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Julia Botvinov
Professor Babcock
English 137 H
4 November 2018

Perception of HIV and AIDS: A Paradigm Shift

Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome

(AIDS) have swept the lives of millions globally. HIV is a virus that attacks the body’s immune

system cells, CD4 cells, or also known as “T cells”. Once infected, the patient may experience

flu-like symptoms for a couple of weeks and then seemingly return back to being healthy. Due to

the latency of this virus’ affects, many do not realize they are getting sicker. When HIV remains

untreated and the T cell count becomes too low, the person is considered to have AIDS. At this

point in the disease, a small infection that a person with a healthy immune system might easily

fight off, becomes an opportunistic infection which can often be fatal.

Nowadays, the causation, prevention, and treatment of HIV/AIDS are all things many

people are aware of. However, misconceptions about the disease have rocketed and descended in

the United States over the past 40 years. As a result of scientific research and the media’s

representation of its findings, our historical understanding of HIV/AIDS has undergone a multi-

faceted paradigm shift that has changed how medical and social communities respond to the

epidemic.

1981-1982: The Onset

In 1981, scientists and doctors alike shared confusion about a ‘mysterious illness’ that

lead to the death of multiple homosexual men concentrated in Los Angeles and New York. These

men suffered from either a type of pneumonia or Kaposi’s Sarcoma (a rare skin cancer) that
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tends to present in patients that are intensely immunosuppressed. In these early reports of the

pneumonia incidences, the CDC stated, “The occurrence of pneumocystis in these 5 previously

healthy individuals without a clinically apparent underlying immunodeficiency is unusual”

(Gottlieb, 1981). Similarly, in CDC reports of the skin cancer cases, this sort of language

applied, stating their circumstances as abnormal and ambiguous as well. The whole outbreak was

perplexing to doctors, though the one commonality they found amongst the men, was that they

identified as gay and were sexually active. As this was the only evidence they had, the term

‘GRID’ arose, standing for ‘Gay-Related Immune Deficiency’. While this title was simply a

reflection of the findings derived from research in the medical community, the rest of America

exploited the politically incorrect name, resulting in homophobia and violence.

Genuine misunderstanding amongst the medical community lead to even more ignorant

responses against gay people in the media and subsequently, the public. Homosexual men were

often taunted, mistreated, and even physically assaulted because of their supposed responsibility

for the circulation of the syndrome. Headlines were commonly phrases such as “Alert over ‘gay

plague’” and “‘Gay plague’ may lead to blood ban on homosexuals” (Avert.org, 2018). Majority

of everyday civilians did not read scientific journals and databases to get their information

regarding medical advances. They read the newspaper, watched the television, and listened to the

radio. This meant that conveying important medical information to the public was in the hands of

journalists who usually composed pieces with the main goal of getting attention and high ratings,

rather than being educational. The climate during this time was homophobic and the incoming

epidemic along with the media’s use of language surrounding it was fueling the predominant

violence that was occurring. With the recent Upstairs Lounge gay bar shooting in 1973 and

similar violence against gays following, Seb Starcevic, a writer for the Daily Telegraph, reported
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the era was a time where pastors openly proclaimed that AIDS “was a divine plague on

homosexuals”. The media’s poor portrayal of the research surrounding the crisis consistently set

the public back in the shift between ignorance and awareness for three more years.

1982-1985: Exploration

In the early to mid-80s, incoming data and research had slightly broadened scientists’

understanding of the virus. The term ‘AIDS’ was finally being used as opposed to GRID.

Researchers realized people besides homosexual men could obtain this illness, but the confines

were still limited. The CDC released that the four “risk factors” were men who have sex with

men, people who use intravenous drugs, those of Haitian origin, and people who suffer from

hemophilia A (amfAR.org, 2018). These new findings were helpful, but it was not until 1983

that HIV was discovered and found to be the cause for AIDS. This is because doctors like Drs.

Francoise Barr-Sinoussi and Luc Montagnier, and Dr. Robert Gallo separately found the

retrovirus in their patients, and eventually realized they were the same thing. Once, HIV and

AIDS were established as correlated in the medical community, the next leap in research came

about. According to HIV.gov, “In the September 9 MMWR, CDC identifies all major routes of

HIV transmission—and rules out transmission by casual contact, food, water, air, or

environmental surfaces”. This relieved the science community, because such an acute illness was

not highly contagious, therefore the epidemic could be more easily regulated. With the thought

of being in imminent danger out of mind, the public should have had the motive to change their

perspective as well, but unfortunately that was not the case.

