HIV/AIDs has been, for the past three decades, one of the most recent epidemics and quite possibly the most feared contagious disease. AIDs is unique compared to other contagious diseases that were a great challenge to bring to an end, such as cholera, due to its infection patterns and delayed symptoms. HIV infection and transition into AIDs is unique, because the disease attacks the immune systems of the host, allowing other opportunistic infections to easily attack and kill the host. What has made HIV/AIDs so feared in society is its base in unaccepted social behaviors, and the stigma that is associated with these behaviors. These behaviors include homosexuality, injection drug usage, and the sex trade (prostitution). These groups were initially first groups to be affected by AIDs, which allowed the stigma of AIDs to grow. However as time went on, the disease also affected heterosexual people as well. It became public knowledge that this was a contagious disease, and one that did not discriminate amongst social groups. This fostered fear of the disease, and logically fear and stigma unknowingly work against any positive measures in testing, treatment, and rights of people living with AIDs.
From the article “Routine HIV Screening — What Counts in Evidence-Based Policy?” in the New England Journal of Medicine, by Ronald Bayer and Gerald Oppenheimer, we are given a glimpse of the Public Health community as well as the distinct division within it. The CDC continues to argue for routine testing, especially after the passage of the “Affordable Care Act” in 2010, as a necessary preventative measure. The U.S. Preventative Services Task Force, besides having a long and annoying bureaucratic name, has since 2005 determined that the evidence present did not justify routine testing as a preventative measure. We are exposed to the age old public health dilemma of doing what is scientifically exact, or doing what is necessary to fight the epidemic and save populations from harm. Since 2011, the USPSTF has been called to reconsider its 2005 determinations, to allow routine HIV screening to be considered a preventative measure, and therefore covered by the ACA.
Many in this class have experienced the AIDs epidemic’s later effects, which manage to be less surrounded by stigma and more involved in preventative measures and the search for a vaccine. In the year “1992, AIDs had become the leading cause of death of men between the ages 25 and 44” (Bayer, Oppenheimer). Most of us in the class were born in 1993, and it’s interesting to see how our perspectives of the disease differ from those who were alive when the disease first appeared in the 1980s. When I asked my father about his perceptions of the disease when it first came to light he responded “I wasn’t really worried, it was said to only affect gay men so I didn’t really think much of it.” Now we aren’t as much worried, however we understand that the disease is completely capable of being transmitted to anyone* and that we must act responsibly and using preventative measures to ensure we do not get or transmit the disease. As of the CDC report of leading causes of death in males, all ages, all races, “HIV disease” does not even rank in the top 10. This says a lot about the advances in treatment and how profoundly effective it has been. As Bayer states in “Public Health Policy and the AIDs Epidemic,” “the broad political context within which decisions will be made about the availability of resources for prevention, research, and the provision of care, will be affected by the changing perspective on AIDs.” This statement alone justifies that the decrease in stigma and fear, coupled with increase in education of the disease (changing perspectives), has resulted in the advancements in treatment, and continues the government funding for research for a cure. As preventative measures go, the ACA encompassed most, but as long as routine testing is fundamentally left out of the preventative measures group, routine testing will not be a significant preventative measure due to its patient cost and the amount of time it may take to show positive results.
From the Anastos article, “Women and AIDs,” we are presented with images and descriptions of the stigma that lies in AIDs. Anastos discusses the treatment of women infected with AIDs, and the how the AIDs stigma is reinforced by sexist and racist stigmas. Luckily as a society we have been moving constantly moving away from that stigma, to now promoting human and sexual rights of people with HIV/AIDs. People infected do have rights, we cannot just quarantine them or treat them like Typhoid Mary. We must treat them like humans, not criminals or agents of transmission. In part the increase and protection of rights for people living with HIV/AIDs may be due to the successes of the Gay Rights Movements, and legalization of gay marriage in several states including New York. Also, the fact that treatment decreases transmissions is key, because those who are undergoing treatment will also be following preventative measures against transmission. This brings us back to the routine testing argument. Imagine if everyone who was infected with HIV/AIDs knew that they were infected, and could use that information to prevent themselves from transmitting the disease. The disease would become almost nonexistent in any perfect scenario. Since we do not live in a perfect world, we can only attempt to use the same idea to decrease the amount of transmissions by about 20%. This is why routine testing of all adults in the U.S. is so important, and the difference between the cost of testing and the expected benefits in decreased transmissions is why it is still being argued.
