Silence = Death: Why Scientists Need to Know the History of HIV Research

By Ayumi and Phuong

June was Pride Month, but we should take the time to stand with our LGBTQ+ communities every day! In our last post we emphasized the importance of the Black Lives Matter movement and the pervasiveness of racism in academia. The LGBTQ+ community has also undoubtedly faced pervasive discrimination in academia as well. As scientists and future doctors we need to realize that there are very damaging consequences of allowing our biases to affect individuals; we have a responsibility to check our biases. Furthermore, we need to acknowledge the damage that has been done to the LGBTQ+, and the strain that discrimination has put upon improving medical care and research in marginalized communities.

Gay-Related Immune Dificiency (GRID). Gay Plague. Gay Cancer. Gay Pneumonia.

These are a few names that HIV/AIDS used to be called. But recently, in a course where we learned about the history of HIV drug discovery, the professor did not mention GRID. They did not mention how homophobia and a blatant disregard for the suffering of fellow humans amongst scientists, medical doctors, and policy makers slowed HIV research, nor the heroic actions taken by LGBT+ activists to find a treatment. This is not the first time the dark history of HIV drug development has been skipped over in one of our science classes. We don’t hear about the ethics (or lack thereof) of early HIV research and treatment. Why is this important to discuss in a science class? Because professors have an obligation to teach future medical doctors, drug developers, public health officials, and policy makers about how our own personal biases and prejudices can literally kill people. The professor of our recent class is heavily involved in social justice work on campus, and didn’t have any ill will. Rather, this highlights a broader problem in science education--a lack of ethics training in our courses. So if our classes will not talk about this subject, we will!

Outbreak

June 5th, 1981: The Centers for Disease Control and Prevention (CDC) published an article in its Morbidity and Mortality Weekly Report on 5 cases of Pneumocystis carinii pneumonia(PCP) in young, previously healthy gay men. Doctors indicated that the patients had other signs of a weakened immune system. This is the first official reporting of what would come to be known as acquired immunodeficiency syndrome (AIDS). By time the report was published, two of these men had died and the others would soon follow. That same day, New York dermatologist Dr. Alvin Friedman-Kien called the CDC to report a cluster of Kaposi’s Sarcoma (KS) among gay men. KS is also incredibly rare and associated with a weakened immune system. By July, the CDC had released report titled “ Kaposi's Sarcoma and Pneumocystis Pneumonia Among Homosexual Men — New York City and California”. By the end of the year, there were 337 reported cases of individuals with severe immune deficiency in the United States. Of those cases, over 120 had died by December 31. Despite its high mortality rate, this disease received very little coverage from the media and public health officials. Writer Larry Kramer, the author of The Normal Heart, held a meeting in his New York City apartment to discuss the epidemic, and the men raised $6,635. This was “essentially the only new money, public or private, that will be raised to fight the epidemic for the remainder of the year”. Larry Kramer would go on to help found the Gay Men’s Health Crisis (GMHC). This community organization focused on offering information and counseling to gay men concerned about the disease, because no one in the government was going to help these men.

Compare this to the outbreak of Legionnaires disease in 1976 in which 182 people were infected and resulted in 29 deaths. Identification and research into this disease was swift and well-funded. Legionnaires disease killed mainly straight, white, elderly veterans as opposed to marginalized homosexual men. In the podcast, This Podcast Will Kill You, epidemiologists Dr. Erin Welsh and Dr. Erin Allman Updyke point out that “funding records show that the life of gay man with AIDS was worth 1/10th of the life of a straight legionnaire to those making funding decisions”.

A Scientific and Moral Failure

Homosexuality was not removed from the American Psychiatry Association’s Diagnostic and Manual until 1973, and even then, it was replaced with “sexual orientation disturbance”. Within the medical and scientific community, many still frowned upon homosexuality and treated it like a disease.

But with a new, potentially infectious disease on the world stage, there was much fame and glory to be given to whoever could isolate the cause first. Enter Robert Gallo, a scientist who studied retroviruses. Gallo strongly believed the disease was caused by a retrovirus, and so he started work on proving it. He was beat by a lab at the Pasteur Institute in France. A team led by Luc Montagnier had published a paper in Science in 1983, describing a retrovirus they called LAV (lymphadenopathy associated virus). It was found in samples of white blood cells extracted from the lymph nodes of Frederic Brugiere, a French man with AIDS. Rumors began to circulate about how Montagnier’s work was false. This important discovery was not believed until 1984, when Gallo published his own findings in Science, claiming to have discovered the virus that causes AIDS. He called this virus HTLV-IIIB, for human T-cell leukaemia/lymphoma virus type IIIB. There was a lot of infighting between American and French scientists at this point over who actually discovered the virus. In fact, French and American scientists refused to work together until the matter was sorted. It would eventually be proven that Gallo’s results were straight from Brugiere’s lymph nodes. Gallo's discovery was due to “contamination” by samples his lab had acquired from his rival's work. There is a lot that can be said about this failure by the scientists to work quickly and gracefully, so please check out This Podcast Will Kill You’s episode on HIV, titled “Apathy Will Kill You”, to learn more about the sordid details behind this scandal.

