Michael Ferrigno
Professor Oppenheimer
Seminar 3: Urban Epidemics
10 December 2012
Media Perspectives of HIV: Testing, Treatment, and Rights of AIDS Patients
The media plays a major role in bringing information to the masses. This makes the media powerful, since they can bring this information from various perspectives and persuade the masses on how to think and feel about a subject, consciously or subconsciously. In the 1980s, before the Internet and computers were a main source of information, written media and television were the preferred sources for news. Accordingly, the epidemic of HIV/AIDS cases began to catch light in the early 1980s. The disease was immediately stigmatized due to its prevalence in the gay community, fear from little understanding and knowledge of the disease, as well as presence in the sex trade. The media presented the disease as an immoral disease due to its connection to immoral behaviors such as drug use, prostitution, and homosexuality. This ultimately led to a misunderstanding of the infectious disease and societies prejudice against those who had the disease.
Newspapers such as the New York Times and Wall Street Journal, are some examples of news sources that first brought HIV/AIDS to society’s attention. HIV/AIDS is still a major disease present day. More current reports on HIV/AIDS offer a different perspective of the disease, one that does not involve the stigma of the disease but instead focuses on the human rights aspects of the disease, clinical, and pharmacological news on advances in testing and treatment of HIV/AIDS. If the perspective of the disease has changed over time in the media, this can be reflected by a change of perspective by society. Through analyzing articles from these papers, from the 1980s to the present, a shift in understanding of the disease can be seen, from the primal confusion and stigma of the complicated disease, to the more present understanding, treatment, and work towards a cure. This growth of understanding of HIV/AIDS in society is represented through society reaching effective solutions for treatment, care, and human rights of people living with HIV/AIDS.
Little was known about AIDS when it first exploded and came to light in the first years of the 1980s. A New York Times article from 1988 called “Study Backs Theory That AIDS Festered in Africa” discusses the origin of the disease. The article begins, “urbanization and war have played major roles in the continent’s (Africa’s) recent AIDS explosion” (NY Times). The study is based on the fact that in remote villages, the instances of AIDS infection has remained the same over a decade, while throughout the continent AIDS is spreading. The article later states reasons as to why urbanization and war is to blame, saying “the study suggests that recent social upheavals and migration helped spread AIDS by contributing to a breakdown of traditional tribal values and increased sexual promiscuity, especially in cities” (NY Times). According to the article, “the AIDS virus spreads through sexual intercourse and exchanges of blood, as on contaminated hypodermic needles and from mothers to newborns” (NY Times). This article does a masterful job at relaying the facts about the disease, the patterns it is spreading in, and the reasons behind why it is spreading, however it is also a heavily biased article.
The title of the article describes the spreading of the disease as “festering.” Usually when one thinks of festering they think about a cut that has become infected, or food that has spoiled and is giving off smelly odors. The title uses fester to describe the transmission of the AIDS disease across African cities, and is blaming the increased immoral behaviors, such as “sexual promiscuity,” for the increased transmissions in these densely populated cities. The author is essentially saying that the disease is not festering, but the people are, due to the “social upheavals” and “breakdown of traditional tribal values” (NY Times). This is a primitive form of disease theory, where an immoral lifestyle is blamed as the cause of disease. However, with AIDS this theory holds some truth. For example someone who leads this immoral lifestyle, whether by being sexually promiscuous or an injection drug user, will be at more risk and have a higher probability of being exposed to the disease. This is where the stigma and confusion of AIDS is primarily based.
Another article, “HTLV-1 Virus Found in the Blood of Prostitutes” by Michael Waldholz, from 1990, discusses the prevalence of the HTLV-1 virus in prostitutes and injection drug users. Waldholz states “researchers have found evidence of a cancer-causing virus closely related to the AIDS virus in the blood of more inner-city prostitutes than they had expected” (Waldholz). The survey was conducted from 1986-1988 and tested approximately 1300 prostitutes from eight different cities, finding 6.7% to be infected (Waldholz). This disease is only related to AIDS because of the fact that it belongs to the category of retroviruses. By saying the two diseases are related however, the author is making a correlation between prostitutes and AIDS. This shows that at the time a socially unacceptable career, prostitution, was being linked to these deadly and feared diseases. The link to immoral behavior is strengthened when Waldholz continues to say, “A previous study had shown that the two viruses were unexpectedly prevalent among intravenous drug abusers in New Orleans” (Waldholz). The connection between drug users and prostitutes is shown through the fact that “the new study suggests that the virus is being transmitted to the prostitutes via sex with drug users” (Waldholz). The article fails to realize the possible overlap of prostitutes who may also be injection drug users, which could also explain why the virus is being transmitted to prostitutes.
