aidsproject

[aidsproject]

Works Cited

Calonico , Scott. “Reagan Administration's Chilling Response to the AIDS Crisis.” Vanity Fair Videos. Vanity Fair, December 1, 2015. https://www.vanityfair.com/video/watch/the-reagan-administration-s-chilling-response-to-the-aids-crisis

Dengelegi , Lidia, Torquato, Scott and Weber, John. "Drug Users' AIDS-Related Knowledge, Attitudes, and Behaviors before and after AIDS Education Sessions." Public Health Reports (1974-) 105, no. 5 (1990): 504-10. Accessed September 23, 2020. http://www.jstor.org/stable/4628929.

Fee, Elizabeth, and Manon Parry. "Jonathan Mann, HIV/AIDS, and Human Rights." Journal of Public Health Policy 29, no. 1 (2008): 54-71. Accessed September 30, 2020. http://www.jstor.org/stable/40207166.

Fitzsimons, Tim. “LGBTQ History Month: The Early Days of America's AIDS Crisis,” October 15, 2018. https://www.nbcnews.com/feature/nbc-out/lgbtq-history-month-early-days-america-s-aids-crisis-n919701.

Francis, Donald P. "Commentary: Deadly AIDS Policy Failure by the Highest Levels of the US Government: A Personal Look Back 30 Years Later for Lessons to Respond Better to Future Epidemics." Journal of Public Health Policy 33, no. 3 (2012): 290-300. Accessed October 17, 2020. http://www.jstor.org/stable/23253449.

Hotchkiss. William S. "The American Medical Association and the War on AIDS." Public Health Reports (1974-) 103, no. 3 (1988): 282-88. Accessed September 21, 2020. http://www.jstor.org/stable/4628469.

How to Survive a Plague. Directed by David France, Public Square Films, 2012.

Huber, Peter W. “Ronald Reagan's Quiet War on AIDS,” Fall 2016. https://www.city-journal.org/html/ronald-reagans-quiet-war-aids-14783.html.

National Aids Memorial. “Quilt.” Accessed October 18th, 2020. https://www.aidsmemorial.org/quilt.

National Hemophilia Foundation. “HIV/AIDS.” National Hemophilia Foundation, July 15, 2015. https://www.hemophilia.org/Bleeding-Disorders/Blood-Safety/HIVAIDS.

New York Times. “Loss and Bravery: Intimate Snapshots from the First Decade of the AIDS Crisis.” The New York Times. The New York Times, December 1, 2018. https://www.nytimes.com/2018/12/01/health/aids-day-photography-1980s.html.

Rox, Philippa. “HIV Life Expectancy 'near Normal' Thanks to New Drugs,” May 11, 2017. https://www.bbc.com/news/health-39872530.

 Samuels, Allison. “Magic Johnson: 20 Years of Living With HIV.” Newsweek, May 18, 2011. https://www.newsweek.com/magic-johnson-20-years-living-hiv-67567.

Shilts, Randy. And the Band Played on: Politics, People, and the AIDS Epidemic. London: Souvenir Press, 1988.

Whelehan, Patricia. Anthropology of Aids: a Global Perspective. Gainesville, FL: University Press of Florida, 2018.

Witchel, Alex. “AT HOME WITH Jeanne White-Ginder; A Son's AIDS, and a Legacy.” The New York Times, September 22, 1992.

[aidsproject]

Part five, HIV/AIDS in the twenty-first century.

