Tag: HIV/AIDS

Silence = Death: ACT UP

The basis of this blog is How to Survive a Plague. The story and all direct quotes are from this documentary.

a sign from the 30th anniversary of ACT UP rally
01a.Start.March.ActUp.NYC.30March2017. Source: Elvert Barnes, Creative Commons.

“We’re in a PLAGUE”, shouts Larry Kramer.

A plague to an outsider looks differently to an insider, particularly one who battles symptoms every day. The plague Kramer shouts of is HIV/AIDS and its decimation of the homosexual community. Until I watched this documentary, I had not considered AIDS a plague because its label was an epidemic or pandemic. My perspective on the topic was limited by my understanding of another’s plight. My first recollection of learning about HIV/AIDS happened in the early 1990s when Ryan White, a hemophiliac, died and Magic Johnson, a heterosexual basketball player, made his announcement. I still remember how as a middle-schooler, I rationalized the knowledge someone a few years older than myself died while also anticipating the death of one of my favorite basketball players. At the time, I had no idea the millions who succumbed to AIDS would die after a lack of treatment for the disease; nor did I know of the group of radical activists shaking up the government and scientific community with demands for intervention. The individuals of ACT UP, through the coalescence of anger and non-violent direct action, took the on the burden of the dying community. How to Survive a Plague chronicles the 10-year fight for antiretrovirual medications (ARV) needed to both save the lives of those living with the disease and help end the AIDS crisis in the US.    

Greenwich Village in New York City was the epicenter of HIV/AIDS in the early 1980s. During its initial outbreak, the virus was widely considered a ‘homosexual’ disease. Hospitals offered no treatments and turned the dying away, placing blame and responsibility for the epidemic squarely on the victims’ shoulders. AIDS Coalition To Unleash Power (ACT UP) began “fighting for their lives, patients and their advocates took matters into their own hands.” The activists, labelled fascists rather than concerned citizens, began locally – at NY City Hall in 1987, six years into the pandemic.

Peter Staley, a bond trader on Wall Street at the time, insisted, “I’m going to die from this. This isn’t going to be cured” because without government trials or treatments at that point in time, all hope seemed lost. Hope arrived in a scientist named Iris Long, who offered her time to explain and teach members of ACT UP the ins and outs of the scientific community, arming them with medication and funding information. Survival became dependent upon knowledge of what needed to go into the body; therefore, forming the Treatment and Data Committee (T&D). The goal of T&D remained reading medical journal articles as a means of raising awareness while arming the members with terms and ideas for advocacy. The first medical treatment offered was AZT.

AZT, for many infected including Staley, proved more harmful than helpful. First, it cost $1000 per year. Second, it was not widely available. Third, side effects were unbearable in some cases. Lastly, it did not prevent any opportunistic infections from attacking an already weakened immune system. Robert Rafsky questioned, “What does a decent society do with people who hurt themselves because they are human? A decent society does not put people out to let them die because they have done a human thing.” By 1988, over 800,000 people worldwide died of AIDS-related complications. For members of ACT UP, there was a direct correlation between the loss of American lives to AIDS and the government’s failure to make medications accessibly affordable and safe. Overseas markets had accessible medications, but Americans bought medication on the black market—the “buyers’ club”, a desperate means of saving their lives while protesting government agencies. The buyers’ club stored and sold medications not approved by the US FDA, and provided information about HIV/AIDS related infections, including opportunistic infections.

The US FDA tested and marketed ARVs at a significantly slower rate than Europe—7 to 10 years versus 9 months respectively. While the FDA sat on their power to make, test, and market medications, deceased patients gathered into garbage bags and refused by funeral parlors; disregarded and denied dignity, even in death. In 1989, hope arrived again through a partnership with Bristol Myers and NIH as activists used platforms to bridge the gap between science and themselves by reaffirming the same goal: saving lives. NIH increased research priorities and allowed activists to participate in panels regarding trials and treatments. By 1992, the death toll worldwide was more 3,300,000 and a small sample of ARVs was ready to trial in the US.

