When we look away, the AIDS case

How many people need to die before we understand that facts are not enough? One? Ten? A thousand? This is a blunt question to draw attention to the failure in facts alone, even when lives are at stake. Understanding something is, at best, a step in the right direction, but then we must see how to use that vantage point to solve the issue. For example, when there is an accident in aviation, there’s a committee that investigates to understand how it happened. They spend a great deal of time using many scientific, technological, mathematical, and engineering tools to precisely understand the failure. Once the process ends, they have the facts. Once those are clear, there is another process that ensures it will not happen again. Protocols are changed, new safety harnesses are implemented, policies are changed… as a result, it is rare to see the same type of failure happen again. Air travel gets safer, and we move on with better systems and machines.

The appearance of HIV and AIDS in the USA offers a painful case where we were unable to link facts with action. Where what we called science painfully proved to be not enough; our science ecosystem proved clumsy and ill-judged to get beyond the understanding phase, much less to leverage that understanding to save lives across the world, which is arguably more important.

Even today, how much does the average person know about the disease? HIV, or Human Immunodeficiency Virus, attacks the body’s immune system, eventually destroying its defense mechanisms against even minor infections. This health condition is still seen with stigma by many, associated perhaps with risky or immoral behavior. There is also misunderstanding about its transmission. Today, while there is no cure, through consistent and sustained treatment, a person living with HIV can achieve a level of virus in their body that is undetectable by most standardized blood tests. At this point, it becomes virtually impossible to spread the virus and an individual can reach a life expectancy approaching that of the general population. When left untreated, the HIV infection can lead to AIDS disease, or Acquired Immune Deficiency Syndrome, which is fatal.

HIV is now known to have come from Africa, probably around present-day Kinshasa, Democratic Republic of Congo. It was probably the combination of the colonialism that brought development and an influx of foreign workers. Prostitution and sexually transmitted diseases helped transmit the original infection around the 1920s, probably from the bite, or meat, of a simian infected with the virus where HIV mutated from. With a long incubation period of a decade, and during which one can transmit the disease, the virus silently spread below the medical radar for years. It is suspected to have traveled far via expat workers. For example, it probably arrived in Haiti around 1966 or earlier. In Norway, in 1976 a sailor, his wife, and one of his daughters died from the HIV he contracted while sailing in Africa years prior. In 1977, a Danish physician died from AIDS after having worked in Zaire for years.

In the early decades, HIV hit most sub-Saharan Africa, but the USA in particular saw a rapid growth and spread, particularly among homosexuals. There are several hypotheses for this. Some factors include that Port-au-Prince, the capital of Haiti, was a popular cruise gay destination for Americans. Studies of those times estimate several factors conflating on the spread of this epidemic in the gay community: an average of twelve different sexual partners per person per year, the high rate of infection with gay sex, and the coincidence with a nascent liberation and concentration of gay communities, especially in San Francisco and New York. Intravenous drug users were also hit hard with a high rate of infection by the practice of sharing needles. Many European countries had public health policies such as programs to offer needle exchanges, while the USA mostly deferred action nor acknowledged awareness[i]. Eventually, the general population outside these high-risk areas were affected. Mothers passed HIV to their babies, the blood bank supply—without capacity to detect the problem—got infected from affected donors, and then passed it on to people that underwent medical operations. Hemophiliacs (people with limited ability to stop bleeding when cut) were a special case. At the time, a new life-saving product, ‘Factor VIII’, was invented by which they could have almost normal lives if they received regular transfusions. This Factor VIII was produced from donor blood. Every person with HIV that donated blood contaminated the doses for several people’s worth of Factor VIII. 10,000 people are estimated to have received HIV from this source alone[ii].

Unfortunately, it took many years to acknowledge the nature of the pandemic, to discover the virus, and to develop the type of lifesaving treatment individuals living with HIV have today. When the virus appeared in the United States during the early ’80s, it was not well understood and was dubbed the “gay plague,” as the homosexual community was first seeing the most cases. With rampant social stigma and discrimination against the homosexuals, the matter was not taken seriously.

 The purposeful avoidance of a focus to find a treatment for the devastating illness may have hindered understanding on how it spread. It shouldn’t have taken so long. As early as 1982, researchers knew there was something in the blood bank supply that was causing individuals to acquire AIDS later on. Early that year, the CDC, Center for Disease Control and Prevention in Atlanta, Georgia (the highest U.S. public health authority) had the facts: AIDS was a mortal disease that was spreading at alarming rates and had been proven to be transmitted through blood and sexual contact, including via products for hemophiliacs.

Unfortunately, 1982 is also the same year of a now infamous recording at a White House press briefing. President Ronald Reagan’s Press Secretary, Larry Speakes, mocked a journalist for being interested in how the White House was addressing the spread of the then-dubbed “gay cancer” or “gay plague.”[iii] At the time, the disease was seen as a joke to those in power, who threw innuendos and insults at the problem. And so, for several years, HIV remained mostly unspoken, unaddressed; yet spreading across people. Discrimination won out. Bureaucratic and political red tape and economic interests trumped public safety, while jokes were made at the highest policy levels. Research funds and scientists were disincentivized from dedicating themselves to this taboo topic. [iv]New cases were mounting at exponential rates, and now via blood transfusions to the general population from infected donors. Then, it became more broadly known as an important public health issue, since it was affecting a wider population. The public stance changed, but no new funding was made available.