The HIV/AIDS pandemic is ongoing today. In the twenty first century, an estimated 34-47 million people are living with HIV[1]. Most of these cases were in sub-Saharan Africa, however the disease is also common in south and southeast Asia1. India alone had a projected 20-25 million HIV cases in 2010 [1]. In Swaziland, almost 40% of the adult population is HIV positive [2]. In the United States, the “face” of the disease has changed[2]. A disease that started out primarily affecting white, middle class, men who have sex with men, is now increasingly prevalent in people of color, specifically women of color[2]. Most new aids cases are transmitted through heterosexual sex[3]. However, men who have sex with men are still at higher risk than the general population. The United States records around 40,000 new cases each year alone of the disease [2]    

 There is still no vaccine or cure for HIV/AIDS, however, quality of life and life expectancy for people with HIV varies by country and income level of those affected. In developed countries such as the United States and the United Kingdom, those with access to medications and healthcare who begin treatment early have a “nearly normal” life expectancy and can live a relatively normal life[4]. Without access to these medications, the life expectancy for people with AIDS is about two to four years[5]. As with any health crisis, those with more money are better off. HIV treatment is notoriously expensive in the United States. Those with access to the best medical treatment, can live for decades with HIV before it progresses to AIDS.  NBA player Magic Johnson, who was diagnosed with HIV around thirty years ago, is an example of how one can benefit from antiviral treatment. Johnson was diagnosed with HIV in 1991 and still lives a relatively normal life today[6]. However, today, the majority of those living with HIV/AIDS live in poverty[7]. Another medical advancement has been the discovery of drugs that prevent parent to child transmission of HIV. During the beginning of the pandemic, those with HIV were discouraged from becoming pregnant, as they could pass the disease onto their baby. Now, the drug AZT076 “dramatically reduces” the risk of parent to child transmission[8]. In addition, HIV is no longer commonly spread through healthcare settings in the developed world, in developing and underdeveloped countries, hospitals and clinics often do not have the resources to sterilize needles. Tattoo and piercing parlors have adapted safety measures to sanitize needles[9].                                                     

Despite medical advances, stigma around the disease remains prevalent today. A large part of this stigma worldwide comes from AIDS being a disease that primarily affects people living in poverty[10]. Despite most new cases in the United States being spread by heterosexual contact, the idea that HIV/AIDS is a “gay” disease is still very prevalent, which means homophobia contributes to the stigma associated with the disease as well, especially in the western world. Any disease that can be transmitted sexually tends to be stigmatized more than diseases which spread in other ways. Furthermore, the spread of HIV/AIDS though contaminated needles of IV drug users also plays a factor in stigmatizing both those with the disease and injection drug users in general. Since the start of the pandemic, programs dedicated to safer sex and drug use have been introduced to help curb the spread of the disease. Needle exchange programs for injection drug users, while controversial, rely on harm reduction models to help ensure injection drug users use clean needles[11]. Harm reduction programs regarding safer sexual behavior have proven to be less effective[11].

 [1] Whelehan, Patricia. Anthropology of Aids: a Global Perspective. Gainesville, FL: University Press of Florida, 2018. Page 3

[2] Whelehan, 21

[3] Whelehan, 33

[4] Rox, Philippa. “HIV Life Expectancy 'near Normal' Thanks to New Drugs,” May 11, 2017. https://www.bbc.com/news/health-39872530.

[5] Whelehan, 248

[6] Samuels, Allison. “Magic Johnson: 20 Years of Living With HIV.” Newsweek, May 18, 2011. https://www.newsweek.com/magic-johnson-20-years-living-hiv-67567.

[7] Whelehan, 42

[8] Whelehan, 193

[9] Whelehan, 162

[10] Whelehan, 237

[11] Whelehan, 161

[aidsproject]

Part four-AIDS and other at-risk groups

Throughout the ongoing pandemic, HIV/AIDS have been associated with the LGBTQ community in the United States. However, there are many demographics that were at risk during the beginning of the pandemic, and many of these groups are still at risk today. While the virus ravaged the LGBTQ community, others were also at risk. Those at risk during the start of the crisis were labelled as the “four Hs” homosexuals, heroin addicts, hemophiliacs, and Haitians[1]. Sex workers, particularly escorts (those who engage in sexual activity for money) were also at risk[2].             

