HIV/AIDS activism
As a serious
Issues such as
Background of activist methods and principles
In
Highly bigoted attitudes supporting discrimination as more and more were diagnosed with HIV/AIDS endured for many years as, according to one scholarly report, a significant number of South Africans perceived the disease as "just desserts" that destiny had imposed upon those engaged in supposedly sinful actions. Talk of South Africa experiencing a "gay plague" boiled over in the country's culture. Certain private hospitals in the nation refused to admit HIV/AIDS patients at all.[5]
Nonetheless, over time, as one scholarly report has concluded, the "early location of gay rights within [the] wider human rights discourses of the anti-apartheid movement" and its tie to activism supporting those with HIV/AIDS resulted in a general shift towards
In general terms, methods of protest by HIV/AIDS activists have included marching with
In the U.S., the iconography of the inverted pink triangle (reclaimed gay pride symbol, originally utilized by Nazi Germany to mark gay men, much as the Yellow badge was used for Jews) and the slogan 'Silence=Death' together, is common. Artists and activists from the originating collective, and then later ACT UP have used posters and stickers of the image across New York City, then worldwide, during the worst times of the HIV/AIDS crisis in the 1980s. The image is now owned by ACT UP and members often wear it on t-shirts, buttons, and utilize it in various other types of media.[8]
History of anti-disease activism by region
History of anti-disease activism in Africa
The widespread belief in various
In terms of social activism against governments, the controversial
Struggles against HIV/AIDS have been a persistent problem in South Africa specifically, with over five million of the nation's people being HIV positive as of 2004 data. In the shadow of the collapsed apartheid system, the country-wide debate on the disease has focused on the intense conflict between social activists aligned with the Treatment Action Campaign (TAC) and the nation's government. Official support for AIDS denialism and the administering of what has been seen as inadequate access to HIV treatment outraged activists who viewed the government's policies as a denial of their basic right to life. Efforts by the TAC and associated individuals proved success when, in September 2003, the South African Cabinet finally instructed the country's health ministry to create a comprehensive HIV treatment and prevention plan. Later commentators have considered the TAC campaign as one of the most successful if not the most successful example of civil society pushing for human rights in South Africa since the end of apartheid.[5]
HIV prevalence varies drastically from country to country inside Africa. For example, UNAIDS research in 2007 found that 23.9% of adults in Botswana had been inflected in comparison to the values of 12.5% in Mozambique and 2.8% in Rwanda. The South Africa and Zimbabwe had values of 18.1% and 15.3%, respectively.[10]
History of AIDS activism in North America
In the United States, AIDS, which had not yet been named, came into the awareness of affected communities in the early 1980's, and reached critical mass by the mid 1980s.
Because of the long incubation period of HIV, which can go on for over a decade while symptoms of AIDS gradually appear, HIV was not noticed at first by health professionals or by those infected. By the time the first reported cases of a mysterious, fatal immune system condition were found in large U.S. cities such as New York City, the prevalence of infection had passed 5% in some communities.[11]
The AIDS epidemic officially began on 5 June 1981, when the U.S. Centers for Disease Control and Prevention (CDC) issued findings in its Morbidity and Mortality Weekly Report newsletter of unusual clusters of pneumocystis pneumonia (PCP) caused by a form of pneumocystis carinii (now recognized as a distinct species titled pneumocystis jirovecii). The report looked specifically at five homosexual men in the Los Angeles area.[12] Publications such as the San Francisco Chronicle and the Los Angeles Times gave the CDC's findings news coverage.[13] June 1981 additionally saw the first AIDS patient getting received into care under the aegis of the U.S. National Institutes of Health (NIH). By August 1981, the CDC reported a full 108 cases of the new disease across America.[14]
On 27 July 1982, a meeting of gay community leaders and activists met in Washington D.C., with representatives from the
1982 also saw the first congressional hearing exploring the now renamed AIDS, called by Representative Henry Waxman of California. The CDC estimated at this point that tens of thousands would likely be affected by the disease.[17] A change in terminology meant the proliferation of the new, CDC-coined name of Acquired Immune Deficiency Syndrome (AIDS).[13]
That same year, a group of New Yorkers (Nathan Fain,
Also in 1982, activists
In 1983, the GMHC sponsored a benefit performance of the
In 1984, Dianne Feinstein, then mayor of San Francisco, declared the first "AIDS Awareness Week" event. Featuring the primary goal of educating staff and students from San Francisco Community College District, it involved informing people about causes, effects, and symptoms of AIDS as well as prevention methods.[19][20] 1984 additionally saw the very first laboratory isolation of HIV, the breakthrough coming the separate research efforts of Dr. Luc Montagnier in France and Dr. Robert Gallo in the U.S.[13]
