“HIV does not make people dangerous, so you can shake their hands and give them a hug:
Heaven knows they need it”-Princess Diana
A Note Before Starting
While reading this page, it is essential that you use your empathy. We are being constantly and increasingly desensitized as a society, but I ask you to try your best to put yourself in another’s shoes. Ask yourself, how would it feel to have been one of the people banned from their school for having HIV in the 1980s, or shamed by your doctors for having an “unhealthy gay lifestyle” after being diagnosed with HIV in the 21st century? I aim to use education and volunteer work to destigmatize HIV/AIDS within the U.S., and I urge you to become part of the effort and consider the impact you can have.
Why study HIV/AIDS?
Although the HIV/AIDS crisis in the United States reached its peak in the 1980s, it remains a global public health concern not only because of how widespread it is, but because of the stigma that continuously impacts patients. According to a UNAIDS survey done in 2017, there were approximately 36.9 million people living with HIV/AIDS worldwide, and of these, 1.8 million were children (<15 years old). Statistics like these, along with many personal stories I have read about living with HIV, prompted me to choose the stigmatization of people with HIV/AIDS within the U.S. as my topic for the 2019 GOA Catalyst for Change Conference.
Some of the questions I seek to answer with my research are: How did the stigmatization of HIV affect patients at the beginning of the epidemic, and how does it affect patients now? Could the destigmatization of HIV contribute to both an increase in patient quality of life and a decrease in the level of HIV? How can individuals help to destigmatize HIV on a local and national level?
The History of an Epidemic
The beginning of the HIV/AIDS epidemic in 1981 began with rare cases of a deadly lung infection in 5 previously healthy gay men. This startling discovery shook the world, leaving the first patients to fend for themselves against insurmountable societal pressures and stigma. As these initial patients died inexplicably, more and more cases began to crop up around the United States, and in each case, the patient was a gay male (Lerner, L., & and Wilmoth, B.). This prompted doctors to name the new disease GRID, or gay-related immunodeficiency, and an article was published in the New York Times referring to the disease as such.
At this point in history, there was very serious homophobia that existed throughout the United States, making it hard to live as a gay person, even before the existence of HIV/AIDS. A 1986 article entitled “Gay Youth and the Right to Education,” explains the ridicule and discrimination forced upon gay students during the 1980s, and how this incessant homophobia caused the majority of gay youth to drop out of school.
After the epidemic raised more national awareness, a 1988 medical journal wrote, “today, persistent fears about casual transmission of AIDS reflect a somewhat different, yet no less significant, social configuration. First, AIDS is strongly associated with behaviors which have been traditionally considered deviant. This is true for both homosexuality and intravenous drug use”(ajph.org). These “deviant” behaviors that were being linked to contracting AIDS led to the belief that AIDS was the wrath of God against drug users and homosexuality. Before this stigma, HIV/AIDS would have been treated similarly to cancer or other life-threatening diseases: like a battle. However, since the idea that HIV was an issue of moral fault, people living with the disease had little to no support systems, a fact that greatly impacted their quality of life.
By the mid-1980s, the United States was highly saturated with homophobia and faced with a disease that seemed only to occur in cases of men who have sex with men. The homophobia that existed at the time coupled with the ensuing panic prompted people to associate HIV with moral fault. This made it easier to distance themselves from HIV, and it provided justification that was in-line with their religious beliefs. However, the name GRID and the idea that the disease was a form of anti-gay karma had to be questioned as the case of 11-year-old Ryan White entered the national spotlight.
Case Study: Ryan White
On August 27, 1985, a 14-year-old young Ryan White is refused entry to his middle school due to his diagnosis of AIDS. He had contracted the disease through blood transfusions intended to help with his hemophilia. He faced insurmountable discrimination as his entire community, other than his mom, Jeanne White Ginder, rallied to keep him from going to school. Ryan finally succumbed to AIDS when he was 19 in April 1990, one month before his high school graduation and only months before Congress passed the legislation bearing his name in August 1990 – the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (Ryan White & Global HIV Program). This story stirred emotions nationwide and helped encourage activism to create better living conditions for HIV positive people as research for a cure continued. This story pulled at the heartstrings of the American audiences and was one of the first nationwide attempts to destigmatize HIV.
