(This article was written for my internship at the Yoair Blog)
As of 2022, 39 million people worldwide are believed to have HIV or aids according to the CDC and UNAIDS. Since the first known case recorded in 1959, stigmas, false narratives and negative opinions surrounding the disease continue to occur. Worldwide, a difference of opinions between people and cultures has impacted the effectiveness of the disease in claiming lives. In the United States, especially in the 1980’s, the American people were split on their opinions and views. Around 50% of Americans held a more negative view and understanding towards HIV/AIDS and those with the disease. This stigma does not occur only in the United States, as these opinions and views are prevalent across continents. This article intends to trace to identify the origin of stigma towards HIV/AIDS and combating it. (add more to this sentence)
Discovery of HIV/AIDS
It should be noted that a common theme amongst those who perceived these people in a negative way because of their illness was due to individual beliefs.
(It should be noted that a common theme amongst individuals with negative perceptions towards HIV/AIDS patients is due to individual beliefs, not facts rooted in science)
The discovery of a disease that has claimed the lives of around 40 million people dates back just 40 years. In June 1981, a team of physicians reported several Los Angeles individuals (noted as healthy) had acquired Pneumocystis Pneumonia. Pneumocystis Pneumonia is a “serious infection that causes inflammation and fluid buildup in your lungs”(WebMD). This type of infection is predominantly found in individuals with a weakened immune system, a symptom of HIV/AIDS. By the time of the report, two individuals had died from their infections.
A second report in July of 1981 reported 26 patients, all men, with infections like Kaposi sarcoma and Pneumocystis Pneumonia. This led officials to believe in the existence of a new deadly disease we now know to be AIDS. This was confirmed by the CDC in the fall of 1982 after continued increase in reports of patients dealing with specific infections. During this time, a main occurrence between individuals being reported sick were men who had sex with other
The beginnings of treatment
Lack of acceptance, understanding and treatments through the early years of the HIV/AIDS pandemic cost many patients their lives. The FDA claims during the early 1980’s, they helped act against fraudulent cures designed to prey on patients with HIV. Because of the novelty of the disease in the 1980’s, treatments, if any, were limited. A breakthrough antiretroviral drug in 1987, called azidothymidine (AZT), helped to begin proper treatments of HIV. The drug, though helpful, was not a cure. Add on an expensive price tag, side effects, and an ever-changing/mutating infection, researchers began looking for alternative drugs/treatment.
The FDA began approving more antiretroviral drugs by the mid 1990’s to combat the change and mutation of the virus. Researchers eventually learned that combination therapy to treat HIV/AIDS was more effective than patients only taking one specific drug. The usage of a triple-drug therapy known as highly active antiretroviral therapy (HAART) became very effective. Authors of the Clinical Infectious Diseases conducted a 10 year study of the effectiveness of HAART from 1996-2006. They concluded the use of HAART was highly effective “in reducing mortality among children and adolescents infected with HIV.”
Discovery continued
During the discovery of HIV/AIDS, people were unaware the two were in any way connected.
In 1983, French Virologist Luc Montagnier and his team discovered and identified the most common type of HIV, HIV-1. This discovery came after Montagnier was sent the swollen lymph nodes of a homosexual patient with symptoms of Pre-Aids. Montagnier and his team found that the nodes were infected with a retrovirus we now know as HIV-1. Through this discovery, it was found that HIV was the root and cause of AIDS.
Prior to the discovery of HIV in 1983, at least 1 person is recorded to have tested positive for HIV-1. “The earliest identified isolate of HIV-1 comes from an unknown male in Kinshasa, Congo, in 1959. The first identified patient with HIV infection and AIDS was a Scandinavian man in the 1960s, who had visited west-central Africa”(2000). Before this, a physical, biological introduction to the infection in humans occurred some time in the late 1800’s early 1900’s. Known in non-human primates as simian immunodeficiency virus, the infection crossed over to humans from chimpanzees.It is believed that hunters came into contact with infected chimpanzee blood. Because of the lack of knowledge of HIV before its discovery, other illnesses were attributed to patients suffering similar symptoms.
Worldwide, the most common type of HIV individuals are infected with is HIV-1, which is around 38-39 million infected people. Individuals with HIV-2 are predominantly found in West Africa, where the disease is considered endemic. Around 1-2 million people are believed to be living with HIV-2 globally. HIV-2 is not considered as easily-transmittable as HIV-1. HIV is most commonly transmitted through sexual intercourse. There are other ways for HIV to be transmitted, such as through blood contamination, sharing of needles and syringes, or babies who are born or breast-fed by a mother infected with HIV.