In 1982 Haitians began showing up in New York City hospitals with what was known as GRID (Gay-related immune deficiency). These patients were insisting that they were heterosexual.[3] Cases also occurred in Florida. This led to widespread discrimination against Haitians or people perceived to be Haitian[4]. Haitian community leaders called for the cdc to remove Haitians from the “high risk groups”, as they were the only nationality on the list and felt they had been singled out.[4] Why were Haitians at increased risk? Likely because in the 1970s, there was a link between Haiti and Zaire (now Congo). The African country had homed many Haitians who had brought the disease back to the island of Hispaniola[5]. However, By 1985, Haitians had been dropped by the CDC as a high risk group.[6] However, the disease is still prevalent in Haiti.

(In order to use respectful language, those who engage in so called “prostitution” will be referred to as sex workers or escorts for this project.)

During the beginning of the crisis, some sex workers who had sex for money were aware of the risk of aids but had no other means to make money[7]. A third of military aids cases were traced back to visiting sex workers[8].One of the first documented cases of aids in San Francisco was a woman who had arrests related to sex work and intravenous drug usage. She had given birth to three children were also infected. She continued sex work until the time of her death[9].Sex workers of all types were scapegoated for spreading the aids virus. Of sex workers, female escorts who had sex for money or drugs were scapegoated the most for spreading aids[10].Today, Advocates for sex workers rights try to improve working conditions for sex workers rather than shaming them.[11] For the most part, escorts who work for themselves will practice safer sex with clients[12]. If an escort works for a brothel, the usage of condoms may be up to the brothel owner rather than the sex worker herself[13]. While sex workers, particularly female escorts, are blamed for the spread of the disease, as of 2009, the cdc stated that only 0.4% of HIV cases consist of men who contract it from female escorts[14].

Users of intravenous drugs (particularly heroin) were also coming down with “GRID” or “gay pneumonia” in the Bronx in 1982[15]. As of 1990, 25% of AIDS cases were traced back to intravenous drug use[16]. Sharing needles was the primary way intravenous drug users contracted the disease, however, some users also engaged in unprotected sex in exchange for drugs or drug money, which can also spread the disease. Drug use can also impair the immune system, making users more suspectable to contracting HIV/AIDS. A 1990 study of patients in a detoxification facility found that of illegal drug users, 96% were aware that sharing needles could spread AIDS[17]. Of 12 activities, sharing needles was ranked by patients as the riskiest. Despite this, 92% of IV drug users admitted to sharing needles at some point, including fifty percent which had done so in the past year[17]. Still, 85% reported making some behavioral changes to reduce their risk of contracting the virus[18]. Still, many claimed that addiction is so powerful, that they felt unable to protect themselves from the disease[18]. Statistics regarding drug users and AIDS have not changed much since the study was conducted, as of 2009, about 25% of transmission occurs in drug users[19] While the American Medical Association and other medical groups state that drug addiction is not a criminal issue but a public health issue, intravenous drug use remains illegal in the United States[20], because of this, the stigma associated with drug use during the beginning of the spread of the disease has not gone away. HIV/AIDS was and still is used to stigmatize drug users. Needle exchange programs, which provide clean needles and intervention for intravenous drug uses, can help prevent the spread of HIV/AIDS amongst drug users[21]. However these programs are controversial because drug use remains illegal.                            

Hemophiliacs, people who are unable to form blood clots, were at increased risk of aids during the beginning of the pandemic. In the 1980s, medical technology had increased the life expectancy for hemophiliacs. The injection of factor viii allowed hemophiliacs to clot. A handful of cases were reported in hemophiliacs as of 1983[22]. Before the knowledge of aids and how it was spread, an estimated 90% of individuals with severe hemophilia were infected with HIV through factor VIII injections[23].There have been no cases of HIV spreading through factor VIII injections in the United States since 1987 thanks to increased sterilization[23].