This week’s readings focused on giving a comprehensive view of the effect of AIDS on society as a whole. As Michael pointed out in his blog post, AIDS was a feared disease because it only seemed to affect homosexual men, intravenous drug users, and prostitutes. This supposed “discrimination” created a stigma against individuals who were afflicted with the disease. This can be related to the whole outbreak of Polio because people believed that Italian immigrants of low socioeconomic status were the vectors of transmission of the disease. In the case of the AIDS epidemic, people quickly realized that AIDS affected heterosexual people as well and this caused certain advances in treatment of the disease.
The article, “Routine HIV Screening- What Counts in Evidence-Based Policy?”, discusses routine testing, and sides that oppose/favor it. After completing my paper for this class, it is my opinion that routine testing can be used as a preventative method but it is not nearly effective as is mandatory screening. Routine testing has limits in that it only tests people if they so wish to be tested. If organizations like the U.S. Preventative Service Task Forces continue to fight against screening, then the progression to curbing the spread of AIDS will be impeded. Routine screening is only a small step in a long journey in curbing HIV transmission rates.
In both Anastos’ article, “Women – The Missing Persons in the AIDS Epidemic, Health/PAC Bulletin,Winter”, and thee CBS article, “Should Gay men be permitted to donate blood?”, we see an obvious stigmatization of people with AIDS. In Anastos’ article, several cases of women who were afflicted with the disease were presented, and the prevalence of the AIDS stigma is affected. Another sad fact is the ban on homosexuals from donating blood. It is unfortunate that many homosexuals who have clean blood cannot donate due to an irrational fear. Any blood donated is screened, so having this ban should seem superannuated. Many people day in our country due to lack of blood, and it is heart breaking that willing people can’t donate blood. However, as Michael mentioned in his blog post, the country seems to be moving towards the right direction. Hopefully such policies will be overturned.
This weeks readings on AIDs were, to put it bluntly, highly depressing. The sheer hopelessness associated with the disease and its rapid spread and affliction among young and otherwise healthy members of the population was truly sad to read about. The piece by Oppenheimer was clear and succinct in its statement of the numbers and of the emotional toll the epidemic took on those in the health profession. The idea of receiving a test result and then having to routinely tell young people they were going to die would for me be a major deterrent from the health profession. The fact that physicians of AIDs patients were left with the option of essentially shepherding people to their death, one that by all means possible should be made pain free, is very sad. “To die with dignity, a patient had to come to terms both with the imminence of death and the stigmatizing cause of the disease” (Oppenheimer, 178).
Oppenheimer’s piece contains many excerpts from physicians of AIDs patients, all of whom discuss the many stigmatizations associated with the disease. How parents often wouldn’t come to visit their dying children because they “didn’t want to condone such a lifestyle,” or the dialectic to that which was parents in complete denial, overly obsessed with every minute detail of hospital care so as to distract themselves from the fact that their child was in fact dying. Most of the stories recounted by the physicians were truly heart wrenching.
This week’s readings showed a progression from the belief that AIDs affects only homosexual males to the realization that it affects all people, including heterosexuals. I was very disheartened while reading these articles to see the degree of stigmatization that emerged when AIDs was discovered, and to see that this stigmatization is still rather prevalent in our society today. What stood out to me the most is that gay men are prohibited from donating their blood, while it has been made clear that AIDs does not discriminate between its victims. CBS News even stated that the nation’s blood supply could increase by 1.4% if the ban is removed, and as David has mentioned, the donated blood is screened. I just can’t see why the people in charge are using these stigmas to restrict a certain group of individuals from doing a good deed that would benefit people in need.
