HIV- Three Decades of Public Reaction

HIV – Three Decades of Reaction

Michael Bell

University of Pittsburgh

 

HIV- Three Decades of Public Reaction

The first recognized cases of HIV occurred during the early 1980’s.  A large group of gay men in New York City and California suddenly began to develop opportunistic infections and rare cancers that were resistant to treatment. At the time, HIV did not have a name but it was soon obvious that these groups of men suffered from the same illness.  The discovery of the Human Immunodeficiency Virus was made soon after.  HIV caused widespread panic initially, particularly in the gay community and also in the medical community. A nurse who worked with the first HIV patient in Pittsburgh said that “No one knew what was going on at the time.  We all wore bio hazard suits and the room was under strict quarantine.  The patient died within a few weeks after being treated with experimental drugs in an effort to control a disease that no one knew what the cause was. We were all terrified and had no clue if we were going to catch it ourselves.”   

At the time of its advent back in the early 1980’s, HIV was perceived to be a lethal disease and was most prevalent among gay men and IV drug abusers; in fact the first name given to HIV was GRID, or Gay Related Immunodeficiency Disease. A study done by Herek et al in 1988 claims that, at that time, the HIV population was comprised of 63% homosexual men and 19% IV drug users, and was also more highly concentrated in the black and Hispanic populations.   It was considered to be a gay disease, so much so that the press referred to it as the “gay plague” and little attention was paid to the subject until 1983, when it was discovered to have occurred outside the gay population. For example, prior to 1983, the NY Times only printed six stories about HIV, none of which were front page news.  In contrast the Times printed 54 stories about the Tylenol scare that happened that year and four of them were front page articles.  Seven people died from the Tylenol incident, in comparison to 260 people dying from HIV that same year (Herek et al, 1988). 

At that time, the American population considered HIV to be something that was not a direct threat to the general populous and that which only affected the fringes of society and minority groups.  A poll taken by the L.A. Times that asked Americans if they thought that HIV was a punishment from God, demonstrated this perception.  Twenty eight percent of those surveyed agreed that HIV was “God’s punishment for homosexuals and the way that they live.” (Herek et al)

According to the Herek study, there was a very large stigma attached to HIV for a number of reasons.  HIV infection in fact carried a dual stigma, because it was considered to be a lethal disease and also because it was most prevalent among groups that were already stigmatized. HIV was, and is, a progressive disease and it is transmittable by sexual contact, therefore people with HIV were seen as putting people at risk. People were blamed for having the disease because of perceived risky sexual behavior and drug abuse. During the time of the study, over half of Americans believed that “people who have HIV only have themselves to blame.”  According to Herek et al, “The stigma attached to HIV is a stigma that is layered upon a pre-existing stigma placed on gay men and drug users. Reactions to HIV are reactions to gay men, drug users, minorities, and outsiders in general.”

A second explanation to the stigma is that HIV’s fatality confronted people with their own immortality.  Being able to link HIV to already marginalized groups like homosexuals and drug abusers allowed people to associate it with something that doesn’t affect them since they don’t belong to those groups. Shultz refers to this as “fundamental anxiety’, and says that the pragmatic objective to everyday life is to avoid provoking this anxiety by constructing experiences to avoid this.  HIV represents such a construct. (Shultz, A., 1962.) 

The Herek study also suggests that marking of individuals can increase a community’s solidarity by demarcating its boundaries. “If a diagnosis of HIV uncovers a man’s sexuality, he goes from being discredible to discredited.” (Herek et al, 1988)  Terms like “risk groups”, “general public”, and “innocent victims” demonstrate  in-group and out-of- group people. A contemporaneous example would be Newsweek’s description of hemophiliacs and infants with HIV as “blameless victims.” Once could suppose that a “blamed victim” belonged to one of the stigmatized groups. The Catholic Church also used HIV as a way to promote hatred toward stigmatized groups by stating that, “Homosexuals were putting everyone at risk because of their behavior.” 

Interestingly, a second study  by Herek was done a decade later to assess if and how public reaction had changed about the HIV epidemic. In 1993, 653 white households and 1,343 black households were sampled by telephone interviews. The study measured HIV stigma in five ways; negative feelings toward people with HIV, support for coercive HIV related public policies, blame for persons with HIV, intentions to avoid persons with HIV, and intentions about transmission. The results from the 1993 study showed that blacks were much more biased toward the negative and also much less informed about routes of transmission. In the general population, subjects still felt that HIV was very much a gay disease and had a lot of misconceptions about routs of transmission.  A large percentage of subjects felt that people with HIV should be avoided or segregated to protect the general public and agreed that they would avoid certain people with HIV such as a coworker or a school teacher.  (See tables 1 and 2). 

HIV still carried a great stigma in the 90’s but the stigma is fading in the new millennium because of several factors. HIV is now recognized as not being just a “gay disease”. A large percentage of African heterosexual men are HIV positive today and this has been made known through the media which has helped to shift the focus off from the gay population.  Public figures like Magic Johnson came forward and admitted that they were HIV positive which made people realize that HIV does, in fact, affect normal everyday people.  The internet increased exposure to education about HIV and we have had three decades of teaching prevention methods and the advocation of safe sex.  The world is much better informed about HIV and much research has been done concerning how the virus works and its transmission. There is no longer such a widespread panic and uncertainty about the disease and less people feel that HIV patients should be segregated from society. Another factor that has reduced stigmatization of homosexual groups is greater acceptance and the mainstreaming of the homosexual community through civil rights groups and better media portrayal.