One notable case of a hemophiliac contracting the disease was that of teenager Ryan White, who contracted HIV from a blood transfusion[24]. White was targeted by his own community for being HIV positive. Despite the disease not being spread by casual contact, White was banned from attending school in his hometown of Kokomo Indiana[24]. A bullet was found in the window of his family’s house[24]. Whites case attracted the attention of many celebrities and the media. Ryan’s mother, Jeanne White-Ginder, became an advocate for AIDS education after Ryan’s death in 1990, and changed the way the public perceived the disease.  

Regardless of who got the disease, those who were affected were highly stigmatized. While hemophiliacs are no longer a high-risk group due to an increase in medical safety, sex workers and intravenous drug users still are. In addition, people of color have emerged as a high-risk group in the 21st century. Black and Latino people are at higher risk of contracting the virus today, with approximately half of new infections occur in people of color [25]. As of 2006, 44% of people living with AIDS in the United States in 2006 were African American[26]. As with any pandemic or public health crisis, the marginalized are at the most risk. While some groups ar at higher risk than others, HIV/AIDS can and does affect all sorts of people.

[1] Shilts, Randy. And the Band Played on: Politics, People, and the AIDS Epidemic. London: Souvenir Press, 1988. 197

[2] Shilts 510

[3] Shilts 124

[4] Shilts 322

[5] Shilts 392-393

[6] Shilts 553

[7] Shilts, 510

[8] Shilts, 511

[9] Shilts 512-513

[10] Whelehan, Patricia. Anthropology of Aids: a Global Perspective. Gainesville, FL: University Press of Florida, 2018. 129

[11] Whelehan, 146

[12] Whelehan, 184

[13] Whelehan, 185

[14] Whelehan 129

[15] Shilts, 124

[16] Dengelegi , Lidia, Torquato, Scott and Weber, John. "Drug Users' AIDS-Related Knowledge, Attitudes, and Behaviors before and after AIDS Education Sessions." Public Health Reports (1974-) 105, no. 5 (1990): 504-10. Accessed September 23, 2020. http://www.jstor.org/stable/4628929. Page 504

[17] Dengelegi, Torquato, and Weber, 506

[18] Dengelegi, Torquato, and Weber, 507

[19] Whelehan 156

[20] Whelehan 158

[21] Whelehan, 159

[22] Shilts, 221

[23] National Hemophilia Foundation. “HIV/AIDS.” National Hemophilia Foundation, July 15, 2015. https://www.hemophilia.org/Bleeding-Disorders/Blood-Safety/HIVAIDS.

[24] Witchel, Alex. “AT HOME WITH Jeanne White-Ginder; A Son's AIDS, and a Legacy.” The New York Times, September 22, 1992.

[25] Whelehan 21

[26] Whelehan, 38

[aidsproject]

Part three, Federal Governments response and the response from the right.

In 1982, Journalist Lester Kinsolving asked Reagan’s white house press secretary Larry Speakes about AIDS[1]. When Kinsolving described it as a “gay plague” the press room erupted with laughter[1]. “I don’t have it, do you?” replied Speakes jokingly. Kinsolving in response, asked if the white house “looks at this like a great joke”, to which Speakes replied that he “doesn’t know a thing about it”[1]. In 1983, during another white house press briefing, Speakes made a joke about Kinsolving’s ears perking up when another journalist said the word “fairies”, stating that he has an “abiding interest in that” to which the room erupted with laughter once again1­­. On a more serious note, Speakes finally elaborates that 12 million dollars had been set aside by the administration for AIDS research[1].            