While more discoveries were being made, the media remained unhelpful, leading the

public and even political enforcement to remain ignorant, useless, and somewhat detrimental in
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the crisis. At this point in time, society lagged significantly behind the medical advances that

were being made. Replacing phrases like the ‘gay plague’, the term ‘‘4H’ Disease’ --

representing homosexuals, heroin users, Haitians, and hemophiles -- was exploited in the media,

turning effective research into ammo used against at-risk groups. In a notable example in 1983,

the CDC decided to ban people who fall under the 4H identifiers from donating blood for safety

purposes. This move came from a non-phobic place, but the public generated opprobrium against

the Haitian community. Even with New York City health administration removing Haitian

people from the group of high-risk persons, federal agencies still banned them from blood drives

for another eight years (Washington, 2010). While the public was one group to be misinformed,

federal organizations were another, which caused even greater negative effects than before. New

York was a highly populated state where this lack of awareness amongst officials caused grave

effects. However, during the time of the crisis, Ronald Reagan was president of the United States

and his poor handling of the situation had arguably caused even worse ones. According to writer

of the New York Times, Philip Boffey, “When told that the top AIDS scientist had said the

Administration's budgets were ‘not nearly enough at this stage to go forward and really attack the

problem,’ Mr. Reagan replied: ‘I think with our budgetary restraints and all it seems to me that

$126 million in a single year for research has got to be something of a vital contribution’”. In this

case, Reagan played the role of both the media and public. Even though he was getting his

information from other sources like most people, he was also the influential face that many of the

public looked up to to form their opinions on the crisis. President Reagan’s insufficient efforts

towards the crisis was controversial; he was opposing the shift towards understanding that many

are thankful for today. His inability to properly handle the epidemic set the public back in

keeping up with the advances that the medical community had worked hard to accomplish.
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Luckily, the media soon repaired its ill effects and started contributing towards the public shift

that is now recognized.

1985-1994: Growth

While AIDS was the leading cause of death in the mid-80s to early 90s, antiretroviral

drugs started to surface, leading to better statistics. Zidovudine, or AZT, was the first drug

approved for use by the FDA that treated HIV, prolonging the life of its users. However, this

drug cost $10,000 for a one-year supply, making it the most expensive drug in history

(amfAR.org, 2018). This caused discord between the medical community and its’ patients over

the insufficiency in treatment processes. Drug research, trial subject selection, and many other

factors were points of this argument. But skepticism regarding the speed and sincerity at which

the investigations ran were outstanding. Placebo based studies were considered unethical because

this left many patients’ chance at life in the hands of scientists. As tensions ran high and sick

people became more desperate, buyers clubs emerged. These were non-profit groups which

consisted of patients who contributed money to obtain unapproved drugs to help potentially cure

themselves. The growth in popularity of buyers clubs set researchers back slightly, because

patients would turn away from their care and trials, something they found inadequate. This

caused getting more drugs tried and approved to be increasingly difficult, which in hindsight, is

quite counterintuitive. Even with the drawbacks, the conducted research persisted and HAART,

an antiretroviral therapy for HIV patients became obtainable in 1990. This changed the fate of

those held in the tight grip of the horrible crisis as “death rates began to decline after multidrug

therapy became widely available. The number of deaths has since dropped from 38,780 in 1996

to 14,499 in 2000” (Nall, 2018). Even though lots of pills, regulation, and money went into it, the
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illness can be monitored, and symptoms can be dormant. This significant improvement in

treatment has helped remove the stigma that HIV/AIDS is a death sentence.

Although advances on the crisis have been steadily shifting positively on the scientific

front, the public finally started to catch up through press. One day in the late 80s, the people of

lower Manhattan woke up to see the phrase “SILENCE = DEATH” plastered all throughout the

city. It was then that a man named Larry Kramer began what is now the largest AIDS activist

group there is, known as ACT UP. Writer for New York Magazine, David France, even states that

the non-profit organization “redrew the blueprint for activism in a media-saturated world,

providing inspiration for actions like Occupy Wall Street”. This shows how Kramer and his

colleagues took the press by the horns, and rerouted what perspective the media was going to

take on the epidemic. The concept that HIV/AIDS was a collective battle society needed to face,

rather than a weapon to use against others was the overall message that helped revolutionize the

crisis.

Around the same time, numerous celebrity-related events allowed society’s perspective to

change. In 1985, actor Rock Hudson died of AIDS. Hudson was an icon, known for his good

looks and leading performances in numerous Hollywood films. But, the same year of his death,

he publicly admitted that he was a victim of the horrible illness. At the time of his press release,

“his publicist Dale Olson told the press that ‘it has been his desire that if he can do anything at all

to help the rest of humanity by acknowledging that he has this disease, he will be happy to do

that’” (Dagan, 2015). Fortunately, Hudson achieved just that by showing society that anyone can

contact the virus without proper precautions. While his sexuality was speculated about and most

recount him as bisexual, he still broke the stereotype that many had about AIDS victims. Hudson
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was a film star many looked up to, and associating that with the courage to speak out about his

condition brought attention to many.

This was just the start, as many celebrities shortly followed suit. Only two years later, an

image of Princess Diana shaking hands with an AIDS patient was released to the press. In the

photo she was not wearing gloves, proving that she was not afraid of skin-to-skin contact. This

simple yet effective effort served as a learning moment for society. It was revolutionary

facilitating the transformation of understanding HIV/AIDS one step further.

