Erasing 30 Years of Fear
Feb 01, 2019
HIV. AIDS... Two acronyms that have sparked panic, miseducation, shame and misunderstanding across the globe over the past three decades. Once considered an immediate death sentence, those living with HIV/AIDS now live healthy, normal-length lives. However, there is still much to be learned and understood by those who are HIV negative. What is the disease? Where does it come from? How does it spread? For years, these basic questions were, and continue to be, bogged down by ignorance and fear-mongering. However, it’s possible that it won’t be this way anymore.
According to the Centers for Disease Control and Prevention (CDC), human immunodeficiency virus (HIV) is the virus that will lead to acquired immunodeficiency syndrome (AIDS) if left untreated. HIV attacks the immune system and leaves the body vulnerable to infections and certain cancers, such as a very rare cancer called Kaposi sarcoma (KS). The human body can’t get rid of HIV on its own, but medication greatly suppresses the virus and its ability to multiply and attack blood cells. HIV/AIDS spreads through unprotected intercourse, needle sharing and contact with contaminated blood. As of today, HIV medication is so successful that the body’s viral load (how much HIV is present in the body) may be reduced if the proper treatments are administered. But when HIV first appeared, this was far from the case.
The first reported case of HIV emerged in 1981 when the Morbidity and Mortality Weekly Report (MMWR) described a rare lung infection, Pneumocystis carinii pneumonia (PCP), diagnosed in five Los Angeles men. In addition to PCP, the report found that their immune systems were failing – the first official account of what would be named “AIDS”. Not much time passed from the date of its publication before all five men were dead. The same day as the report, Dr. Alvin Friedman- Kien alerted the CDC of recurring cases of KS in men in New York and California, noting that KS is associated with people with weak immune systems. Within the next few days, the CDC received reports of similar cases of cancer and infection across the country.
Thus began the AIDS epidemic, with the disease known at that time as “gay man’s pneumonia” and “gay cancer”. These terms, along with GRID (gay-related immune deficiency) deepened public perception that AIDS only affected gay men. It wasn’t until 1983 that the first case among women was reported, but this was likely due to delayed diagnosis influenced by miseducation and lack of awareness.
False information, stigma and fear surrounding HIV/AIDS are what drove the school board of Arcadia, Florida to bar Ricky, Robert, and Randy Ray, three young brothers with hemophilia (hindrance of the blood’s ability to clot) from attending school. The children contracted HIV through blood transfusions to treat their hemophilia. When the Ray family fought the school board and won, their house was burned down. This took place in 1987, three years after active efforts to improve government funding and support of the disease, accelerate research and humanize those who tested positive. Fueled by rampant homophobia, many individuals remained willfully ignorant of HIV/AIDS and the existing facts surrounding it, allowing children and adults alike to be targeted.
The government further stigmatized and alienated vulnerable communities by prohibiting funding for educational materials that appeared to promote homosexuality. Additionally, women and people of color weren’t given proper consideration and inclusion inside clinical research, leaving these demographics to the throes of misguidance. According to Avert, an organization dedicated to HIV education, one in eight people with HIV are denied healthcare due to prejudice. Individuals with HIV also fear losing their jobs if they disclose their status to explain missed work days due to doctor’s appointments.
The dismantlement of stigma against HIV/AIDS is in the best interest of public health. Stigma associated with HIV/AIDS puts vulnerable people at greater risk. Social isolation accompanies guilt and shame, leaving individuals afraid to get tested or seek treatment if they’ve already been diagnosed. When people are afraid to know their status, they risk the possibility of contracting the disease and it developing into AIDS, which is harder to treat and has a darker prognosis. Furthermore, individuals who don’t go for regular testing risk spreading the virus if they are HIV positive and don’t know it.
Elements that contribute to the social stigma of HIV/AIDS include the shame surrounding homosexuality, sex work, sex in general, drug use, and infidelity. Another is the belief that it is associated with death. Thanks to modern medicine, people with HIV are able to live lives as long as anyone without the infection, such as The Lisbon Patient - a Portuguese man with HIV who is 100 years old.
According to Medline Plus, there are five major medications for the treatment of HIV. Reverse transcriptase inhibitors break the life cycle of the HIV virus, preventing it from multiplying in the body. Protease inhibitors keep the virus from creating new infectious particles, while fusion inhibitors keep the virus from invading blood cells and integrase inhibitors keep HIV from making copies of itself. Multidrug combinations make two or more of the drugs into one. According to the CDC, among all individuals diagnosed with HIV in 2015, 60 percent achieved viral suppression. Viral suppression means the virus in the body is undetectable and untransmittable, and that the person can continue to live a healthy life as long as they stay on their medication regimen, also known as antiretroviral therapy (ART). Furthermore, a person who is HIV negative but believes they are at high risk of contracting the virus, whether through sex or intravenous drug use, pre-exposure prophylaxis (PrEP) has been proven to reduce the risk of infection by 92 percent when taken regularly, according to the CDC.
The images we’ve been fed of people sick and dying of a virus are scary. For decades, we’ve been unclear of how the virus spreads, who it affects, and where it comes from. However, the medical and scientific climate we currently occupy is much different now than in the 1980s. There is hope after an HIV diagnosis, and there are resources and education. No one living with this virus has to be alone or confused, and people who are HIV negative need not fear or hate people who test positive.
In the words of Michel Sidibé, the executive director of the Joint United Nations Programme on HIV and AIDS (UNAIDS), “Whenever AIDS has won, stigma, shame, distrust, discrimination and apathy was on its side. Every time AIDS has been defeated, it has been because of trust, openness, dialogue between individuals and communities, family support, human solidarity and the human perseverance to find new paths and solutions.”