 One of the major criticisms of Ronald Reagan's presidency was his failure to respond to the AIDS crisis in an appropriate amount of time. This is by no means the fault of just Reagan alone, but his entire administration. By the time Doctor Edward Brandt, the surgeon general, had declared aids to be a top health priority of the Reagan administration, 1450 Americans had already contracted the disease which had been identified two years before[2]. The White House had threatened to veto a bill that the senate approved in which money for AIDS funding was including in 1983[3]. The bill, which ultimately passed, put aside only 12 million for AIDS research out of a one trillion-dollar budget[3]. For the CDC, NIH, and FDA, these twelve million dollars was inadequate. The estimates by the Public Health Service calculated that an appropriate budget would be approximately three times that [4]. Still, the religious right opposed the mere 12 million put aside for AIDS research, a right-wing magazine claimed the 12 million represented “a massive lobbying campaign by militant homosexuals”[3]. Doctor Marcus Conant,  a dermatologist and one of the first Doctors to diagnose AIDS stated that “The failure to respond to this epidemic now borders on a national scandal” in 1983.[5]

Ronald Reagan finally uttered the word “AIDS” in public in 1985, four years after the first reports of it in the United States were made[6]. At this time, over 5000 Americans had died of the disease1. The Reagan Administration made cuts to the CDC during the epidemic[7]. Donald P Francis, an epidemiologist who was appointed “coordinator of AIDS laboratory activities” for the CDC in 1983, wrote the inadequate funding “seriously restricted our work”[8] and that the CDC did not even have a retrovirus lab at the time[8]. That very same year, French scientists were able to isolate the virus[8] In 1985 when Francis was asked by the director of the CDC to put together an AIDS prevention plan, he accepted the offer[9]. Because there was no vaccine, Francis put together a plan based on educating people about behavior changes and promoting safe sex and intravenous drug use. This plan was rejected by the CDC, and Francis was advised by the head of the CDC to “look pretty and do as little as you can” [10]. The director of the CDC at the time, doctor James Mason, a religious conservative, stated that “there are certain areas which, when the goals of science collide with moral and ethical judgement, science has to take a time out” [11].                           

 Publicly, the Reagan administration eventually announced AIDS to be “the federal governments number one health priority”[12]. However, budgeting did not reflect this. Those who defend the Reagan administration’s response to the crisis claim that Reagan put qualified doctors in charge of the CDC and FDA[13], and that the administration had the FDA approve drugs for the virus as quickly as possible[12], a statement that activists disagreed with[14].  At the advice of the American Medical Association, Reagan did create a national commission on AIDS with representatives from the federal government[15]. However, at the very same year, the United States was the only major western nation to not have launched a public health campaign regarding AIDS[16]. It is worth noting that this response did not end with the Reagan Administration, Congress under George HW Bush cut National Institute of Health budget by 150 million[14] , and George HW Bush refused to attend AIDS conferences[14]. During Bill Clintons 1992 campaign, activists also accused him of ignoring the AIDS crisis [14]. Overall, it can be concluded that much more could have been done during the early years of the AIDS pandemic by the Ronald Reagan administration.              

[1] Calonico , Scott. “Reagan Administration's Chilling Response to the AIDS Crisis.” Vanity Fair Videos. Vanity Fair, December 1, 2015. https://www.vanityfair.com/video/watch/the-reagan-administration-s-chilling-response-to-the-aids-crisis.

[2] Shilts, Randy. And the Band Played on: Politics, People, and the AIDS Epidemic. London: Souvenir Press, 1988. Page 298

[3] Shilts, 328

[4] Shilts 329

[5] Shilts 359

6Fee, Elizabeth, and Manon Parry. "Jonathan Mann, HIV/AIDS, and Human Rights." Journal of Public Health Policy 29, no. 1 (2008): 54-71. Accessed September 21, 2020. http://www.jstor.org/stable/40207166. Page 55

[7] Shilts, 290

[8] Francis, Donald P. "Commentary: Deadly AIDS Policy Failure by the Highest Levels of the US Government: A Personal Look Back 30 Years Later for Lessons to Respond Better to Future Epidemics." Journal of Public Health Policy 33, no. 3 (2012): 290-300. Accessed September 17, 2020. http://www.jstor.org/stable/23253449, page 294.

[9] Francis, 295

[10] Francis, 297

[11] Francis 298

[12] Francis, 299

[13] Huber, Peter W. “Ronald Reagan's Quiet War on AIDS,” Fall 2016. https://www.city-journal.org/html/ronald-reagans-quiet-war-aids-14783.html.