In 1985 the director of the CDC laboratory dedicated to this new epidemic, Don Francis, drafted the first plan. Don is an epidemiologist who had worked on containing the cholera epidemic in Nigeria in the early 1970s, the smallpox epidemic in Yugoslavia in 1972, and the 1976 Ebola epidemic in Sudan. He understood the severity of the situation and the expensive cost of a program that could work to prevent even more deaths. He also understood the even higher cost, economically and in lives lost, of not addressing the epidemic with full force as soon as possible. His proposal, called “Operation AIDS Control” asked for $40 million per year (~$100 million adjusted for inflation), educational programs for gays on safe sexual relations, for drug users on safer practices, clinics, research, and an unequivocal political public acceptance of the crisis. Not only was it denied, but the response was to “look pretty and do as little as you can.” In fact, Don’s boss, the Director of the CDC and medical doctor James Mason, was part of an administration than wanted as little new funding and talks about the gay disease as possible. Years later, in 1992, at a conference where Mason was defending from criticism by experts that the government’s AIDS campaign was too vague and ineffective, he also stated that “there are certain areas which, when the goals of science collide with moral and ethical judgment, science has to take a timeout.” Before joining the CDC, from 1970 to 1975, Mason had been the director of the hospital services of the Mormon church, whose faith forbids same-sex sexual behavior. After the CDC, Mason, from 1994 to 2000, served at the general authority of the Mormon church, the “Second Quorum of the Seventy.” It is fair to say that Dr. Mason had pressures from many sides. From the administration he believed in, from his culture and faith, and from his scientific and operational training in public health.

At the same time, prominently in San Francisco, activists, leaders of the gay community, and scientists collided with heated arguments on how to deal with the spreading epidemic. Some of the scientific recommendations wanted to close bathhouses, interview, record, and test whole communities, and promoted avoiding gay sex until more research could inform how to have safe sex. On the other side, gay business owners and community leaders wanted to protect their culture and personal freedom of the liberties they had just won[v].

As pressure to investigate the epidemic mounted on top of the rapid increase of deaths and new infections, the incentives swung to the other side, and competition among researchers for patents and name recognition caused further delays. It was clear that a Nobel Prize was at stake. This competition included suppression of data and a reluctance to share data, isolated virus strains or protocols that could give the competing teams competitive advantage[vi]. Meanwhile, the facts were clear: people were continuing to be infected and the deaths kept rising.

So, how many people needed to die before the facts were acted upon? It was not until 1985 when blood testing was finally introduced based on scientific recommendations. At least 7,000 people had already died, and many more became infected of an incurable virus before we started to implement the scientific recommendations that experts had called for. Being an infectious disease, the direct and indirect infections from the delaying action had an exponential effect. As described by San Francisco Chronicle journalist Randy Shilts in his book And the Band Played On, the AIDS crisis marks a very painful moment in science history. Facts were mounting on the spread of the disease. And it had been spreading not only among stigmatized or marginalized individuals such as the gay and drug using communities, but also among infants, children, and adults who had received blood transfusions during surgical operations, or hemophiliacs requiring regular transfusions. Public perception grew alongside new cases, and it was also accelerated whenever a celebrity like a famous actor or singer declared they were infected. People like Rock Hudson, an American actor who died in 1985, and who was a personal friend of the USA president. This was not an invisible unexpected “black swan” of later consequences, but a huge obvious “Grey Rhino”: it was a very visible problem coming in fast, which many in positions of power or influence refused to react to. The science was clear, but experts were just not getting through.

Fate had it that AZT, the first treatment approved in 1987 for HIV, was actually discovered in 1964 but shelved since it proved inert on the mice cancer it was researched for. Not until 1985 it got picked up as a potential treatment based on the overlap between HIV research and the AZT research decades earlier.

It would be too easy to claim that politicians should have listened more to the scientists, and less to the for-profit interests of private blood banks. The scientific recommendations of the time required spending a lot of money to apply a test, which had proven only partially effective. It would also be too easy to say we needed louder voices and clearer messages from scientists. When I look at this crisis, my mind wanders instead towards what else the scientists could have done to understand and adapt to the challenges of the situation at hand. For example, what would have happened if years before someone with a strong impact science training would have made its way to the White House Cabinet as Scientific Advisor? What if better data collection and scientific support protocols had been in place? If famous people, not only scientists, would have spoken earlier about solving the issue? There might have been opportunities for scientists in the United States to collaborate and share information with scientists in France, who were making more progress towards a treatment for HIV. There were no incentives to maximize that. What might have happened if scientists had stepped outside of their immediate roles and dedicated more funds to a widespread communication, information sharing or ideation strategy? What if they understood how to deal with the cultural role of the gay baths when most its users and owners refused to close them, despite being at the center of the infection transmission hub? These aspects were not within the scope of their research, or communicating their research findings, but they do run parallel and are critical to deriving a positive impact from that knowledge. I do think of what needs to change in the science community, or in the role of scientists at for-profit industries, in government, in journalism, so that this doesn’t happen again. As painful as it is to acknowledge, discrimination against people who had acquired HIV or AIDS delayed progress on the disease.

Unfortunately, we don’t need to go too far back in history to find other examples of other global challenges with clear scientific underpinnings. A number of urgent global issues could be better addressed if science and scientists were more effective at moving their messaging beyond facts and figures. Scientific facts alone don‘t change the world. People change the world. People, leveraging all aspects involved, from science to culture, strategy to politics, economics to religion. We can, for example, look at climate change.

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