Global Perspective and Stigma
A common misconception of HIV is that people are born with HIV, or have a genetic predisposition to HIV. Though research suggests your genetic makeup makes up a 42% chance of susceptibility to HIV, you would still need to be exposed to the virus first. To this day, there continue to be misconceptions surrounding the transmission of HIV/AIDS. A list, compiled by Stanford Health Care states that HIV/AIDS CANNOT be spread through: Saliva, Sweat, or Tears, Casual contact, such as sharing food utensils, towels, and bedding, Swimming pools, Telephones, Toilet seats, Biting insects (such as mosquitoes)
Early developments and understanding of HIV/AIDS in the 1980’s created skepticism in the validity of transmissibility of HIV. This skepticism turned into fear, criticism, stigma, prejudice and discrimination towards individuals diagnosed with HIV/AIDS. As noted earlier, a specific trend in individuals diagnosed with HIV/AIDS were men who had sex with other men. Because most of the patients being identified were gay men, negative public reactions, opinions, and discrimination began to occur.
During the 1980’s in the United States, public opinion of gay men and homosexuality was still rather unfavorable. Several polls conducted by the Gallup poll in the U.S during the 1980’s showed separate results, but a common theme. Half of the American population expressed judgemental views towards people with HIV/AIDS. 51% agreed “it was people's own fault if they got AIDS”. 46% stated “most people with AIDS had only themselves to blame”. Lastly, “Between 43 and 44% of Americans in 1987 and 1988 believed AIDS might be God's punishment for immoral sexual behavior.”
Closer look into global perspectives
Negative, judgemental sentiments towards individuals who contracted HIV/AIDS became apparent globally, not just in the United States. Across the world, discrimination of patients with HIV began to occur for various reasons. Some of this reasoning includes general perception of homosexuality, particularly gay men. Although acceptance of homosexuality has grown, different countries and cultures are wary and sparse in their acceptance. This has resulted in prejudice and discrimination towards HIV/AIDS patients. Take, for example, separate research conducted which showed the Stigma of People with HIV/AIDS in Sub-Saharan Africa and Kenya. Let us deep dive into specific examples globally where the perspective on HIV/AIDS is rather negative and judgemental.
Sub-Saharan Africa
As stated earlier, stigma towards individuals with HIV/AIDS results from a multitude of factors. Some factors include “cultural constructions, stereotypes and specific beliefs, access to and the role of antiretroviral therapy, religion, and gender”(2009). In the Sub-Saharan region of Africa, several factors are prevalent and play a role in continuing stigma and discrimination. Religion and issues towards gender and sexuality are the biggest reasons discrimination and stigma occur within the area.
Religion plays an important role in the lives of many within the Sub-Saharan region of Africa. Within the area, religion and churches have provided support as well as guilting and shunning individuals with HIV/AIDS. “One of the strategies used by some churches to regain their lost moral authority is vigorously linking sexual transgressions and AIDS with sin and immorality”(2009). As a result of the prominent role religion plays in the area, acceptance of homosexuality is uncommon. This plays a role in continuing stigma and discrimination of HIV/AIDS. Despite negative association at times, individuals with HIV/AIDS in the region stated faith and religion were crucial in coping. Predominant issues with gender and sexuality in the area is due to the belief in previous longstanding values.
“In Sub-Saharan Africa, women are traditionally expected to bear children, cook for the family and submit to the sexual desires of their husbands”(2009). Misconception in the area related to the origins of the disease plays a factor in continuing stigma. Those within the region believe HIV/AIDS as well as transmission occur from heterosexual contact as a result of”indecent sexual behavior”(2009). Statistically in the region, “56% of women are commonly viewed to be targets of stigma compared with 12% of men”(2009). Women in the region are also blamed as the carriers of the disease instead of men. As a result, people in the area living with HIV/AIDS were reluctant to identify themselves to medical professionals. “Fears of stigmatization, of victimization, of confidants spreading the word, of accusation, of infidelity, and of abandonment were all noted to be barriers to disclosure”(2009).
Impact in Kenya
Stigma and discrimination towards individuals with HIV/AIDS within the Sub-Saharan Africa region is apparent. This occurs, as stated earlier due to a variety of reasons. Another research study titled“HIV/AIDS Stigma and Refusal of HIV Testing Among Pregnant Women in Rural Kenya” delves deeper into the impact on individuals with HIV/AIDS. Researchers conducted a cross-sectional study of pregnant women attending antenatal clinics in Kenya. (Conducted from 2007-2009). The study showed that rates of anticipated HIV/AIDS stigma was high in women who were interviewed. Research within the study explained anticipated stigma in this case as the anticipation or expectation to be discriminated against because of a positive HIV test and the disclosure of that information. As a result, some participants who cited suffering from anticipated stigma were refusing to be tested for HIV. Socio-demographic characteristics were also cited as reasoning for refusal to be tested for HIV.