Lastly, and considerably one of the most effective celebrity-related events that made

history, was famous NBA basketball player, Earvin “Magic” Johnson Jr.’s admission to having

HIV in 1991. His name was already a household one at the time, so associating the illness with

him was monumental, bringing the conversation about it into every family. According to John

Sides from the New York Times, in the same year of the celebrity going public, a “poll in which

respondents were asked to name a celebrity with AIDS. Approximately 50 percent named Mr.

Johnson”. This brought awareness and understanding of HIV into everyone’s lives. Similar to

Rock Hudson, Johnson pushed the stereotype that people with AIDS are only gay men with drug

addictions away, even more so because he was known to be heterosexual. He was noted to have

had sexual encounters with many women at the height of his fame, which was rather informative

and provided more insight as to the ways one could contract HIV. Even after his news release,

Johnson was still seen playing basketball, a contact sport, on live television. Seeing this, many

people finally understood that the disease could not be obtained strictly through sweat (unless the

sweat was contaminated with HIV positive blood).

Ultimately, the strongest development from society came in those ten years, as a response

to the media’s use of representing the illness in an accurate manner. Besides ACT UP and the
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key celebrity events, numerous other platforms used their power to shed light on the crisis and

struggles of suffering from HIV/AIDS. The musical Rent was first performed in 1994 and spoke

openly about the illness, using four characters who have contacted it, as a voice for those too

afraid to speak up. The MTV show Real World featured Pedro Zamora, a gay man who was

known to be one of the first to openly have AIDS while the show was airing and humanize the

sickness. Finally the research that was discovered in scientific labs was utilized by press for the

betterment of HIV/AIDS awareness. With knowledge representing power, and power being

found in numbers, a strong force was put together by the public after this media representation,

eventually helping to combat the crisis.

1994 - Present: Shift Complete

From the mid-90s on, the shift from utter cluelessness to accurate understanding of

HIV/AIDS was achieved. In 2012, Daily pre-exposure prophylaxis, or PrEP, was released for

those who were at risk of contracting HIV. This drug was a major success, as it reduced the

chance of getting HIV from sexual intercourse by 90 or more percent (HIV.org, 2018). As for

society, this disease is something that many are informed of. In many high schools throughout

the country, discussing HIV/AIDS is in the curriculum for their health sexual education courses.

At Pennsylvania State University, and many other schools, free HIV blood tests are given on

campus. This opens up the conversation around AIDS, while also providing care for those who

are or feel at risk. While the medical research surrounding the shift was obviously pertinent,

most people tend to remember the media influences that go along with it. Studies show “six in

ten Americans say most of what they know about HIV/AIDS comes from the media” (Kff.org,

2011). This highlights the value the press can have on something as serious as this illness. Even
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as recent as 2013, the movie Dallas Buyers Club was released. Superstar Matthew

McConaughey portrayed Ron Woodroof, a man who finds out he has HIV and starts his own

buyers club in order to save his own life and others in similar circumstances. Opportunities to

obtain knowledge about HIV present itself to the public in numerous ways. Currently, pamphlets,

advertisements, YouTube videos, documentaries, and sources on the internet, in addition to in-

person education about the disease, show how society has not only come to understand, but also

continues the spread of knowledge about HIV/AIDS.

The journey starting in 1981 until present day has been a immense one in both medical

and social fields. The media was utilized as a link between the two fields, and although initially

was inhibiting the positive shift, eventually became the glue that helped it come together.

Analyzing the effects media representation had on the societal shift involving the crisis is

important for the future. As history tends to repeat itself, following an improved protocol can

limit the amount of suffering people endure. In conclusion, without scientific research and the

media’s depiction of its discoveries, the paradigm shift between how medical communities and

society react to the HIV/AIDS epidemic would have never occurred.

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Works Cited

01, 2011 Published: Jun. “HIV/AIDS at 30: A Public Opinion Perspective.” The Henry J. Kaiser
Family Foundation, Kaiser Family Foundation, 11 Nov. 2013,
www.kff.org/hivaids/report/hivaids-at-30-a-public-opinion-perspective/.

“A Cluster of Kaposi's Sarcoma and Pneumocystis Carinii Pneumonia among Homosexual Male
Residents of Los Angeles and Range Counties, California.” Centers for Disease Control
and Prevention, CDC, 18 June 1982,
www.cdc.gov/mmwr/preview/mmwrhtml/00001114.htm.

“A Timeline of HIV and AIDS.” HIV.gov, US Government, 22 Oct. 2018,

www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline.

Boffey, Philip. “REAGAN DEFENDS FINANCING FOR AIDS.” The New York Times, The
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France, David. “Pictures From a Battlefield.” NYMag.com, New York Media, 25 Mar. 2012,
nymag.com/news/features/act-up-2012-4/.

“Homophobia and HIV.” AVERT, AVERT, 23 Apr. 2018,

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Nall, Rachel. “The History of HIV and AIDS in the United States.” Healthline.com, Healthline
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Sides, John. “Magic Johnson and Public Opinion on AIDS and Sex.” The New York Times, The
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