The roots of AIDS activism in the USA and UK can be traced back in a 1983 conference held in Denver. The outcome of the Colorado conference, the Denver Principles that called for a new, improved relationship between individuals living with AIDS, the medical or health care fraternity, the government, and the society at large (Wright, 2013). The movement, particularly starting in the mid-1980s and stretching into the early 1990s, is described as a movement because it comprised people from diverse backgrounds whose needs and interests were not being fulfilled by the then influential stakeholders, such as the government, the medical institutions, and pharmaceutical corporations in the US and UK. The protestors utilized different approaches to successfully air their grievances and effectively further their collective interests. This paper seeks to explore the demands of the protests of the AIDS Activists of the UK and USA in the 1980s and explain how the protests were very effective and success in articulating and achieving them.
The AIDS Activists had specific needs and demands. The AIDS movement arose in the US and the UK in the 1980s due to fear and anger. The protestors feared the unknown and life-threatening illness that was claiming a significant number of people and were angered by the fact that the society as a whole did not seem concerned with AIDS as long as the epidemic only killed socially marginalized populations, such as the homosexuals and people of color (Saalfield & Navarro, 1991). Despite attempts by government and pharmaceutical corporations to counter the agenda of the Activism, the protestors were very distinct from the profit-driven interest for deregulation (Epstien, 1995). The protestors sought protection of consumer interest as opposed to pharmaceutical firms that were primarily interested in making profits from the AIDS situation (Crimp, 2016). These concerns lead the AIDS activists in the USA and the UK to forward particular demands, which enabled them to make significant achievements that justify how effective were the AIDS protests.
First, the AIDS activists successfully used mastery of the media and medicine to push for their careful agenda. The most significant success the AIDS activists made was achieving recognition by the government of how serious and legitimate their demands. Particularly, the activists, through the AIDS Coalition to Unleash Power (ACT UP), literally seized control of the FDA (Saalfield & Navarro, 1991; Crimp, 2016). The effective of the protest can particularly best be assessed by what ensued in the year following the SEIZE CONTROL OF THE FDA demonstrations. Government agencies dealing with the epidemic, especially the FDA and the National Institute of Health (NIH), realized and started to listen to the AIDS activists and begun to include people infected with the disease in important decision-making processes.
The activities recognition by these institutions stretched to being asked for their input. This recognition was influenced by the fact that some of the founding members of the AIDS in both the US and UK, such as Larry Kramer and Bobby Campbell, were medical practitioners or had considerable knowledge in the medical field (Berridge, 2002). For instance, a couple of months before the nationally organized demonstrations at the Department of Health and Human Services (DHHS) under the theme HEALTH CARE IS RIGHT that lead to a siege of FDA headquarters, members of the ACT UPs Treatment and Data Committee presented a comprehensive critique of the AIDS Clinical trials Group to NIH (Crimp, 2016).
The well-informed critique demanded the FDA adopt a system of parallel trial for experimental AIDS therapies which could see individuals who were not selected for the clinical trials to get AIDS medications after completion of Phase 1 studies (Byar, 1990). The activists furthered their lobby, organizing meetings with officials from the FDA and NIH, pushing for lower prices by pharmaceutical companies, and testifying before congressional committees (Berridge, 2002). These efforts culminated into the acceptance of the ACT UPs idea of parallel clinical trials by the two institutions and became effective immediately (Saalfield & Navarro, 1991). By earning such historical recognition, it is unquestionable that the AIDS activists demonstrated the might and effectiveness or their protests.
Second, the protests allowed marginalized groups to access health care. The effective of the protests regarding improving access to health care can be depicted in the specific demands ACT UP presented to the FDA. For instance, the protestors wanted the agency to shorten the drug approval process to facilitate the timely release of AIDS drugs. The fundamental contention of the movement was that with emerging epidemic illnesses like AIDS, testing experimental new therapies constitutes a type of health care (Byar, 1990). Therefore, every individual has a right to access health care. Additionally, the activists asked private health insurance firms and Medicaid to pay for experimental drug therapies (Epstein, 1995).
Another important demand by the movement was the inclusion of all affected populations at all phases of AIDS infection in clinical trials. The protestors call for the FDA to consider all groups affected by the disease when selecting participants for the clinical trials. These groups included women, people of color, children, poor people, patients using HIV medications, and gay people (Miller, 1996, Crimp, 2016). Besides that, the activists were concerned with the federal bureaucracy failures and harassment of community groups working to keep community members alive. Therefore, they wanted FDA to support these groups. All these demands the protestors fought for sought to ensure availability and ease of access to AIDS drugs especially for people living with this disease.