As we can see from the two articles discussed so far, by 1990, when the Waldholz article was published, the stigma of AIDS had already been established. Its link to the most derogatory social behaviors was clear. This caused a misunderstanding of the disease and led others to believe that the disease itself was punishment for immoral behaviors. Essentially this means that a person infected with the disease was stigmatized as an immoral person, which is why he or she contracted the disease to begin with. This isn’t true however, due to the fact that transmission could occur beyond immoral acts. For example, “1,200 British hemophiliacs who have been infected with HIV, the AIDS virus, from contaminated blood” (Lohr). This statement shows that blood transfusions could spread the disease through transfusing blood that was contaminated with the virus. This was pivotal because it was one of the first instances where the disease was spread via a medical procedure, and showed that this disease was capable to be transmitted to anyone.
The fact that the disease could be spread through medical procedures caused the disease to be more feared. Instead of bringing light to the fact that this disease wasn’t punishment for immoral behaviors, the author is increasing public fear. Lohr adds to this fear by explaining that “the British Health Department issued its statement of government policy saying that AIDS-infected doctors can continue working in most cases and that their patients do not have to be told” and that “In the United States, the Federal Government similarly recommends that health care workers who are infected with the AIDS virus should be allowed to continue working except in special circumstances” (Lohr). Doctors can be infected with the disease, but do not have to disclose their status with their patients. Doctors are viewed in society as one of the highest praised professions, helping cure others of their ailments, and being very highly educated. A dilemma is presented where this disease has reached the upper classes of society. Once again instead of focusing on what this means to the disease and its connection to immorality, the author states why doctors being infected is not a problem, because “of the minimal risk AIDS-infected doctors present to patients” (Lohr). This focuses once again on immoral behaviors as the problem, due to the fact that they represent the highest risks of being exposed and transmitting the disease to others.
Six years after the Lohr article was published, in 1993, another article was published essentially backing up this idea. Published in the Wall Street Journal, “Rethinking AIDs” by Robert Root-Bernstein discusses a recent National Research Council report on AIDS. This report states that “that HIV infection and AIDS will remain limited to specific geographic areas and risk groups identified at the beginning of the epidemic: gay men and more particularly an ever-growing population of urban, drug-addicted, poverty-ridden, malnourished, hopeless and medically deprived people” (Root-Bernstein). This is trying to decrease public fear, but at the same time it further increases the idea that the disease is based from immoral and unaccepted behaviors. The article then claims that “Immunologically healthy individuals seem to be immune” to AIDS, backing up its claims using evidence from the hemophiliacs who were infected. The fact that only about 10% of hemophiliacs developed AIDS after 10 years of being infected with HIV was compared to “the average time from infection to overt AIDS (based on studies of gay men and intravenous drug abusers) is 10 years” (Root-Bernstein).
Further validating his argument, Root-Bernstein states, “If HIV alone controlled AIDS, then about half of the people infected with HIV in 1983 should have developed AIDS by now, regardless of their mode of exposure” (Root-Bernstein). Root-Bernstein is, at the time, making the logical argument that “the people who do get both HIV and AIDS have many additional immunosuppressive factors at work on them that predispose them to disease” (Root-Bernstein). This may have been considered a breakthrough at the time and even though it is based on facts and statistics, it is still biased. Root-Bernstein is taking the limited information of risk groups and susceptibility to AIDS to make broader claims. His argument is weakened because it focuses on limited data, and his claims that only people with additional immunosuppressive factors can get the disease is evidence of this. Bernstein fails to discuss the fact that the hemophiliacs who were infected with HIV could have had better healthcare options and quicker medical action than gay men and impoverished drug users, who may not have afforded the same medical attention due to the cost of the health care and stigma of the disease.