By 1985, publications such as Annals of Internal Medicine warned that "even if all transmission of the virus were to stop immediately, the... syndrome would continue to be a major public health problem for the foreseeable future."[11] That year additionally saw the rise to prominence of HIV/AIDS activist Ryan White, an Indiana teenager with AIDS who got barred from his school due to his status, and his life's work of speaking out publicly against AIDS stigma and discrimination. White eventually succumbed to the disease in 1990, dying at the age of eighteen.[13]
A form of HIV/AIDS activism that has received mainstream coverage has been the creation of and public showings of the
The most prominent HIV/AIDS activist group, ACT UP, got its start in 1987 at the Lesbian, Gay, Bisexual & Transgender Community Center in New York City. Larry Kramer spoke as part of a rotating series of speakers, and his well-attended, fiery speech focused on action to fight AIDS while condemning the Gay Men's Health Crisis (GMHC) group as not doing enough. Though a founder of GMHC, Kramer resigned due to his perceiving of the organization as politically impotent. During the 1980s and 1990s, ACT UP focused on direct action aimed at changing public policy. In a time of political inaction on AIDS, during the silence of the Reagan administration, the group became increasingly confrontational as larger numbers of gay men, in particular, were dying. The group also formed treatment action groups to put medical research and treatment into the hands of patient activists, as many hospitals were not treating People with AIDS, or not offering drug trials to those who wanted access. Many demonstrations were aimed at granting compassionate release of experimental treatments that the FDA was holding up in what ACT UP felt was excessive testing during a time of emergency.[22][23][13]
For example, the group's 11 October 1988 protest picked up national media coverage as it successfully shut down the headquarters of the U.S. Food and Drug Administration (FDA) for a day. "Hey, hey, FDA, how many people have you killed today?" chanted a crowd estimated by ACT UP at between 1,100 and 1,500 people. The protesters additionally hoisted a black banner that simply read "Federal Death Administration" as well as hoisting an effigy of then President Ronald Reagan.[22] The Atlantic later called it one of the most successful demonstrations during the time of the AIDS crisis.[23]
That same year, funding for national, regional, and community-based organizations to fight HIV/AIDS began. (Comprehensive school-based education to begin teaching the young about the disease had started in 1987).
In terms of disease prevalence more generally, AIDS incidence increased rapidly through the 1980s only to peak in the early 1990s and subsequently decline into the dawn of the 21st century.[24] Activism meant by the early 1990s the FDA started a process known as "accelerated approval" that got experimental yet promising drugs to individuals with AIDS faster.[13]
In 2001, a CDC analysis of cases from 1981 through 2000 found that a full 774,467 persons had been reported with AIDS in the U.S. Of that total, 448,060 had died compared to 3542 persons with unknown vital status. The study's findings of 322,865 individuals living with AIDS were the highest ever reported.[24] UNAIDS data collected in 2007 stated that 0.6% of adults in the U.S. had HIV in comparison to 0.4% of Canadian adults.[10]
In the 2000's, the
The activist organization
In Canada, activism took a very similar form as in the United States and Europe. A notable figure includes Manitoba based activist Albert McLeod, who has done extensive research on sociodemographic factors in HIV/AIDS rates in Indigenous communities across Canada, of note recognizing that Indigenous communities in Canada see a 3.5 times higher rate of HIV/AIDS when contrasted with other ethnic groups.[29] McLeod is also involved in several Indigenous based organizations working for equity in healthcare access especially addressing HIV/AIDS care, including Communities, Alliances, and Networks also known as CAAN and the Nichiwakan Native Gay Society, recognized as one of the first Indigenous-Queer groups to be formed in Canada. [30]
History of anti-disease activism in Europe
Cases of mysterious deaths in Europe during the early 1980s caused the proliferation of discrimination, fear, and stigma like in other areas. The World Health Organization (WHO) has remarked in a statement that "AIDS was—and in absolute, global terms still is—a stinging challenge to the values of modernity received, for better or worse, from Europe's Age of Enlightenment... [since] [a]ffluent, confident, gender-progressive, often social-democratic welfare states awoke, in the early 1980s, to an uncomfortable reminder of their human frailty." On example of the extreme reactions by some politicians is far-right French figure Jean-Marie Le Pen and his proposal of confining people with HIV/AIDS in prison-like facilities.[31]
