV/AIDS victims to this day. “…[T]here [is] no apparent danger to non-homosexuals,” one physician advised in the article, “…no cases have been reported to date outside the homosexual community or in women.” Because this “contagion” was first recognized in homosexual men, from day one it was identified as a “Gay Disease,” a devastating knockback to a global population already dealing with harsh social stigma. By 1982, half a year after Pneumocystis, Kaposi’s sarcoma, and other rare pathologies first noticeably emerged in the States, almost 300 cases of severe immunodeficiency were reported in the US. All were homosexual men, most in their thirties and forties. By mid-April in 1982, the CDC estimated that tens of thousands of individuals were affected by the disease. The term AIDS, for Acquired Immunodeficiency Syndrome, was officially coined by the CDC in September 1982 to describe a “disease at least moderately predictive of a defect in cell-mediated immunity, occurring in a person with no known case for diminished resistance to that disease.”
Suddenly, however, AIDS was no longer only infecting homosexuals. In December of 1982, the first case of AIDS in an infant was reported. The child had been the recipient of a blood transfusion. Precipitously, almost two dozen cases of “unexplained immunodeficiency and opportunistic infections in infants” were reported in another CDC Morbidity and Mortality Weekly Report. By April of the following year, the CDC had widened the AIDS-susceptible population to “homosexual men with multiple sex partners, injection drug users, Haitians, and hemophiliacs” (individuals with a rare bleeding disorder in which the blood doesn't clot normally). That same year, the deadly AIDS-causing virus HIV was discovered, albeit under the name HTLV-III/LAV (human T-cell lymphotropic virus-type III/lymphadenopathy-associated virus). The CDC quickly published a report outlining the methods for viral transmission which included sex, blood transfusions, and intravenous drug use. Direct contact, food, water, air, and contaminated surfaces were officially ruled out as transmission aids. Of course, much of the world stopped listening at “deadly virus.”
“Anger and intolerance are the enemies of correct understanding.”
– Mahatma Ghandi
In October, protests and riots that had slowly been building up gained national attention: tenants in a New York home had tried to evict a physician because he was treating AIDS patients. Citing that the tenants were “frightened of the AIDS patient,” the article goes on to say that the state repelled this move. Nonetheless, the frightening uncertainty of a new, fatal illness had started to fuel public bedlam, despite the fact that HIV had already been definitively proven as a sexually transmitted disease – mere bystanders would never be at risk of infection.
HIV spread like wildfire. By 1985, it had been reported in every region of the world. At the same time, an epidemic of discrimination was also unfolding into a pandemic. The United States military began testing all recruits for HIV and banned anyone who tested positive. Children with HIV were barred from schools. Individuals were shunned by their families, peers, and communities. Others were refused treatment. Still more lost their jobs and could not find new employment. In China, for instance, a man was refused a job as an elementary school teacher because of his positive HIV status. Now, the nation is pushing to ban health tests as prerequisite for employment. The FDA only just (December 2015) lifted its ban on homosexual men to donate blood even if they are HIV-negative. Travel and residence bans are only just beginning to be lifted; for years, individuals were forced to disclose HIV status before moving somewhere, and their travel was restricted in many parts of the world. Australia criminalized non-HIV disclosure. Countries have had to pass legislation in order to protect people from HIV shaming and bias, making it one of few infectious disease for which there are laws protecting individuals from discrimination (other protected diseases include TB and different forms of Hepatitis). Lastly, of course, there is awful psychological distress that comes with being diagnosed with a chronic, potentially fatal disease (if left untreated), and facing shame in lieu of acceptance and care.
Public misconceptions of HIV fueled the epidemic of fear alongside social stigmas associated with the sexual nature of the disease. HIV was quickly associated exclusively with controversial behaviors – homosexuality, drug use, sex work, sex in general (which is taboo in some cultures), or infidelity. Infection by HIV was a consequence of individual irresponsibility and immoral character, and AIDS was the punishment for this disgraceful behavior. For some perspective, in the year 2015, 75 countries around the world still reported homosexuality as a crime. Because of these stigmas, many people infected with HIV did not even seek treatment for fear of receiving a scarlet letter. And, of course, inaccurate information spread more quickly than HIV itself. People developed irrational misperceptions of their own personal risk of disease despite widespread PSAs about the actual routes of transmission of the disease.