[14] How to Survive a Plague. Directed by David France, Public Square Films, 2012.

[15] Hotchkiss. William S. "The American Medical Association and the War on AIDS." Public Health Reports (1974-) 103, no. 3 (1988): 282-88. Accessed September 21, 2020. http://www.jstor.org/stable/4628469. Page 283.

[16] Shilts 589

[aidsproject]

Part two-AIDS and the LGBTQ community

(A quick note)

Most early AIDS patients were labelled as gay men, this may this be partially due to a limited understanding of gender and sexual orientation that most Americans had in the 1980s and I believe that in reality, early AIDS patients were probably members of the LGBTQ+ community of various genders and sexual orientations. For this project I will use the terms “gay” or “men who have sex with men” (MSM) when quoting from a source that uses that terminology, However, I will use the umbrella term LGBTQ+ (lesbian, gay, bisexual, transgender, queer, plus) while writing about the community to be more inclusive.

In the western world, AIDS was labelled as a “gay” disease[1]. Clusters of LGBTQ+ people began getting sick in the United States in 1981. By 1984 Johnathan Mann, A public health coordinator and World Health Organization official, believed that a disease that was mysteriously killing young patients in Zaire in Africa (Now Democratic Republic of Congo), was related to the disease killing LGBTQ+ people in New York and San Francisco[2]. While heterosexual transmission occurred[2] the stigma around AIDS revolved around it being a disease that affected LGBTQ+ community. The disease primarily affected those in big cities, with outbreaks occurring in New York and San Francisco, both cities with prominent LGBTQ+ communities. By 1989 aids was the leading cause of death for men under 44 in New York City[3].                    

 Gaetan Dugas, a French-Canadian flight attendant, was widely regarded as “patient zero” of North American aids cases[4]. Because he traveled throughout the country for his job, he had male sexual partners across North America. He was the first person in Canada to be diagnosed with AIDS[5]. He had approximately 250 sexual partners a year[4]. He was tracked down by health officials in 1982 and informed that he may be passing AIDS around[6]. He was advised to give up sex which he refused to do[7]. While it is unfair to blame the spread on one individual, there is no doubt that Dugas was a spreader of the disease, however, evidence now shows that the virus was in North America long before Dugas was diagnosed.[8]         

 In 1981, Larry Kramer, who had written a controversial novel called “F*****s” about gay men, wrote a series of letters alerting people, including Calvin Klein and a New York Times reporter, of the epidemic[9]. Kramer was outspoken in alerting New York’s LGBTQ+ community about Kaposi’s sarcoma, a type of cancer that was commonly seen in AIDS patients. Kramer was accused of being “alarmist” within the community[10]. Despite this, Kramer founded the Gay Men's Health Crisis was founded in 1982, which created a support network for aids patients and their loved ones [11]. In 1983 Kramer wrote an article for the New York Native titled “1112 and counting” about the AIDS epidemic[12]. In this article, he called out the New York Times for its lack of AIDS coverage. He also chastised the CDC for not getting to AIDS patients “fast enough”[13].However, the community itself was in somewhat of a state of denial about the crisis. Kramer found that many gay men were in denial about the epidemic12. He also called out the only gay magazine at the time, The Advocate, for not acknowledging the epidemic[13]. This article brought attention to the epidemic in the LGBTQ+ community.

Another factor of spread in the LGBTQ+ community was gay bath houses. Gay bathhouses spread the disease[14]. While important for the LGBTQ community, these bathhouses were dangerous from a medical standpoint. A study found that “a typical bathhouse patron had 2.7 sexual contacts a night” 14. Men who went to bathhouses were generally more likely to have STD than other men who have sex with men who did not frequent these establishments. [14] Criticism of bathhouses was controversial in the LGBTQ community. Calls to shut them down by public health officials were met with criticism [15]. Bathhouse owners claimed that public health officials were singling out LGBTQ+ businesses[16]. Most LGBTQ+ newspapers at the time received advertising revenue from bathhouses and were therefore reluctant to point out their role in the spread of the disease[17]. Eventually by 1984, more community leaders were willing to support bathhouse closures [18].