European politics have frequently involved championing the fight against HIV/AIDS as a human rights issue. Health care itself is also fundamentally seen as a matter of fundamental rights, requiring major government investment and regulation. Despite this, social changes have taken place since the world economic recession of the late 2000s that have shifted budgets' focus toward cost containment and increased efficiency.[31]
In 1987, Diana, Princess of Wales, opened the UK's first purpose built HIV/AIDS unit intended exclusively for patients infected with the disease, at London Middlesex Hospital. In front of the media, Princess Diana shook the hand of a man with AIDS to demonstrate that it was safe to do so. She later stated, "HIV does not make people dangerous to know. You can shake their hands and give them a hug. Heaven knows they need it."[32]
One of the world's most important anti-disease events got started in central Europe. Held yearly on 1 December, World AIDS Day was first conceived in August 1987 by James W. Bunn and Thomas Netter. The two public information officers worked for the Global Programme on AIDS at the World Health Organization in Geneva, Switzerland.[33]
Bunn later commented to NPR about his motivations at the time, stating that:
"The stigma that surrounded AIDS was actually twofold. One of it was what you could easily argue had to do with homophobia. But also there was a stigma of fear. There was a lot that people felt they did not know about the epidemic[,] and they were afraid. And they were right to be afraid because of the things that they were hearing... [while] the stigma that surrounded it made it something that people didn't want to talk about. If it came into their lives... also, for people who were affected by it, they did not want to bring up... their experience... with it because[,] in those days, people were being fired from their jobs. They were being denied Social Security benefits. They were being ostracized by their families. They were being evicted from their homes because they were sick and dying."[33]
History of anti-disease activism in South America
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The regions of Latin America and the Caribbean contains a significantly large number of HIV cases. According to data from UNAIDS, this goes all the way up to two million people living with the disease. HIV/AIDS activism has taken place under the atmosphere of pervasive media bias against those diagnosed, particularly given the use of language such as "contagion" and "infection" in non-medical contexts.[34]
According to Luis E. Soto-Ramírez of Science:
There are issues in Latin America and the Caribbean that make epidemic conditions unique to the region. Many people still do not understand that HIV/AIDS is a viral, not a moral, infection. Widespread stigma and discrimination hamper efforts to achieve universal access to HIV prevention, treatment, and care. HIV transmission continues to occur among populations at higher risk, including sex workers, males that have sex with males (but increasing among heterosexuals), injecting drug users, and migrants. Prevention efforts, including education campaigns, are disorganized and poorly supported because budgets are mainly devoted to treatment.[35]
As with Africa, HIV prevalence differs notably from country to country inside Latin America and the Caribbean, although the values don't vary to the extent as in between African nations. For example, UNAIDS research in 2007 found that 3.0% of adults in the Bahamas had been inflected in comparison to the values of 1.1% in the Dominican Republic and 0.1% in Cuba.[10] When looking at new cases of infection, reporting presented at the International AIDS Conference held within Durban, South Africa in 2016 stated that only Chile and Uruguay managed to achieve a small reduction. Nations such as Argentina, Bolivia, Colombia, and Ecuador among others had data showing worsening trends.[34]
Analysis of anti-disease activism
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A 2018 report published by MD found that while efforts by ACT UP "arguably hastened the science, treatments and services for persons with HIV/AIDS", there still remained "found long-term effects on the activists" such as "concurrent posttraumatic stress responses and posttraumatic growth that are distinct from the experiences of persons affected by the illness but not involved with the campaign." However, the activists expressed gratitude for the opportunity to be a part of a close, positively-focused community.[36]
The U.S. National Institutes of Health (NIH) has stated as an organization that the "pressure of activists demanding early access to promising AIDS treatments" prompted fundamental changes within it. Activists managed to bust "the 'ivory tower' mentality wide open and forever" altered the specific paths "the search for treatments at NIH is conducted". The organization has credited the activists both with pushing to have drugs in the experimental stage more widely available for patients as well as more broadly having made stopping AIDS a systematic research priority.[37]
See also
- AIDS Awareness Week
- Cost of HIV treatment
- "Free Me"
- History of HIV/AIDS
- HIV-positive people
- How to Survive a Plague
- Misconceptions about HIV/AIDS
- NAMES Project AIDS Memorial Quilt
- Timeline of early HIV/AIDS cases
- World AIDS Day
References
- ^ ISBN 9780941920162.