Predominant modes of transmission also dictate the type and degree of stigma in different regions. For example, HIV transmission in sub-Saharan Africa is mainly driven by heterosexual sex. As a result, stigma there is not anti-IVDU or anti-homosexuality driven; rather, it is fueled by disdain for infidelity and sex work. When high-risk groups are marginalized, the effects of infection are only amplified: rather than being able to focus on prevention and treatment, groups become isolated and continue to propagate illness.
“When 'I' is replaced by 'We', illness becomes wellness.” – Shannon Alder
Stigma limits access to disease testing, treatment, and education. In fact, the World Health Organizations has stated that fears of stigma and discrimination are the number one reason individuals refuse to get tested, disclose their HIV status, or take the very effective antiretroviral drugs that exist today.
Had the individuals first infected with HIV been heterosexual, would the HIV/AIDS stigma be the same? The delicate, controversial nature of the behaviors most frequently associated with HIV infection made it pretty much impossible for HIV ever to go without stigma. Negative societal perceptions of “unconventional” behaviors such as intravenous drug use, infidelity, and sex work amplified HIV’s stigma to scales much larger than infections that are air-, insect-, or animal-borne. Furthermore, HIV and homosexuality fueled each other’s stigma as HIV was initially named a “Gay Disease,” and gay men were collectively assumed to have AIDS.
As we have discussed many times on Infective Perspective, infectious diseases have played a role in shaping society since the beginning of human history. Many other infectious diseases carry detrimental stigmas, including tuberculosis, which is now the leading cause of death in HIV-infected individuals. What the world has not realized, however, is that infectious diseases do not have to shape society exclusively in negative ways. In 1984, Secretary Margaret Heckler of the Department of Health and Human Services announced that a vaccine for HIV would hopefully be available within 2 years. 32 years later, we do not have a vaccine, but HIV is no longer a death sentence. While there is still a long way to go (read: an HIV vaccine is the holy grail of anti-HIV efforts and will ultimately help eradicate the disease), millions of people from so many different fields (medicine, research, public health, government, social activism, and so on) have come together to fight this viral beast. Mother to child transmission is preventable, and HIV-negative individuals can take prophylactic anti-retroviral drugs to prevent infection should they have sex with HIV-positive people. HIV-positive men and women can live full lives on anti-retroviral therapy that maintains a low viral count. They can get married and have children without passing their infection on to loved ones. Despite its massive social stigma, HIV has brought out the power of the human mind and global cooperation. The journey is not without its challenges and pitfalls, or conflicts and barriers, but the fact that it is a journey that has seen such staggering progress in just three decades should be a light of hope and a spark to ignite a global resolve to conquer all devastating illnesses.
“History doesn’t repeat itself, but it does rhyme.” – Mark Twain
Through travel and technology, the world will only continue to become increasingly inter-connected, creating more opportunities for major outbreaks. While we may not always be able to predict the next pandemic, we can foil stigma from the start. Public information transparency, clear communication, and an immediate focus on treatment will steer infectious diseases onto the optimist’s path. In this scenario, the world joins forces to defeat a common enemy, pouring resources into vaccines, drugs, and care for those affected by the disease. People who are not themselves infected will feel empathy for those who are. They will understand that even though they are not behaviorally at risk of contracting this particular disease, they may just as well fall into the path of the next one. On the other hand, covert investigations and the “othering” of diseases (labeling them with specific social, cultural, or geographical communities) steer pathogens down the pessimist’s path. They fuel paranoia and cynicism, hindering progress and giving pathogens exactly what they want: the chance to spread uninterrupted. In the words of infectious disease physician William Schaffner, “It's always an uncertainty. We're always at the infectious disease roulette table.” Stigma is never productive. Care and communication are.