Recognition of the urgency and legitimacy of these grievances by the government institutions like the FDA and NIH justify that these protests were very effective. For example, ACT UP successfully pushed pharmaceutical companies to lower the prices of AIDS drugs. The movement exposed the inflated prices and the huge profits that pharmaceutical corporations and other related agencies earned from AIDS drugs (Epstein, 1995). The protestors revealed how the companies were primarily interested in making profits at the expense of lives. ACT UP members successfully urged companies to lower prices of AIDS medications to help individuals from different backgrounds and classes and who were living with the disease to easily access and purchase the drugs. Also, the activists launched effective lobby that managed to convince the FDA and NIH to consider a system of parallel trials for experimental AIDS therapies (Byar, 1990). This alternative approach allowed individuals excluded from clinical trials to access AIDS medications at the end of Phase 1 studies. Despite the arrest of many protesters, the activists successfully pursued their primary purpose of heightening awareness of the FDAS inability to break its bureaucracy and release experimental AIDS medications in time.
Third, the effective protests allowed the AIDS activism to spread not only across the US but also in other countries like the UK. The ACT UP members leveraged their mastery of the media to popularize their movement and increase awareness of the AIDS problem. In an effort to attract the media to their cause, ACT UP often developed effective campaigns, slogans, and messages such as SILENCE = DEATH, SEIZE CONTROL OF THE FDA, ACTION NOW, and WE DIE THEY DO NOTHING, among others (Berridge, 2002; Wright, 2013). By utilizing catchy phrases like these, the protestors hope individuals would realize that if the seriousness of the AIDS epidemic was not clearly articulated, dozens of people would continue succumbing to the disease.
Additionally, the activists often leveraged political art to help them articulate their purpose and grievances to the larger society. A good example of an artistic input to the activism was the premiere of the AIDS Quilt Songbook (Crimp, 2016). In the UK, activist organizations like the terry Higgins Trust were influenced by initiatives happening in the US and consequently begun to participate in social care and active AIDS activism for funding and education. Within a couple of years, many people engaged in active grassroots AIDs organizations throughout the UK (Berridge, V. (2002). Particularly, individuals battling with this illness became effective vehicles for increasing patient involvement in health care and promoting the right to choose their care, access to health records, and respect for confidentiality. By the end of the 1980s, the AIDS activism had not only spread across different nations but also many people living with and without the disease had become more knowledgeable about the nature and science of the AIDS epidemic (Crimp, 2016).
Another factor that shows how effectiveness the protests were is the fight against AIDS-related stigma. Battling with a health condition of unknown etiology and sobering mortality, people especially gay men and bisexuals were confronted not only with a threat to their health but also faced the stigma that immediately accompanied AIDS diagnosis. The limited knowledge of the nature and science of this epidemic in the 1980s in the US and UK can be said to have made the community to believe that HIV was a mark of death. The most adverse implication of the AIDS stigma were the different forms of discrimination particularly against the gay community. The stigmatization was perpetuated by different actors, such as the media and in medical circles (Wright, 2013).
The problem became worse in the UK when HIV/AIDS started to be associated with the gay and bisexual men, which was linked to elevated levels of sexual prejudice, including homophobia or biphobia (10). Growing negative attitudes toward the gay community peaked in the late 1980s culminating into the addition of Clause 28 to the Local Government Act 1986 that was applicable to England, Wales and Scotland (Cooper, 2006). Clause 28 was typically discriminative since it barred the local authority from promoting homosexuality or producing materials with the aim of fostering homosexuality (Cooper, 2006). This enactment was a serious blow to the gay population which was struggling to be heard in the society.
The activists organized radical, nonviolent campaigns to combat the problem on behalf of the whole gay and AIDS affected communities (Miller, 1995). The uprising can be depicted in the Boy George lyrics. In the historical song, the artist says they say to celebrate it (Clause 28). This line implies that the anti-gay were thrilled by the clause as it sought to criminalize a socially sanctioned behavior. In other lines, Boy George says Im not your rebel guy. You want to make us hated. You want to make use slide, no clause 28. Such radical ideas and messages of these first AIDS activists fueled the course of the protests that later came to effectively illustrate the need to consider the perspective of people leaving with AIDS in addressing the epidemic.
References
Berridge, V. (2002). AIDS and the rise of the patient? Activist organization and HIV/AIDS in the UK in the 1980s and 1990s. Medizin, Gesellschaft und Geschichte, 21, 109-24.
Boy George - No Clause 28. Accessed on https://www.youtube.com/watch?v=JcSkiS4_xDA
Byar, D. (1990). Design considerations for AIDS trials. JAIDS Journal of Acquired Immune Deficiency Syndromes, 3, S16-S19.
Cooper, D. (2006). Active citizenship and the governmentality of local lesbian and gay politics. Political Geography, 25(8), 921...
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