People with additional immunosuppressive factors may be at high risk, but that does not directly mean that lower risk people can’t contract the disease, especially when the data available does not focus on various large groups of low risk individuals. Root-Bernstein concludes that “Controlling the factors that make one susceptible to HIV and AIDS may therefore turn out to be easier and more effective than targeting HIV itself,” essentially calling for control over the immoral and socially derelict behaviors that cause higher susceptibility, such as homosexuality and drug use. Root-Bernstein chooses control over immoral behaviors as the mode for controlling the epidemic, instead of promoting efforts in medicine, treatment, and public education of the disease to spread awareness. Root-Bernstein’s article is a clear example of the thought processes that prolonged the disease’s stigma in society, and prevented advancements in treatment and understanding of the disease.
Closely related to stigma is fear. In a way, fear of HIV and AIDS has driven and fueled the stigma of the disease. Most of the fear is based on the fact that little was known about the disease in its early years. This fear was publicized in a 1987 New York Times article titled “ AIDS OVERTAKES HEART DISEASE AS NO. 2 WORRY.” According to the article, “Blood bank officials reported yesterday that AIDS had replaced heart disease in the public mind as the second most serious health problem in the country, ranking behind cancer” (Sullivan). The public fear of AIDs was still growing at this time, and the author Sullivan continues to explain that “there was still a great deal of public confusion and ”irrational fear” over contracting the deadly AIDS virus from blood transfusions” (Sullivan). The fact that screening tests have eliminated HIV/AIDs from blood banks across the nation by 1987 was, for the majority, unknown by the participants in the survey, and not as publicly advertised as the infection cases that stemmed from transfusions. The act of donating blood was also stigmatized and feared, as the survey reported that “27 percent of those polled believed it was likely that a person could get AIDS that way (donating blood), even though there was no risk whatsoever from donating blood” (Sullivan).
We see a trend occurring by 1990, and that is the belief that AIDs growth is slowing, and may even peak and decrease. Two articles by Marilyn Chase in the Wall Street Journal discuss these ideas, and the factors surrounding the trailing rates. First the article, “AIDS’ Growth Appears to Trail Expected Rates,” discusses the initial shock that the number of new cases of AIDS were trailing the Center for Disease Control’s projections. According to Chase, “Growth of the AIDS epidemic in the U.S. appears to be falling below anticipated rates, for reasons scientists will no doubt be debating for months” (Chase). The reasons as to why the decrease was occurring were unknown and still being debated in the Public Health Community.
Chase later elaborates on some of the possible theories of why AIDS cases were decreasing. One theory is a “behavioral change in homosexual men” such as “reducing their numbers of sexual partners, using condoms, and avoiding anonymous bathhouse contacts and other high-risk encounters” (Chase). Another being “herd immunity,” where the most vulnerable individuals are affected the fastest, while more immune individuals take longer to be affected. Chase even mentions the possibility of recent drug therapies such as “AZT,” which “delay the onset of disease symptoms” (Chase). The trailing rates are only limited to developed countries, and rates were constant in Africa and underdeveloped nations, where the new drugs were scarce. Chase’s assertion of the change in behavior of homosexual men is consistent with the disease’s stigma. The change in behavior represents the homosexual men acting more morally; therefore less AIDS cases were reported. This direct correlation between socially unacceptable behaviors and AIDS infection is still present in 1990. Instead of defining why the homosexual behaviors make homosexuals at higher risk, the article just states the direct correlation between the two, leaving the public still confused about the disease, and further highlighting the stigma.
In her next article, “Two Scientists Say AIDS Has Peaked, but Others Sharply Dispute the Theory,” Chase discusses the opposing side of the argument. According to a Dr. George Lemp, from the San Francisco Department of Public Health, “Any method that doesn’t look at the distribution of disease has limited usefulness and questionable accuracy” (Chase). Dr. Lemp is opposed to the statistical model used in the prediction that AIDs growth is slowing, because AIDS is a unique disease with many more factors at play than the statistical model used can process. Chase further backs up this argument by stating, “It (HIV/AIDS) has a long and variable incubation period, which Dr. Lemp estimates averages 11 years, that clouds and complicates any prediction of future caseload” (Chase). This essentially means the long latent period of HIV infection to AIDS disease could be another reason as to why AIDS growth seems to be slowing. Also a possible lack of testing could have contributed to the dip below projections. The most important thing we see in this article is the split amongst public health professionals, and the fear that the theory of AIDS peaking “could threaten funding commitments” (Chase).