The goal of ARVs is to suppress and halt the progression of the virus. In the 1992 trial, researchers found that over the course of a week, suppression of the virus occurred but did not remain in most patients. Fortunately, in one participant dubbed “Patient 143”, viral load suppression stabilized over time. Despite this small victory, 1993-95 became the most difficult for the activists. Internal splintering of ACT UP created a division of priorities which resulted in the founding of the Treatment Action Group (TAG). George H.W. Bush argued a change in lifestyle and behavior could stop the threat/spread of AIDS, yet he failed to conclude that it is irrational to believe that others should change their behavior, specifically LGBTQ community, without him changing his response to their requests, demands, and deaths. Additionally, Europe confirmed the ineffectiveness of the ARVs that were accessible at the time. This setback meant a reframing, restructuring, and reanalysis of the AIDS research scientific process.

TAG activists, together with the scientific community, focused on the possibility of a triple drug combination rather than a single drug solution. In 1995-96, the Lazarus effect began to take place in patients after 30 days on the medications. The antiretroviral therapy (ART) combinations arrived too late for millions including Ryan White; however, they sustain and give life to millions of others including Magic Johnson. The decision of ACT UP activists spawned justice for humanity, not just the LGBTQ community. Staley summarizes, “…just so many good people [died]… like any war, you wonder why you came home.”

This Wednesday, October 4 at Birmingham Museum of Art, 6pm, ACT UP activist Peter Staley will participate in panel discussion “30 Years of Acting Up”. The panel is a part of the One in Our Blood exhibition taking place around the city, including AEIVA and Birmingham Civil Rights Institute.

 

HIV and Human Rights

People and Places. Source: Ted Eytan, Creative Commons

The history of the HIV and AIDS epidemic started in illness, anxiety and mortality as the world encountered and handled a new and unidentified virus. It is commonly believed that HIV begun in Kinshasa, in the Democratic Republic of Congo around 1920 transmitted from chimpanzees to humans. The original earliest case where a blood sample could confirm the infection of HIV was from a blood sample taken in 1959 from a man living in the Kinshasa region.  Available records suggests that the rampant spread of HIV and contemporary epidemic started in the mid- to late 1970s. During the 1980s, the HIV pandemic spread across South America, North America, Australia, Africa and Europe. The progress and efforts made in the last 30 years to prevent the disability and mortality due to HIV have been enormous. Despite the tremendous improvements regarding HIV research and support, progress remains hindered by numerous challenges. Originally, HIV was identified and diagnosed in men who have sex with men, people who inject drugs, and sexually active people such as sex workers. HIV was perceived and declared a disease only deviant people get because they engage in inappropriate behavior; therefore, HIV and people infected with HIV have been subjected to a corresponding negative social image. Research and education has aided in countering the negative association of HIV transmittance. The CDC explains HIV transmittance takes place via “only certain body fluids—blood, semen (cum), pre-seminal fluid (pre-cum), rectal fluids, vaginal fluids, and breast milk—from a person who has HIV can transmit HIV.” People impacted by HIV, regardless of how it was transmitted, withstand constant stigmatization, discrimination and violations of their basic human rights. There is an inseparable link between human rights and HIV is now extensively acknowledged and accepted.

“Protecting, promoting, respecting and fulfilling people’s human rights is essential to ensure that they are able to access these services and enable an effective response to HIV and AIDS.”

-Avert Society

Human rights treaties and laws play an essential role in protecting the rights of HIV positive populations. The Universal Declaration of Human Rights (UDHR), Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), and the International Covenant on Economic, Social and Cultural Rights (ICESCR) are all important documents that thoroughly elaborate the rights of all people, which include HIV positive individuals.  Article 25 of the UDHR, Articles 10 – 12, and 14 of the CEDAW, and lastly Article 12 of the ICESCR all secure the human right of healthcare and the prevention, treatment and control of diseases. Finally, the ICESCR and the UDHR secures employment, cultural and community participation rights for individuals regardless of age, disabilities, illness, or any form of discrimination.