It is perhaps because the disease was primarily found in the LGBTQ+ community that the response to the disease from the public, the federal government, and even sometimes medical professionals was to stigmatize AIDS patients rather than treat them with compassion. It was only when heterosexual transmission became apparent that people began to be more sympathetic to those with the disease. While risk of outbreaks in the United States among people who were not part of the LGBTQ+ community was low, cases among heterosexuals were used to gain government attention for the disease[19]. In addition, many religious leaders claimed AIDS was a punishment from God for homosexual behavior[20].                      

 Today HIV and AIDS still disproportionately affects those in the LGBTQ+ community. Men who have sex with men are still at higher risk, as opposed to “heterosexual” contact. Lesbians, or “women who have sex with women”, are not considered a high-risk group[21]. Transgender people are also at increased risk[22]. While many still see AIDS as a “gay” disease, several high profile cases involving heterosexuals changed public perception during the beginning of the pandemic. In 1984 Ryan White, a hemophiliac teenager, contracted HIV from a blood transfusion[23]. In addition, in 1991, NBA player Magic Johnson announced he had contracted HIV from heterosexual activity.[24] While White died from the disease, Johnson is still alive today. Both cases showed the public that the disease can affect people outside the LGBTQ+ community.                              

[1] Fee, Elizabeth, and Manon Parry. "Jonathan Mann, HIV/AIDS, and Human Rights." Journal of Public Health Policy 29, page 54

[2] Fee and Parry, 57

[3] How to Survive a Plague, How to Survive A Plague, 2012, https://www.amazon.com/How-Survive-Plague-Bill-Bahlman/dp/B00AGEHFK8.

[4] Randy Shilts, And the Band Played on: Politics, People, and the AIDS Epidemic (London: Souvenir Press, 1988). Page 83

[5] Shilts 84

[6] Shilts 136

[7] Shilts 138

[8]  (Tim Fitzsimons, “LGBTQ History Month: The Early Days of America's AIDS Crisis,” October 15, 2018, https://www.nbcnews.com/feature/nbc-out/lgbtq-history-month-early-days-america-s-aids-crisisn919701.)

[9] Shilts 91

[10] Shilts 108

[11] Shilts 179

[12] Shilts 244

[13] Shilts 245

[14] Shilts 19

[15] Shilts 305

[16] Shilts 306

[17] Shilts 307

[18] Shilts 436

[19] Shilts 513

[20] Fee and Parry 55

[21] Whelehan, Patricia. Anthropology of Aids: a Global Perspective. Gainesville, FL: University Press of Florida, 2018. 127

[22] Whelehan 112.

[23] Witchel, Alex. “AT HOME WITH Jeanne White-Ginder; A Son's AIDS, and a Legacy.” The New York Times, September 22, 1992.

[24] Samuels, Allison. “Magic Johnson: 20 Years of Living With HIV.” Newsweek, May 18, 2011. https://www.newsweek.com/magic-johnson-20-years-living-hiv-67567.

[aidsproject]

In this post I will be focusing on the AIDS memorial quilt and notable people who died from the virus. The AIDS memorial quilt was created by the National Aids Memorial in 1985 is now the world’s biggest piece of folk art with thousands of 3' x 6' fabric panels memorializing those who have died of aids related illnesses. The following pictures included are of panels from the aids quilt that memorialize notable aids deaths. Some of the many public figures who died from the virus are (in order of quilt photos) rapper Eazy-E, Queen front man Freddie Mercury, philosopher Michel Foucault, actor Robert Reed, actor Rock Hudson, model Gia Carangi, teenager and AIDS activist Ryan White, musician Tom Fogerty, and musician Liberace.

[aidsproject]

Part one-Life as an early AIDS patient.