This week’s readings reminded me of one of my favorite HBO specials, “And The Band Played On”. The movie encompassed all of the issues of the AIDS epidemic during the 80s including the stigmas involved, the lack of response from the federal government in acknowledging the disease, the personal hardship of those afflicted with the disease and the absence of money to the CDC. After reading this week’s articles, I can connect them to the reading I had.
In reading Professor Oppenheimer’s article, the hardships of the doctors and their patients is highlighted. At the time, there weren’t any clues as to what AIDS truly was or how to effectively treat the condition. Basically, AIDS victims were a ticking time bomb of death and all the doctors could do was wait. Unfortunately the solution came later on as a cocktail and it took years to develop. Furthermore, the stigmas attached to the disease negatively affected the gay population, even until today. One could easily compare the stigma against the homosexual lifestyle to the stigma against the black population during the Tuskegee study. In both, groups were stigmatized against and treated differently publicly and medically due to their individuality.
I believe that the ban that prevents homosexual men from donating blood is outdated. Especially when there is such a shortage of blood donations, the ban does not make sense to me. When men who have had sex with those they have confirmed have HIV are only banned from giving blood for a year, how does it make sense to prevent gay men from donating at all? HIV screening technology has developed enough that it no longer takes weeks to determine whether an individual has the virus. If not removing the ban completely, gay men should only be banned from donating for one year because right now, it seems to be making more of a political statement than anything else.
The line that stuck out the most for me in “Women – The Missing Persons in the AIDS Epidemic” was “similar symptoms in both women and men are interpreted and treated differently, because women are not expected to have AIDS.” The author goes on to explain how women are often under-diagnosed and its not until they show dangerous symptoms that they are treated for the more extreme illness. This may be a explanation as to how there is a bias to statistics. Women are seen more as vectors than victims. They are blamed for passing the virus on to their sexual partners and babies but they are not seen as sufferers themselves.
With regard to what Pranitha said, the ban that prevents homosexual men from donating blood is outdated; rather, there is a ban against people homosexual men who are only recently sexually active. Michael is definitely right in citing the difference between now and 1992 – advances in medication have come a long way and, although AIDS can affect heterosexuals, there are a myriad of preventive measures one can take to protect themselves from contracting the deadly virus. I agree with Pranitha that it doesn’t make sense to stop gay men from giving blood; it should be, as it is, based on sexual activity, not sexual orientation. Despite the stigmas that lie in AIDS as illustrated in the “Women and AIDS” article, there is more overarching sympathy and understanding of the disease now than there was two decades ago.
This week’s readings revolve around the change in the way public health has viewed the HIV infection and AIDS over time. I particularly liked Mike’s comment about how our perspectives differ from those of our parents because it is true. The disease and the stigma surrounding it was at the forefront of public health before our time, so what we know about AIDS we learn either in school, from the media, or from our parents. It was never something that we had to be worried of contracting. Before reading this week’s readings, I searched “famous people that died from AIDS” on Google just because I was curious and wanted to put the topic into perspective. I clicked on the first link that came up, and I found it interesting that the website only listed men. What about the women? We often hear only about the homosexual men having AIDS, but there had to be women with the disease. It was only after the fact that I realized we had a reading entitled “Women-The Missing Persons in the AIDS Epidemic.” Anastos mentions that women are underdiagnosed because they are not expected to have AIDS. This is obviously problematic, and it reminded me of what I learned about boys with ADHD in my psychology class. It turns out that like women and AIDS, young boys with ADHD are often mis/underdiagnosed because they claim that boys are expected to exhibit the kinds of behaviors in children with ADHD (jumpy, impulsive, can’t still still or pay attention). They expect boys to act this way, just like they expected the women to be HIV negative. In both cases, the individuals suffering are not getting the proper treatment, and for those with AIDS, this could mean death. This angers me and I hope that as time goes on, public health works to eliminate biases and expectations so that everyone gets diagnosed and treated for what they truly have.