From the Chase articles we see a change in the focus of AIDS in the media. The stigma is still present, however the inner workings of the Public Health Community are being brought to light. We start to see the theories and stances of Public Health professionals, which could possibly help to educate society about the disease, and bring an understanding to why this disease is so difficult to interpret. The complexities of the disease are also being displayed, and available treatments are being repeatedly discussed, such as the AZT treatment, which slows progression of HIV to AIDS. The Chase articles are still burdened by the stigma present at that time, but manage mostly to offer insight into the efforts being made in the fight against AIDS.
One of the first instances of the discussion of treatments being tested in the media was in a Wall Street Journal article from 1984 titled, “Collaborative Research To Supply Interlukin-2.” The article summarizes a government contract of $550,000, through which Collaborative Research, Inc. will supply the government with Interlukin-2 for three months for testing and research. The article later goes on to explain the use for Interlukin-2, as “a possible cure for acquired immune deficiency syndrome” (Collaborative). Interlukin-2 was thought to hold the key to a cure due to its natural presence in our bodies as an immune system regulator, and its ability to “restore the function of T-cells, an important part of the immune system” (Collaborative). This article is six years older than the Chase articles, and discusses a possible treatment without ever mentioning any stigma about the disease. The article’s focus is on the search for an effective form of therapy, and brings attention to the economics behind the research, by putting government contracts and monetary costs of the research in perspective. This article is an ideal example of how articles should be tailored on HIV and AIDS to raise public awareness and public knowledge about the disease, as well as to promote the efforts for finding a cure. However, throughout the 1980s, as we have seen, the majority of articles discussing HIV and AIDS were biased by the stigma of the disease and failed to positively promote advancements in testing and treatment of HIV/AIDS.
The disconnect between the straightforward scientific articles in the early 1980s and the more biased articles in the late 1980s and early 1990s, was most likely due to the fact that the science behind the disease did not make for good news material. The “Interlukin-2” article is a great example of how non-biased articles should be structured, however it doesn’t attract any attention beyond the scientific world. Its description of the uses of Interlukin-2 tries to simplify the science behind HIV and AIDS treatments for the average reader, but from a literary standpoint is still bland and boring. People were more interested in the factors behind the spread of disease, which means that the stigmas were more interesting and appealing to readers than the science. As the stigma grew to fear however, the masses wanted to learn more about the science of the disease, and what was being done to prevent the disease. This is where we see shift around the mid 1990s for news material that is more focused on treatments and prevention of transmission.
Following the shift back to scientific findings being reported more is a 1993 article from the Wall Street Journal titled, “AIDs researchers discover ‘door’ HIV uses to enter cells” by Jean Paul Levy. This article discusses the findings by French researchers at the Pasteur Institute, where they discovered the specific molecule that allows HIV virus to enter into the host’s cells. Levy states, “a molecule, named CD26, (is) used by all strains to penetrate its human hosts” (Levy). The article continues to elaborate, “long have (we) known that the virus latches onto a receptor molecule called CD4 on the surface of some blood cells. But we didn’t know how the virus got inside the cell to contaminate it” (Levy). Levy explains the implications of these findings using a lock and key as metaphors for the process saying, “We hope to be able to develop drugs capable of jamming the CD26 lock so that the AIDS key will no longer fit” (Levy). A possible drug for this would end the epidemic and stop HIV progressing to AIDS completely among those vaccinated.
The Levy article gives us a snapshot of the status of the scientific community at the time. Every little discovery they made about the disease was crucial in understanding how the disease works, and this knowledge could be used in efforts to create vaccines and drug treatments for the disease. The article also never once mentions a stigma or bias of the disease. The article is knowledgeable, factual, and delivers this information in a way that makes it understandable. The key to this article is its ending. The article ends with an upbeat and hopeful image presented, where a “universal vaccine” may possibly be developed from the information discovered (Levy). The hopeful attitude of the article is most important because it is employed to dissipate the fear and stigma still surrounding the disease, while promoting a brighter future for treatment of the disease.