- ^ ISBN 9781451694130.
- ^ a b c Boffey, Philip (18 September 1985). "Reagan Defends Financing for AIDS". The New York Times. Retrieved 3 June 2024.
- ^ ISBN 9780312241353.
- ^ a b c d "The Treatment Action Campaign and the History of Rights-Based, Patient-Driven HIV/AIDS Activism in South Africa"
- ^ "ACT UP/Boston Historical Records". Northeastern University Libraries Archives. January 2008. Archived from the original on 27 May 2018. Retrieved 4 April 2018.
- ^ O’Loughlin, Michael J. (21 June 2019). "'Pose' revisits controversial AIDS protest inside St. Patrick's Cathedral". America. Retrieved 24 June 2019.
- ^ Maggiano, Chris Cormier (8 September 2017). "Silence = Death". HuffPost. Retrieved 5 January 2019.
- ^ Alsop, Zoe (10 December 2009). "On Scene: With Uganda's Anti-Gay Movement". Time. Retrieved 4 January 2019.
- ^ a b c d A Global View of HIV Infection, Joint United Nations Programme on HIV/AIDS (2008). Retrieved 4 January 2019.
- ^ PMID 2990275.
- PMID 6265753.
- ^ gmhc.org. Retrieved 7 January 2019.
- ^ "In Their Own Words... 1981". history.nih.gov. Retrieved 7 January 2019.
- ^ 80 Days That Changed the World. TIME (2011-11-29). Retrieved on 2011-12-03.
- ISBN 0-312-37463-1
- ^ "In Their Own Words... 1982". history.nih.gov. Retrieved 7 January 2019.
- nlm.nih.gov. Retrieved 7 January 2019.
- ^ ISBN 9781902669656.
- PMID 3216084.
- ^ "#9. AIDS Memorial Quilt". WTTW. Retrieved 7 January 2018.
- ^ a b International, United Press (11 October 1988). "Police Arrest AIDS Protesters Blocking Access to FDA Offices". Los Angeles Times. Retrieved 4 January 2019.
- ^ a b Crimp, Douglas (6 December 2011). "Before Occupy: How AIDS Activists Seized Control of the FDA in 1988". The Atlantic. Retrieved 29 August 2019.
- ^ a b c "HIV and AIDS --- United States, 1981—2000". MMWR Weekly. 1 June 2001 / 50(21); 430–434. Retrieved 4 January 2018.
- ^ ISSN 0362-4331. Retrieved 29 August 2019.
- ISSN 0190-8286. Retrieved 27 November 2020.
- ^ "Please Explain: HIV/AIDS Activism in the United States". WNYC. 30 March 2018. Retrieved 11 January 2019.
- S2CID 169056809.
- ISSN 0954-0121.
- ^ Michelin, Ossie (8 June 2023). "After 30 years, Albert McLeod continues to blaze a trail for queer Indigenous people". Broadview Magazine. Retrieved 27 November 2023.
- ^ PMID 28559682.
- ^ "How Princess Diana changed attitudes to Aids". BBC News. Retrieved 11 April 2023.
- ^ a b "NPR: How World AIDS Day Began". NPR. 1 December 2011. Retrieved 6 January 2019.
- ^ a b Human Rights Campaign. "Stigma and Discrimination Around HIV and AIDS in Latin America". hrc.org. Archived from the original on 17 December 2017. Retrieved 4 January 2019.
- PMID 18653849.
- ^ Bender, Kenneth (4 June 2018). "How AIDS Activism Impacted Activists". MD. Retrieved 6 January 2019.
- ^ "In Their Own Words... Search for Treatments". history.nih.gov. Retrieved 7 January 2019.
Further reading
- Powers, Theodore (2020). Sustaining Life: AIDS Activism in South Africa. University of Pennsylvania Press. ISBN 978-0-8122-5200-2.