This week’s readings covered the history of many social aspects of the AIDs Epidemic. Bayer’s statement in “Public Health Policy and the AIDs Epidemic” sums up the overall transformation well. He says that decisions regarding “resources for prevention, research, and the provision of care, will be affected by the changing perspective on AIDs.” This statement is demonstrated by all the readings. It is obvious that the progress we have made in overcoming this epidemic have only been reached by decreasing stigmas and other social obstacles. In his article, Professor Oppenheimer describes the shame of the situation of a parent’s child dying with AIDs. These parents would not want to visit their sick children because they somehow translated this as “condoning such a lifestyle.” This is exactly the type of thinking we have worked, and must continue to work, to eliminate. Today, problems such as illegal drug use are stigmatized, and perhaps rightfully so. However, societal stigma will take us nowhere to solve the problem this overarching problem has caused. In order to solve this problem, we must recognize it and address it, rather than shun the people who face it on their own. Oppenheimer powerfully states, “To die with dignity, a patient had to come to terms both with the imminence of death and the stigmatizing cause of the disease,” making us realize that no one should have to go through such physical and social suffering.
The AIDS virus and its precursor HIV have been the center of controversies since the diseases first gained prominence during the 1980’s. As Michael, so astutely put it, “What…made HIV/AIDs so feared in society is its base in unaccepted social behaviors, [such as homosexuality, intravenous drug use, and the sex trade] and the stigma that is associated with these behaviors. Because of the associated behaviors that historically have accompanied most HIV/AIDS patients, HIV/AIDS has become one of the most stigmatized diseases of our time.
Another cause that had lead to the stigmatization of HIV/AIDS over time has been the HIV exceptionalism stance that public health took during the early to mid 1980’s to address these public health concerns. HIV exceptionalism became the common term to describe the trend at the time “to treat AIDS differently from other diseases, including other sexually transmitted, infectious, lethal diseases in law and policy.” (http://en.wikipedia.org/wiki/HIV_exceptionalism) Under this policy, testing for HIV/AIDS was not mandated in any way. Even in risky circumstances such as pregnant women, these tests were not required because it was not defined as a sexually transmitted and communicable disease like syphilis and hepatitis B in which testing was mandatory. (Bayer, Ronald. Public Health Policy and the AIDS Epidemic: An End to HIV Exceptionalism?)
While that and other exceptionalism policies had good intentions, in the end they only worked towards creating further stigmatization of HIV/AIDS victims. As treatments have advanced, the realities of living with HIV/AIDS are no longer what they once were during the 1980’s. However, these advancements have still haven’t done anything to alleviate the stigmatization that all HIV/AIDS victims are homosexual males or otherwise drug abusing individuals who trade sex to feed their addictions.
After two decades of HIV exceptionalism policies, education about the realities of HIV/AIDS victims have led to an emphasis being placed on de-stigmatizing HIV/AIDS and its victims. By the 1990’s, states began classifying HIV/AIDS as a “sexually transmitted or venereal disease,” furthermore “twenty-two states had classified them as communicable disease, infectious diseases or both.” (Bayer, Ronald. Public Health Policy and the AIDS Epidemic: An End to HIV Exceptionalism?) By placing HIV/AIDS under this umbrella term, public health may now address these and other issues in the same or similar ways that they have addressed other sexual health epidemics.
Unfortunately, despite these changes in public health policies, victims of HIV/AIDS have still faced negative stigmatization. For example, a “ban [that] has been in place since the 1980’s,” which prohibits sexually active homosexual men from donating blood is still a current law even though many people now acknowledge that it is outdated. (CBS News. Should Gays Be Allowed to Donate Blood?) This law reflects the outdated belief that HIV/AIDS only affected sexually active homosexual males. As the CBS article accurately pointed out, “men who [have] acknowledged having sex with an HIV-positive woman or with a prostitute are banned from donating blood for only one year.” A straight man that has had sex with an HIV positive woman definitely has a higher risk of contracting HIV and sequentially passing on the virus, than the average sexually active homosexual man.
While historically the virus has been more prevalent in the homosexual community as opposed to the heterosexual community, the virus itself does not discriminate. The HIV/AIDS virus can infect anyone regardless of sexual orientation, gender or age. In fact, according to Women- The Missing Persons in the AIDS Epidemic by Kathryn Anastos and Carola Marte, 18% of the HIV/AIDS cases in New York City are women, and even that number is believed to be under-presented. 18% is a statistically significant proportion of cases, that shouldn’t be overlooked.