Around the beginning of the 1990s, we also see a push for “human rights” for HIV/AIDS patients. Due to the fear, stigma, and lack of knowledge of the disease in society, many people who were infected were mistreated and misunderstood by society. A Wall Street Journal article from 1990, titled “Life in the Face of Death,” reviews the morning news segment of Paul Wynne, a journalist who has AIDS. The news segments were called “Paul Wynne’s Journal,” and dealt with his life now that he is living with AIDS. Wynne’s segment revolves around the truths behind living with AIDS, and according to Wynne, he wants the segment to “encourage those at risk to be tested, to push for the development of new medicines, and above all, to enlighten most of us, the vast non-HIV-positive segment of America” (Goldberg). It would be hard to tell the actual impact of Wynne’s local news segment in these areas, but in theory Wynne is a prophet for AIDS patients. Wynne has come to complete terms with his disease, and is insisting on using his intelligence, experience, and journalistic influence to abate the falsehoods surrounding AIDS, and educate society about what it is truly like to live with the disease.
Wynne’s impact, although incalculable, is very important. Wynne’s position is interesting because of his documented work as a reporter before he developed AIDS, a physical transition can be seen from a tan and healthy looking young man to a pale, thin, ill man. Wynne points out these facts to show the symptoms and progression of AIDS. Wynne’s greatest contributions are his work towards human rights for people who have AIDS. Wynne tells the story of two homosexual friends of his, who were clearly discriminated against by dinner hosts who thought they may have AIDS, and how the two men did not stoop to the level of ignorance of their hosts, but accepted this discrimination with dignity by toasting “to our good health” (Goldberg). Wynne even comments on current issues with AIDS, such as “a recent California poll in which 87% said they would be afraid to work side by side with someone who had AIDS” in which he calls those 87% “Dummies” (Goldberg). Wynne is an ideal example of an AIDS infected person in the workforce, and continues to work in order to diminish the social stigmas towards a future where AIDS patients are understood and treated like humans who are suffering and need help, instead of being feared like the disease itself.
In the New York Times article “Contagion and the Constitution,” Katie Leishman reviews Ronald Bayer’s book “Private Acts, Social Consequences.” The book, according to Leishman, discusses “the manner in which officials have weighed the perceived dangers of AIDs against the individual’s constitutional rights” (Leishman). Leishman’s biggest criticism of Bayer is his assumption that HIV infection directly causes AIDS disease, something we know to be true in the present. An interesting concept is also mentioned, which is “the calculus of public health” (Leishman). What this essentially means is the math that public health officials use to determine the dangers of diseases and enact policies to control the spread of diseases, such as AIDS, for example through the “closure of homosexual bathhouses” (Leishman). Bayer describes these acts as not only significant in decreasing transmissions, but have “symbolic significance…as a powerful statement about the dangers of promiscuity” (Leishman).
Bayer compares the AIDS epidemic to the Typhoid outbreak and the Black Death. Bayer backs up his comparison by saying that “any contemplated encroachment on civil liberties in the name of public health today is contingent upon the virulence of the disease agent” (Leishman). According to Bayer, AIDS is as virulent and dangerous to our society as Typhoid Fever and the Black Death, a plague that killed off about a third of the entire population of Europe during the 14th century. The fear of AIDS is evident through this comparison, however Bayer is using it to make a point. During the Typhoid Fever outbreak, we are given the famous story of Typhoid Mary who was stripped of her civil liberties and imprisoned on an island so she could not spread Typhoid Fever through contaminating the food she cooked. Essentially those were public health measures to stop the spread of Typhoid Fever, and Bayer was expecting similar civil liberties to be stripped in order to control the AIDS epidemic.
We see similar trends in academic journals, where AIDS is being de-stigmatized, and a greater understanding of the disease is being pushed forward. Academic journals naturally publish more scientific and fact based writings, making them less biased than news articles, while also showcasing the scientific aspects behind the disease itself. These articles may be harder for the average American to understand and interpret, however they do posses much more knowledgeable material. The article, “Sexual and Reproductive Health Services and HIV Testing: Perspectives and Experiences of Women and Men Living with HIV and AIDS,” published by Reproductive Health Matters, discusses the experiences of HIV/AIDS patients, and the challenges they face when dealing with treatment, care, and human rights. The focus of human rights in this article is in sexual and reproductive rights of people living with HIV/AIDS. According to the article, “Sometimes, HIV positive people are afraid to have sex because they do not fully understand how to prevent HIV transmission” (Bell). This stresses the importance of educating HIV infected people about their rights, and teaching them how to engage normally in society, which includes sexuality, through preventative measures.