Human rights violations in the context of HIV

Access to health care services

In 2015, 36.7 million people are currently living with HIV/AIDS, with the majority of HIV/AIDS positive individuals– 25.5 million – living in sub-Saharan Africa. Today, in 2017, only 46% of HIV positive adults and 49% of HIV positive children worldwide are receiving treatment, with large gaps in access to HIV testing and treatment in Africa and the Middle East. Individuals living in low-middle income locations face constant financial, social and logistical barriers to accessing diagnostic services and treatment. Some of the main obstacles individuals of lower income families’ face include the high costs of medical services, the lack of local and nearby health care facilities, and the inability to leave work to visit the doctor. vert Society asserts that stigma and discrimination from community and family influences the utilization of HIV healthcare services by HIV positive individuals. Additionally, the criminalization of HIV is also significantly affecting the access to HIV health care services. In 2014, 72 countries have implemented laws that allow HIV criminalization. Criminalization laws are usually either HIV specific, or either HIV is just one of the diseases covered by the law. HIV criminalization laws normalize, instigate and allow discrimination and stigma towards HIV positive individuals. HIV criminalization laws and socio-ecological barriers undermine HIV prevention efforts and do not decrease the rates of HIV.

Our Lives Matter !! Anti-LGBTI Laws Stall HIV Prevention. Source: Alsidare Hickson, Creative Commons

Criminalization of men who have sex with men (MSM)

Currently, 76 countries around the world continue to criminalize same-sex conduct. Having these laws set up really discourages MSM and the public to get tested for HIV, transition into treatment, and disclose their information due to possible discrimination and arrest. A comparison between nations with anti-homosexuality laws and nations without such law shows considerably higher HIV prevalence rates among MSM in countries with anti-homosexuality laws compared to nations without such legislation. For example, Jamaica has strict anti-buggery laws but has a prevalence of HIV in over 30% of MSM, compared to Cuba that lacks anti-buggery and has a prevalence of HIV in less than 5% of MSM. These laws also make it particularly problematic for organizations providing sexual health and HIV services to reach men who have sex with men. Further research is needed to clarify the correlation between the criminalization of same-sex conduct and rates of HIV.  The criminalization of MSM ultimately ignores the fact that HIV can be transmitted through various ways such as unintentional exposure, mother-to-child, and non-disclosure of HIV status which results in individuals not seeking health care services due to the fear of people assuming HIV was transmitted through a different route than how it was actually transmitted.

Gender Inequality

HIV disproportionately affects women and young girls because of unequal cultural, social, and economic standing in society. Gender based violence (GBV) is normalized in many societies. GBV such as rape, trafficking and early marriage makes it more difficult for women and adolescent girls to protect themselves against HIV. Women do not have power over sexual intercourse encounters. Women, in many cultures, are economically dependent on their male counterparts, making it increasingly difficult to choose their lifestyle choices. Additionally, due to the imbalanced gender power dynamic, women do not have control over family planning services, sex-based community rituals, or the choice to participate in safe sex. Studies reveal the impact of gender-based discrimination and HIV. According to one study, women living in Sub-Saharan Africa, on average have a 60% higher risk of HIV infection than their male counterparts. Another study analyzed the role of gender power imbalance on women’s ability to discuss self-protection against HIV/AIDS in Botswana and South Africa. Results concluded that “women with partners 10 or more years older than them, abused women, and those economically dependent on their partners who are less likely to suggest condom use to their partners. Gender power imbalance also influences men’s inclination towards refusing to use the suggested condom.” There is a great need to focus on women education, empowerment and self-confidence to suggest condoms, and lastly to educate and encourage men about safe sex. Gender inequalities towards women are addressed in the CEDAW; therefore, publicly and legislatively addressing the issues could significantly reduce HIV.

Millions of people have lost their lives fighting to make sure HIV positive people are able to live a long, healthy and quality filled lives. Even though we live in a country that does provide HIV healthcare services, the prevalence of HIV in the USA is still relatively high. The Human Rights Campaign reported in 2014 that Birmingham, Alabama had one of the highest rate of infection in the nation; however, the latest CDC report Birmingham is presently 12th, citing a myriad of reasons including a lack of sex education. We have and opportunity and need to stand up for each other, advocating for education and equality. There are various ways to get involved in advocating for human rights and HIV in our Birmingham community, including volunteering at local clinics: 1917 Clinic or Birmingham Aids Outreach.  If you’re sexually active, you can help prevent the spread of HIV by knowing your status, getting tested, and talking openly about HIV. Constructive conversations aid in removing the stigma and fear attached to HIV because it becomes a part of the social discourse. An HIV/AIDS prognosis is a life changing event, not a life ending moment.