In order to get a general sense of current public opinion about HIV, I created an online survey and examined current ideas and attitudes about HIV.

Method:

The study consisted of a random sample of 33 people from across the U.S.   The survey was posted on various public social networks and was limited to taking the survey once by blocking repeat I.P. addresses. The median age range was 40 with 41.8 percent of the sample self- identifying as heterosexual, 41.8 percent self- identifying as heterosexual, and 17.65 as bisexual (See table 4).  Gender was identified and 93.94 percent of those surveyed were male and 6.06 perecent were female.

Results:

Misconceptions still exist about the route of transmission for HIV, although the majority of those surveyed were well informed about false notions of transmission.  The most common misconception was that sharing a drinking glass could cause a person to catch HIV. There is a major difference shown between the 2011 results and those of the survey done in the mid 1990’s.  In the Herek survey done in 1993, there was a large percentage of those sampled that had misconceptions about transmission (see table 2). 

In general, most people surveyed in the 2011 study were sympathetic toward people with HIV and did not agree that they should be separated from society.  Only 3 percent said that they would feel disgust toward a person who was HIV positive.  None of the subjects said that they would feel afraid. The majority of subjects agreed that HIV is not primarily a gay disease.  Only six percent of those sampled stated that they thought that HIV was a homosexual disease and seventy two percent agreed that two heterosexual people having unsafe sex were at risk of catching HIV (Table 3).

There seems to be a general notion that HIV is no longer the death sentence that it used to be because there are now drugs to control it.  Eighty seven percent agreed that HIV was not as dangerous as it once was. Although people agreed that it was not as dangerous, one hundred percent of those asked if it was ok to not use a condom said no.

In conclusion, the opinions surrounding HIV have made a considerable change over the last three decades.  HIV has gone from being perceived as a gay and drug abuser disease to a disease that can potentially affect everyone.  Less fear and paranoia surround it because of better knowledge about the disease stemming from research.  More accurate information is known about the means of transmission and people are better informed. HIV is no longer the mysterious gay illness that it once was.

 

 

 

 

References

Herek, Gregory & Glunt, Erik (1988). An Epidemic of Stigma, Public Reaction to AIDS. American Psychologist, Vol. 43, No. 11, 886-891.

Herek, Gregory & Capitanio, John (1993). Public Reactions to AIDS in the United States: A Second Decade of Stigma. American Journal of Public Health, Vol. 83, No.4, 574-577.

Shutz, A. (1962). The problems of Social Reality, Collected Papers, Vol. 1, 207-259.

Table 1:  Results from 90’s Study

Item	Stigmatizing Response	Non-stigmatizing Response
Feelings toward persons with AIDS
Angry	27.10%	72.10%
Disgusted	27.70%	71.60%
Afraid	35.70%	63.60%
Coercive Attitudes
“People with AIDS should be separated legally to protect public”	35.70%	63.60%
“Names of people with HIV should be made public so that others can avoid them. “	30.20%	68.90%
Blame
“People who got AIDS through drug use or sex got what they deserved.”	20.50%	79.10%
Avoidant Behavioral Intentions
Close friend with HIV?	12.50%	83.80%
If you had a young child and knew that another student had HIV?	15.80%	81.30%
Coworker with HIV?	20.40%	77.90%
Owner of grocery store?	47.10%	51.30%

 

Table 2: Beliefs About Transmission – General Population Results
Transmission Beliefs	Infection Likely	Not likely
Kissing person with HIV on cheek	18.50%	80.50%
Sharing a drinking glass	47.80%	51.70%
Using a public toilet	34.30%	65.20%
Being coughed on or sneezed on	45.40%	53.90%
Bug bites	50.10%	48.00%
Two healthy gay men not using condoms	46.20%	46.60%
Two health gay men using condoms	19.50%	77.30%
IV drug user not sharing needles	15.10%	83.90%

Table 3:  2011 Online Survey Results
Item	Agree %	Disagree%
Stigma Items
HIV is primarily a homosexual disease.	6.06	93.94
I feel that people who caught HIV through sex or IV drug abuse deserve to be sick:	0	100
People with HIV should be kept separate from the rest of society:	0	100
If a close friend caught HIV, I would avoid them:	0	100
I feel that people who caught HIV through sex or IV drug abuse deserve to be sick:	0	100
Only morally loose or corrupt people contract HIV:	0	100
HIV is a punishment by God for homosexuals and drug users:	0	100
When I meet someone who I know is HIV positive,  I feel:
Sorry				4				12.12%
Angry				0				0.00%
Disgusted				1				3.03%
Concerned				6				18.18%
Afraid				0				0.00%
Sympathetic				16				48.48%
None of the above				6				18.18%
Beliefs About Transmission and Severity of Disease
I could catch HIV from drinking from the same glass as someone who is HIV positive:	25.81	74.19
I  can catch HIV if someone who has it sneezes on me:	9.09	90.91
HIV is controllable with medications so it’s more of an inconvenience than life threatening:	12.12	87.88
If a heterosexual couple has sex without a condom, it is not likely that they will contract HIV:	27.27	72.73
I could catch HIV from a bug bite:	18.18	81.82

Table 4:  Age Range of 2011 Study

My age range is:

under 20   4   12.12%   21 to 30   7   21.21%   31 to 40   4   12.12%   41 to 50   8   24.24%   51 to 60   6   18.18%   61 to 70   3   9.09%   over 70   1   3.03%