When looking at more recent news articles, HIV testing is being promoted as a tool for prevention. In a 2005 Wall Street Journal article, “Experts Advise Routine Testing,” discusses the push in public health for routine testing of all Americans. One of the major challenges of this has been the division of public health on this topic, due to the fact that routine testing is very expensive, and can’t be proven to be effective. Some public health officials instead think testing is the best form of prevention stating, “(studies) estimated that routine one-time testing of everyone would cut new infections each year by about 20%, and that every HIV-infected patient identified would gain an average of 1.52 years of life” (Experts). If these estimates were true, they would mean a breakthrough in the battle against transmission of HIV, as well as in treatment of infected people through starting drug treatment early. The only difficulty being that routine testing is entirely voluntary, based upon the patients’ will to be tested every year. The article is using its influence over the masses to educate the masses about routine testing and promote its possible benefits to our society as a whole, and in essence is trying to make more people routinely test themselves each year.
From recent news articles discussing HIV/AIDS, we see this penchant for testing as a preventative measure growing. Donald McNeil Jr. focuses on new testing methods in several 2012 New York Times articles. First in “FDA Approves Rapid H.I.V. Test For Use At Home,” McNeil discusses the implications and importance of a rapid, at home HIV test. This test eliminates the stigma of going to a doctor or clinic to be tested, because it allows someone to test themselves in the privacy of their own homes. The only drawback is the possibility for inaccurate results, which means that follow up appointments must be made to ensure the test results were correct. In another article, “Testing for H.I.V. at Stores, on Street Corners and at the Motor Vehicle Office,” McNeil discusses the efforts that are starting to be taken in cities such as Washington, where there is an “estimated 5,000 Washingtonians who are infected but do not know it” (McNeil). McNeil continues to state, “Despite decades of alarm over the AIDS epidemic and many advances in treatment, testing is so inadequate in the United States that about 240,000 Americans do not know they are infected” (McNeil). McNeil is promoting the efforts of Washington in order to fight against the transmission of HIV, but hinting at the possibility that these efforts were late, being held back by the stigma of testing.
McNeil continues his reporting on AIDS in his article, “H.I.V. Stigma of Disease Is a Barrier To Medical Care for Pregnant Women.” Based on a recent study he states, “Fear of being stigmatized as an AIDS patient is still a major barrier to good medical care for pregnant young women in many countries” (McNeil). These issues reflect the problems with care for HIV/AIDS patients in the United States in the past. However underdeveloped nations are still experiencing the nasty and detrimental effects of the stigma of HIV. The base of the stigma for these women lies in fear and shame, where “many fear being kicked out by their husbands if they are found to be infected. One woman said her neighbors would assume she was a prostitute” (McNeil). This is alarming due to the fact that this is still occurring in modern times, however these underdeveloped nations do not have the funding to properly treat and care for people with HIV/AIDS, let alone educate the masses about the truths of the disease.
Over the course of three decades, from the beginning of the HIV/AIDS epidemic, there has been a huge battle waged against the disease. The battle against HIV/AIDS is still being fought today. The stigma of the disease, which was present in its inception, sadly remains in many societies. In the United States, through news coverage of the disease, we see a shift from the stigma and lack of understanding, to a push for advancements in testing, treatment, and human rights for people who have HIV/AIDS. Although some stigma may still be present in the U.S., it has greatly decreased as knowledge about the disease has increased significantly, as well as education and awareness about the disease. In underdeveloped nations this doesn’t seem to be the case, however we can assume that eventually the stigma will likely decrease, as these nations grow and use their funding for education about the disease. From recent academic journals in America, a new trend is presented, one that promotes the human sexual and reproductive rights of people infected with HIV/AIDS. This will predictably be the next barrier in the United State’s fight against AIDS, and will be signified through increased media coverage of sexual and reproductive rights of HIV/AIDS patients.
Works Cited
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