The true failure was a moral one. By the end of 1983, there were 3,064 cases of AIDS in the US- of this number, 1,292 had died. By the end of 1984, there were 7,699 cases of AIDS and 3,665 AIDS deaths in the US. While scientists were bickering over who got credit and fame, there were thousands slowly and painfully dying, without hope for a treatment. They faced a great deal of ostracization in the form of travel bans, refusal of hospital treatment, and even refusal from morgues to bury HIV positive bodies. Violence against gay men was rising. Influential figures in the government actively encouraged AIDS discrimination and stunted research into finding a cure for AIDS. North Carolina Senator Jessie Helms was one of the chief architects of AIDS-related stigma in the US and became a posterboy for homophobic politicians. He fought against any federal spending on HIV research, treatment, or prevention, blaming HIV positive patients for their own downfall. He used homophobia to justify the deaths of thousands. Under his recommendation, the CDC was prevented from spending any money on preventative measures for HIV transmission and HIV education materials were highly homophobic.

“Homosexuals and lesbians, disgusting people marching in our streets demanding all sorts of things, including the right to marry each other.” - Jessie Helms

Silence = Death

Four years after AIDS first made headlines more than 6,000 Americans had already died. Yet the budget for AIDS research was only a fraction of what the U.S. government spent on less threatening diseases, and President Ronald Reagan hadn’t even said the word ‘AIDS’ in public. It seemed like no one in the government was seriously pursuing a treatment or was publicizing the threat of AIDS.

In New York in 1987, thousands of LGBTQ+ and their supporters took matters into their own hands and formed one of the most influential patient advocacy groups in American history. They were called ACT UP: AIDS Coalition to Unleash Power. Their battle cry: Silence = Death. It was their goal to accelerate research towards a cure, and specifically, for the FDA to give AIDS patients access to experimental drugs. After hundreds of protesters stood at the FDA headquarters demanding change and providing solutions, the FDA unveiled a new policy on access to experimental drugs. ACT UP revolutionized the way that drugs were identified and tested. This included scrapping the practice of testing drugs on a small number of people over a long period of time and instead testing a huge sample of people over a much shorter period, significantly accelerating drug testing.

Among the things tested was ‘Compound S’, a repurposed version of AZT (azidothymidine), which was originally developed in the 1960s as a cancer treatment. AZT was supposed to prevent cancer cell replication, but was shelved after animal testing showed negative results. However, when AZT was applied to animal cells infected with HIV, it seemed to block the virus’ activity. Due to ACT UP’s push for the FDA to accelerate drug testing, AZT was quickly used in clinical trials. Though it did cause side effects (including severe intestinal problems, damage to the immune system, nausea, vomiting and headaches) AZT was deemed relatively safe. But the FDA also had to test the compound’s effectiveness. In order to do so, a controversial trial was launched with nearly 300 people who had been diagnosed with AIDS. The plan was to randomly assign the participants to take capsules of the agent or a placebo sugar pill for six months. Neither the doctor nor the patient would know whether they were on the drug or not. Though these efficacy tests were halted due to controversy of ethics in these studies, AZT showed strong evidence that the drug was working. With the push of ACT UP, there was finally a drug that can be used for AIDS treatment!

However, even after AZT’s approval, activists and public health officials raised concerns about the price of the drug. At about $8,000 a year (more than $17,000 in today’s dollars) — it was prohibitive to many uninsured patients and AIDS advocates accused Burroughs Wellcome, the pharmaceutical company manufacturing AZT, of exploiting a vulnerable population. On September 14, 1989, ACT UP led a rally of 350 people in front of the New York Stock Exchange, targeting Burroughs Wellcome and other companies. Demonstrators staked lawns with signs accusing pharmaceuticals of killing patients with unreasonable drug prices, set off fog horns, and dropped fake $100 bills onto the trading floor and disrupted the Stock Exchange opening bell for the first time in history. As a result of these demonstrations, Burroughs Wellcome lowered the price of AZT four days later.

