Ebola and Denial in Liberia

Today a clinic in Liberia that cares for Ebola patients was overrun. The looters even stole a bloodied mattress, while patients left the facility. Everyone receiving care at the center had tested positive for Ebola, and seventeen of them had disappeared after this tumult. According to Elise Zoker and Caroline Chen’s piece in the Sydney Morning Herald, one of the attackers said that they did not believe in “this Ebola outbreak.” To many readers, it may seem inconceivable that people would choose to take people infected with a deadly and communicable disease back to their families or neighborhoods. It’s perhaps equally unthinkable that people would walk unprotected through a facility drenched in a virus so deadly that it should be contained in a biohazard level four facility, and then take an item soaked in the blood of an Ebola patient. But such strange behavior is not new; denial has always been a part of major disease outbreaks. When I read this news, it reminded me of the early history of HIV.

I wrote a history of HIV and AIDS in Latin America. As part of the research, I interviewed people living with HIV, doctors, the heads of NGOs, drug traffickers and users, sex workers, transvestites, and nurses. I did fieldwork in Brazil, Cuba and Mexico, and researched deeply about the epidemic’s history in other Latin American nations. One of the aspects of the epidemic that most struck me during my research was the extent of the denial that surrounded it. Early in the history of the epidemic, authorities from one end of Latin America to another predicted that the epidemic would remain confined to the United States. Castro said that the disease reflected the drug use and family breakdown of modern capitalism in the United States. A Chilean doctor said that the Andes represented too formidable barrier for the disease to overcome. In Mexico, another doctor said that Mexicans’ immune systems were primed by their frequent exposure to germs, which would keep them from acquiring virus. People so associated the virus with the United States that when the first cases appeared in Brazil, newspaper headlines asked “are we modern enough to have AIDS?”

This denial manifested itself in many different ways. In Cuba, young men called roqueros deliberately infected themselves with HIV tainted blood, mainly during the period from the late 1980s to 1992. The reasons for their decisions were complex. For many it was an act of political protest. For others, the idea of quarantine -in a place with ice cream and color television- seemed attractive. But it was also the case that many of these young men were in denial, and did not truly believe that they would die from the virus. The Americans would soon find a vaccine. When that did not happen -and they began to see people dying of AIDS- the movement died out. But elsewhere HIV denialism was picking up steam.

In South Africa the government doubted that HIV caused AIDS, perhaps in part because of the influence of one faculty member in California, who argued that AIDS was caused by other factors, including drug use. While this argument also caused HIV patients to stop taking their medications in developed countries (see this heart-breaking article in the Guardian) nowhere did his ideas have more impact than in South Africa. President Thabo Mbeki decided not to prioritize medications for people living with HIV. According to one 2008 study, this may have led to over 300,000 premature deaths. The people who made this decision in South Africa were educated and intelligent. And yet they chose a public policy that was catastrophic.

I had my own experience with HIV denialists. When I taught a class on HIV/AIDS in the past, there would always be at least one person in the class who did not believe that HIV caused the disease. I would attempt to reason with them, talking about the evidence that the disorder was transmissible, the effectiveness of medications, the ability of condoms to reduce transmission, but it was no use. At one point, one of the brightest undergraduate students that I had ever known was working for me as a research assistant on my book. They had already completed some excellent work before I learned that -despite their presence in my class, and their extensive reading on the topic- they did not believe that HIV caused AIDS. When we discussed the issue, I soon realized that we were approaching the topic from such radically different paradigms that we were unlikely to agree even on what constituted evidence. They continued to work with me, and to help me gather key material for my book. HIV denial was not confined to those infected with the virus. Fortunately, this movement seems to have died out over the last ten years, and I no longer hear these arguments in my classes.

More recently, the 2009 outbreak of H1N1 saw a flurry of articles in alternative media -Twitter, Youtube, and blog posts- that denied that the outbreak was real, and argued that pharmaceutical companies were manufacturing the crisis to sell drugs. Other people warned about the dangers of flu vaccine. While all vaccines have risks -an Australian influenza vaccine from 2010 caused an increased risk of febrile seizures– the epidemic was real, although the mortality rate was thankfully low.

For all these reasons, one can understand why people might make disastrous choices in Liberia. They see people being taken into clinics, but very few survivors emerging. They have no personal knowledge of the disease. The people issuing the warnings are often foreigners. There is a widespread sense of fear, and people are terrified that their family members will not return to them. Peter Piot’s wonderful book, No Time to Lose describes his experiences fighting an earlier outbreak of Ebola, and the terror that surrounded it. The current outbreak is even worse than the one that he faced. Tonight my thoughts are with all of the health workers -both foreign and West African- who are working to contain this outbreak, and I want to offer my deepest thanks and respect.

If you are interested in reading more about conspiracy theories and epidemics, please read my article on the 2009 influenza pandemic.

Shawn Smallman, Portland State University