 In 1981, the first accounts of the disease that would come to be known as AIDS was published in the journal Morbidity and Morality Weekly Report, Published by the Center of Disease Control and Prevention[1]. A cluster of homosexual men had come down with a mysterious illness. Within two years, the virus that causes the disease (human immunodeficiency virus) had been identified[2] The disease mostly affected young, previously healthy people. Most of the first AIDS patients were part of the LGBTQ community, primarily men who had sex with men. In fact, the disease was known as Gay-related immune deficiency (GRID) in the early 1980s.[3] before the terms AIDS “Human immunodeficiency virus” was coined. Because the disease primarily affected those in the LGBTQ community, there was increased stigma surrounding it. However, research in 1984 confirmed transmission outside the LGBTQ+ community[4].                                                                                                           

For early AIDS patients, there was not much medical technology available to ease suffering. Most patients ended up in the ER or hospice with a short period of time to live. The disease caused a variety of symptoms including dramatic weight loss, pneumonia, skin lesions, and blindness[5]. AZT, the first drug for AIDS patients, cost 10,000 dollars a year[5]. The drug did not cure patients but prolonged their life expectancy. Many AIDS patients were unable to take the drug due to side effects and cost [5]. A 1993 study later showed AZT was not very effective against the AIDS virus5. Many patients turned to off market, non FDA approved drugs in attempt to improve their quality of life[5]. ACT UP, an AIDS activist group, protested the lack of approval of DHPG, another drug to treat late stage AIDS, which was not approved by the FDA. The drug could prevent blindness caused by AIDS. Eventually the FDA agreed with ACT UP and approved the drug in 1989[5]. It was not until 1994 that a new, more potent class of drugs was discovered for AIDS, including a drug called Saquinavir[5]. Most AIDS patients relied on a cocktail of drugs to manage their disease.                          

There was a tremendous amount of stigma and fear surrounding the disease. Many patients relied on care from their partners and friends rather than from medical professionals. Fear of catching the disease sometimes led patients to be denied medical care. Some nurses refused to treat AIDS patients[6]. For those who did seek medical treatment towards the end of their lives, they, in some cases, waited days for an ER bed, such as in New York City[5]. After their deaths, they would likely have trouble with receiving a proper funeral. When people died at the hospital their bodies were put into black trash bags. Many funeral parlors would not take people who had died of AIDS5. In fact, The New York State funeral director’s association recommended against embalming those who had died of AIDS.[7]           

Much has changed since the 1980s. Today, for those with access to medical technology who detect HIV early on, life expectancy is nearly normal[8]. The disease can be managed for decades and patients can live a relatively normal life. These drugs that help manage the disease are not accessible to everyone worldwide, and in some countries (such as United States), treatment is costly. In addition, the disease is still largely stigmatized worldwide[9]. While we now know that casual contact does not spread the disease, fear of the disease resulting in homophobia is still very much present.

 [1] Fee, Elizabeth, and Manon Parry. "Jonathan Mann, HIV/AIDS, and Human Rights." Journal of Public Health Policy 29, page 54

[2] "HIV Surveillance — United States, 1981–2008." Morbidity and Mortality Weekly Report 60, no. 21 (2011), page 289

[3] Fee and Perry 55

[4] Fee and Perry 57

[5] How to Survive a Plague, How to Survive A Plague, 2012, https://www.amazon.com/How-Survive-Plague-Bill-Bahlman/dp/B00AGEHFK8.

 [6] Shilts, Randy. And the Band Played on: Politics, People, and the AIDS Epidemic. London: Souvenir Press, 1988. Page 321

 [7] Shilts 321

[8] Rox, Philippa. “HIV Life Expectancy 'near Normal' Thanks to New Drugs,” May 11, 2017. https://www.bbc.com/news/health-39872530.

 [9] Whelehan, Patricia. Anthropology of Aids: a Global Perspective. Gainesville, FL: University Press of Florida, 2018.