The Modern Corollary
In 2003, US President George Bush announced his plan for aiding the global health crisis: The President’s Emergency Plan for AIDS Relief (PEPFAR). This designated $15 billion to help aid generalized HIV/AIDS epidemics, mostly in Africa. This bill allotted funding and resources that have provided relief to those most affected by the epidemic. PEPFAR is still the system that our current government uses to allocate funds to the HIV/AIDS epidemic.
President Trump, on the other hand, has been notably absent from the global conversation. A brief provided by Sean Cahill, Ph.D., lists several sections of the Trump administration that have been discriminatory towards people with HIV. This compilation of quotes is courtesy of Trenton Staube.
“Failing to appoint a policy director for the White House Office of National AIDS Policy.” This position has been unfilled for two years, creating a lack of representation in the creation legislature for people with HIV.
“Firing the entire Presidential Advisory Council on HIV/AIDS (PACHA) in 2017 and then leaving it unfilled all of 2018.” Another discrepancy in representation within the President’s advisory.
“Proposing to change the way Medicare Part D formularies are set up, meaning that insurance companies have more control over which HIV meds people are allowed access to—and how much they cost.” This quote starts to delve into how poverty affects those living with HIV/AIDS, and while this is not the main focus of my project, it is still worth nothing. Limiting patient access to medicine that will relieve pain or help their condition is not only unjust and prejudiced, but it is also dehumanizing to the people that are being denied adequate medical care due to their HIV-positive status.
“Allowing the Peace Corps to dismiss members living with HIV and to deny HIV-negative members access to HIV prevention drug Truvada as PrEP, or pre-exposure prophylaxis” The Peace Corps is an organization that is independent to the government, and allowing them to restrict their membership on a basis of HIV status is discriminatory and inequitable.
Case Study: Banyan Tree Project
In one story, provided by the Bayan Tree Project, a 27-year-old Philipino male was taken to the ER for severe shortness of breath and was tested for HIV. After the tests came back positive, the patient explained that he had seen doctors who were homophobic about his “unhealthy gay lifestyle.” He was scared and avoided getting tested because he didn’t want to find out he was HIV-positive. According to Dr. Tri., who uploaded the testimonial, psychological stress can expedite the progression of HIV, so the stigma surrounding the patient’s illness worsened the condition of the patient, both physically and mentally. If anything, this speaks to the idea that while the 21st century may considered progressive, the stigmaizaiton has not gone away.
What can be done?
According to Hiv.gov, 700,000 American lives have been lost to HIV since the beginning of the epidemic in 1981. Many scientific advances have provided us with life-saving treatments such as the new highly active antiretroviral therapies (HAART). It is a sentiment commonly felt among both government officials and American people that now is the time to put an end to the epidemic. I believe that it is important to provide better resources to communities affected by HIV that will improve patient quality of life and educate others around them.
What can individuals do? It is important that we not only donate money to relief organizations, but we also actively engage with the problem. Although it is still helpful for people to donate to causes such as UNAIDS, it is critical that people involve themselves more directly with the issue. This will help us to humanize the issue, while helping those in need. Some examples of volunteer organizations within the U.S. are:
- San Francisco AIDS Foundation
- AIDS Alabama
- The AIDS Institute
So, what can be done on a larger scale? What can communities and the nation at large do to make this society a better place for people with HIV? There is so much that the government and communities at large can do to improve life for people with HIV/AIDS, but I would like to look specifically at healthcare access and bias training. I have addressed healthcare in my current iteration of the problem section, but I think it is important to note that healthcare. Having access to the medications that patients need without having to battle their healthcare provider or decide between medication and rent will prove to them that they are still valued within their communities, and it will help to restore their sense of humanity. Healthcare is such a controversial issue, and while I could write an entirely different webpage on the necessity of universal healthcare, I want to leave my readers with a few questions.
How would you feel if you were diagnosed with HIV, and you could not afford proper medication under your inadequate Medicare coverage? What if you were told that not only was your fault that you contracted HIV for having sex or for using needle-injected drugs, but also that it was God’s way of punishing you for a ‘deviant lifestyle’? Would you feel like you are valued by society as a person separately from your HIV diagnosis? This ceases to be about politics as soon as it directly impacts living with HIV, and it already has. Secondly, I would like both the government and communities to be more involved in bias training for employees ranging from physicians to restaurant workers. I realize that this is a stretch and that it is impossible to cleanse the United States of all HIV discrimination, but in order to make progress we must first put in effort.
Thank you so much for visiting my page, and please consider using what you have learned to educate those around you on the importance of destigmatizing HIV, and check out volunteer organizations near you!