Hong Kong
In Hong Kong. research done from 2003 to 2004 compared public stigma towards HIV/AIDS, SARS, and Tuberculosis. Through the study, results showed that stigma towards HIV/AIDS was higher than SARS and Tuberculosis. “36.8% of the participants endorsed stigmatizing perceptions towards HIV/AIDS which was significantly greater than those towards SARS (3.7%) and TB (4.9%)”(2006).
What is most striking and apparent from the research stated is that there is a direct connection between stigma towards these diseases and the knowledge known about them. It should be noted that a common theme amongst those who perceived these people in a negative way because of their illness was due to individual beliefs. “It (HIV/AIDS) is often associated with intravenous drug use, sexual promiscuity, and homosexuality/bisexuality; behaviors that in themselves are considered to be deviant and are subject to disapproval by the society”(2006). Despite the age, education, and salary differences between participants interviewed, public opinion towards these diseases were still negative.
Iran
In Iran, another research study interviewed patients with HIV/AIDS to discuss how stigma and discrimination affects their lives. Though a much smaller research pool, results were still equal to the previous research articles referenced. Patients with HIV/AIDS stated they dealt with stigma and discrimination in their day to day lives. This impacted them into believing they would face rejection from family and relatives, friends and colleagues. Like many other individuals, participants spoke about how stigma and discrimination forced them into self-isolation.
Conclusion
Stigma and discrimination plays a crucial role in impacting how HIV/AIDS is perceived throughout society. Despite an increase in treatments, research, technology and testing, misconceptions continue to influence stigma. When AIDS was identified in 1981 in the United States, public perception was skewed. Due to most of the patients being gay men, reasoning as to the origins of the disease were filled with prejudiced beliefs. Americans believed gay men only had themselves to blame for the diagnosis, even believing it was a punishment by God. This belief and narrative did not only occur in the States. We covered in this article how other countries held and maintained prejudiced and discriminatory views towards individuals with HIV. In the Sub-Saharan Africa region, cultural perception of the disease is misguided in belief of outdated values.
Through the study covered, the number of refusals for HIV testing within the clinics had dropped from 16% to 2%. Although educational efforts continued to increase in the Sub-Saharan region, there are many barriers that continue to influence the impact of HIV in Africa. In Kenya, some pregnant women refused to be tested for HIV out of fear of being shamed by their spouses and their community. This was referred to as “anticipated stigma”. This phenomenon occurred in Iran as well. Iranian patients interviewed stated they believed family, relatives, friends, colleagues would reject them because of their positive HIV/AIDS status. This forced them into self-isolation so as to avoid potential rejection. Overall, the list of research comparing stigma is long and varies country-by-country, but the results are similar. Public perception of HIV/AIDS is skewed and impacted because of false narratives, lack of information/resources, and socio-cultural factors.
Works Cited
Source 2: https://www.cdc.gov/hiv/basics/hiv-
Source 3: Ngozi C. Mbonu, Bart van den Borne, Nanne K. De Vries, "Stigma of People with HIV/AIDS in Sub-Saharan Africa: A Literature Review", Journal of Tropical Medicine, vol. 2009, Article ID 145891, 14 pages, 2009. https://doi.org/10.1155/2009/145891
Source 4: Winnie W.S. Mak, Phoenix K.H. Mo, Rebecca Y.M. Cheung, Jean Woo, Fanny M. Cheung, Dominic Lee, Comparative stigma of HIV/AIDS, SARS, and Tuberculosis in Hong Kong, Social Science & Medicine, Volume 63, Issue 7, 2006,Pages 1912-1922,ISSN 0277-9536, https://doi.org/10.1016/j.socscimed.2006.04.016
Source 10: https://news.gallup.com/vault/259643/gallup-vault-fear-anxiety-during-1980s-aids-crisis.aspx
Source 11:
Source 15: https://www.webmd.com/hiv-aids/aids-hiv-opportunistic-infections-pneumocystis-pcp-pneumonia
Source 16: Lucas S. (2000). The river: A journey back to the source of HIV and AIDS. BMJ (Clinical research ed.), 320(7247), 1481A.
Source 19: Powell, T.R., Duarte, R.R.R., Hotopf, M. et al. The behavioral, cellular and immune mediators of HIV-1 acquisition: New insights from population genetics. Sci Rep 10, 3304 (2020). https://doi.org/10.1038/s41598-020-59256-0
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