However, because stigmatization associates male homosexuality with HIV/AIDS, many of these cases are overlooked. Straight men who have had sex with an HIV positive woman can donate their blood after only one year, while homosexual men who can test negative for HIV year after year are banned from donating blood. Women can go years without being diagnosed with HIV because many doctors don’t even consider HIV to be an option for most women. These are cases that shouldn’t even occur with the technology and medical advancements available today, however are still possible due to popular beliefs as a result of stigmatization. While there have been efforts to de-stigmatize HIV/AIDS and its victims, clearly more has to be done not only to do justice to those living with the virus but even those who remain HIV negative.
Much like the readings about the stigmatization of smoking, this week’s readings deal with understanding the difference between fearing a disease and fearing the people who have the disease. In the early days of HIV, when people were trying to figure out where this deadly disease came from, it was easy to assign all the blame on gay men, because that would make it a problem separate from the rest of the population. But as time passed it became apparent that wasn’t the case. I remember seeing a movie about Alison Gertz, a young, wealthy white woman who contracted HIV through sex. When she shared her story in 1989, she was the polar opposite of what people expected an AIDS patient. Gertz became a poster child for the AIDS movement, symbolizing that this disease can happen to anyone. In that same year, Kathryn Anastos wrote her article about how women were the unseen side of the AIDS epidemic. Though these stories created awareness about how widespread the disease was, they didn’t exactly help decrease stigmatization. As others have said, AIDS was still considered to be a disease that affected those who behaved dangerously, by engaging in drug use or promiscuity. This sort of thinking is evidenced by the continuing ban on gay men donating blood. It’s outrageous to that after all this time such an ignorant rule is still upheld, but it’s also notable that people are questioning and fighting it. In that way, we can see how the understanding of a disease changes over time, and we can maybe predict a less judgmental future.
Although it is clear that AIDS stigmas are inaccurate and that disease do not simply pick and choose which groups of people to effect, AIDS is perhaps the most highly stigmatized disease. The disease was largely believed to affect ONLY homosexual men and IV drug users. However, this is of course not the case. These two groups were most hard-hit when the disease first broke out in the 1980s, but it did not confine itself there. Especially now, AIDS is more and more affecting heterosexuals. This is why stigmas are dangerous. They are largely stereotypical and inflict fear and self-loathing into the groups that are being stigmatized. This can be translated into a refusal to get tested or to make their testing results known, which are actions that can have fatal effects. If stigmatization can be somehow taken away or decreased and people can focus on effectively helping those with AIDS, it would be much easier to find solutions to the disease.
We have discussed stigma associated with disease in our past readings. AIDS initially infected homosexuals, drug users, and people who received contaminated blood transfusions. As Sarah said, stigmas are very dangerous. Believing that AIDS only affected homosexuals, druggies and people receiving blood transfusions made certain people believe they would never contract the disease. Heterosexuals were not as cautious when engaging in sexual activity. But, as we see, AIDS does not discriminate. It can affect anyone. I watched a documentary a few years ago about Magic Johnson and his struggle with AIDS. He was incredibly embarrassed about it, but proved that AIDS could affect anyone, even a famous basketball player like him. Through his efforts and others, the stigma around AIDS has decreased. It is important that people become aware and take preventative measures. Many organizations are now providing free rapid HIV testing and encouraging young people to get tested. It is also important for individuals to receive sex education and learn what they need to do to prevent the spread of the disease.
These readings illustrate the extent to which stigmatization can affect public health policy. It is frightening to see that stigmatization can limit the effectiveness of the public health response. Seen as the “gay disease,” AIDS has often been overlooked in other vulnerable populations and has been attributed to those leading “questionable” lifestyles. As in the last few week’s readings, this week’s readings show how dangerous stigmatization and prejudice can be. The discussion of the stigmatization associated with AIDS wrapped up the semester succinctly, by going from a discussion on the effects of politics and legislation on public health to a discussion on how greater societal variables can affect the public health response.