Many people could not take AZT due to its toxicity, and so thousands continued to die. These activists didn’t wait around for the government to save them. When they saw how slow the government and scientists were moving, they became their own scientists, pharmacists, and physicians. They formed underground research facilities, testing drugs that were unapproved in America. In the documentary How to Survive a Plague, a former activist recalled holding journal clubs where activists would read medical and scientific literature to inform these underground experiments, as well as to better advocate for themselves. In this same documentary, Dr. Anthony Fauci (yes, THAT Dr. Anthony Fauci) described his amazement at the scientific literacy of these activists. (Note: There is so much to say about this documentary, so for the sake of time please just go watch it and/or read the book by the same title. It highlights the courageous efforts of LGBT activists during the height of the AIDS epidemic and is free on Amazon).

ACT UP has made a lasting impact on patient advocacy in government. Activists were able to force the NIH and FDA to be more transparent in their decision-making process, including activists on panels, as outside reviewers, and banning secret meetings on AIDS.

The Treatment and The Aftermath

In June of 1995, the FDA approved the first protease inhibitor, which was the turning point in the fight against AIDS. This was the first of what would become known as highly active antiretroviral therapy (HAART), and it would go on to save millions of lives. Protease inhibitors have changed an HIV diagnosis from a death sentence to a full life with medication, and they are one of the most important discoveries of the 20th century.

By this time, the AIDS epidemic had been ravaging the US and the world for well over a decade. As of October 1995, over 311,000 Americans had died and the WHO estimated that 18 million were infected with HIV worldwide, with approximately 4.5 million having developed AIDS.

While the LGBT community rejoiced, they faced a massive emotional burden, with many survivors dealing with post-traumatic stress disorder (PTSD) and survivor’s guilt. Entire communities had been wiped out by this virus. For many in these LGBT communities, their friends and neighbors were their family. Blood relatives had already disowned many for living outside the bounds of a heteronormative life, and the stigma of HIV only further ostracized them from society. One survivor recalls attending the funerals of loved ones more often than he went out to brunch, before his own diagnosis of HIV. Another survivor in this same podcast described how he can count the number of loved ones from this time that did not die of AIDS on one hand. We can only imagine the heartache and mental anguish that these survivors faced as they rebuilt their lives, with very little love and support from the general public.

Even with the advent of HAART, things are far from perfect. HAART is expensive and inaccessible to people all over the world, especially in marginalized communities and resource-poor countries. HIV continues to mutate and develop resistance to current therapies. According to the World Health Organization (WHO), there are roughly 37.9 million people with HIV worldwide, and only 23.3 million are receiving antiretroviral treatment. Those with HIV are still heavily marginalized, making diagnosis and treatment even more difficult. In 2018, almost 1 million people died of AIDS-related causes. The fight against AIDS and discrimination rages on.

Modern Discrimination in Healthcare

Though treatments are now available for HIV+ patients, there is certainly still a significant barrier of discriminatory practices against the LGBTQ+ community in healthcare. For many patients who identify as LGBTQ+, visiting the doctor can be a nerve-wracking experience as they anticipate discrimination in the form of ignorance, inappropriate questions or refusal for treatment. The 2015 U.S. Transgender Survey found that a third of transgender people who saw a health care provider in the prior year had at least one negative experience, such as being verbally harassed or refused treatment. To provide greater insight on the health and well-being of LGBTQ+ patients in healthcare, the PRIDE Study is the first large-scale longitudinal national health study of people who identify as LGBTQ+. There has been a dearth of research surrounding the LGBTQ+ experience. Results of this study will help raise awareness to doctors of specific health concerns or experiences that affect LGBTQ+ patients. The consequences of repeated discrimination in doctors’ offices can be life-threatening. "If you're never showing up to a provider's office because you're discriminated against every time you go there, then that hypertension that you have might never be diagnosed, even though you got it when you were 35," Dr. Lunn, an assistant professor of nephrology at Stanford University and co-director of the PRIDE Study stated. "And then you have a heart attack or stroke at 65 or 55." Or someone might skip a screening that would have detected cancer.

Just as medical students are lacking racism training in their programs, medical schools also lack homophobia training. There are about 11 million adults in the US (about 4% of the adult population) who identify as LGBTQ+. Homophobia doesn’t just happen in small towns. It happens in urban areas too. Given the pervasiveness of homophobia in doctors’ offices across the nation, it is imperative that aspiring doctors receive training on how to best care for LGBTQ+ patients and to tear down the barriers that prevent patients from receiving the aid that they need.