Shoulders To Stand On                                                                           EC October Issue 2016

AIDs Research and Treatment

Research and treatment of a disease ultimately begin with its identification.  The next task is to determine cause and then how it is transmitted.  Once these are determined, and only then can you do the research to find effective treatments.  Unlike many diseases but similar to STD’s, AIDS is transmitted by sexual behaviors.  It is not air born, carried by insects, or transmitted             through foods and/or the water supply.  It is carried by human beings and transmitted by human sexual contact and by sharing needles.  Determining the cause and the modes of transmission took time.  However it only after these are determined that you can begin to research treatment through medicines and behavioral changes.  Over the next few months we will look at each of these components.  We will review how AIDS was identified, and the cause,  Then we will look at the research and treatments to find effective ways to provide quality of life for those infected and the vision for a cure.

The AIDS epidemic in the United states Officially began with the publication in the June 8, 1981 issue of Morbidity and Mortality Weekly Report (MMWR), the bulletin of the Centers for Disease Control (CDC) of a report of five cases of Pneumocystis carinii pneumonia from the University of California at Los Angeles (UCLA) Medical Center.  Dr. Michael Gottlieb, graduate of the University of Rochester School of Medicine and Dentistry in 1973, was the first to identify the disease in 1981, and wrote the CDC about five patients which resulted in the CDC bulletin.  When AIDs turned 20, Dr. Michael Gottlieb wrote in the New England Journal of Medicine, June 7, 2001, the following: ”Since June 5, 1981 AIDS has claimed more than 21 million lives, including more that 438,000 in the United States.  Gottlieb refers to Susan Sontag, a cancer patient, who pointed out that AIDS carried a greater social stigma than cancer in her 1989 book AIDS and Its Metaphors, an extension of her 1978 book Illness as Metaphor. Susan noticed in 1978 that the cultural myths surrounding cancer negatively impacted her as a patient.  Susan found that a decade later in 1989 cancer was no longer swathed in secrecy and shame, but had been replaced by AIDS as the disease most demonized by society. Susan sontag theorized that the metaphors associated with disease contribute not only to stigmatizing the disease, but also stigmatizing those who are ill. She believed that the distractions of metaphors and myths ultimately cause more fatalities.  Michael Gottlieb in this article follows by stating that from the very first days, AIDS was a polarizing issue, and one that society and its institutions – including academic medicine – were reluctant to take up.  The neglect of the disease and the patients it attackedwas sadly predictable; after all, this epidemic was linked to sexual behavior and intravenous drug use and affected groups that were already marginalized.  Discussions of public health strategies to contain the disease aroused anxiety in the homosexual population about possible draconian measures.  These understandable fears contributed to the difficulty of striking a balance between the civil rights of infected persons and the right of other members of society to be protected from a fatal disease.

Gottlieb goes on to state that at teaching hospitals (University of Rochester, and others), the directors of residency programs worried that having large numbers of patients with AIDS on their wards would make it more difficult to recruit the best applicants.  Some clinicians feared  for their own safety in caring for patients with AIDS;  indeed, the denial of care was not unusual.  Over the years, however, this inglorious anxiety was difused by the adoption of universal precautions for the handling of blod.  By now in 2001, most physicians, including many who were trained during the early 1980’s are accustomed to caring for HIV infected patients with concern and compassion.

The stigma and fear of AIDS was, and still is, in part based on the fact that HIV in its earlier years in the United States was marked by an affliction of very specific risk groups – homosexual men and intravenous drug users – groups that society shunned, de-valued as human beings, and scape goated for societal ills.   The patient with HIV was perceived to be responsible for his own illness because of the unsafe habits that one seemingly had to pursue to contract it – “indulgence, delinquency – addictions to chemicals that are illegal and to sex regarded as deviant.” Having these defined subgroups created a distinction between the ill and potentially ill, and the general population.

AIDS was seen as a plague and as a judgment on the individuals suffering from it. Despite the fact that it is a heterosexual disease as well as a global issue, it is still often discussed as a consequence of decadence and a punishment for “deviant” sexual behavior.

Although HIV was likely not a new virus, its emergence changed attitudes towards illness and medicine. Infectious diseases have clearly not been as summarily defeated as society would have preferred to believe.

These societal attitudes were a major reason why services and financial resources were slow to come.  The judgments on the illness and the patients are still implicit in any discussion today.  Attitudes and perceptions do not change that much over time.  Certainly the number of visible well known celebrities, activists, and political figures who are gay and/or HIV positive have altered to some degree those pre-conceived visceral reactions and attitudes.  Today, the fear and stigma of HIV positive people is less because of treatments that allow you to live with this disease, and the invisibleness that comes with successful treatment.  In the 1980’s this fear and stigma were a major barrier in determining the cause.  There were numerous theories regarding the cause of AIDS, many of which now seem eccentric.  We will look at these, the discovery of the virus that causes AIDS and the first FDA approved drug for treatment in future issues.

Shoulders To Stand On would like to recognize Susan Sontag for the work she and others did to deconstruct the fearmongering, stigmatizing, and dehumanizing attitudes toward cancer and AIDS.  We all must carry on this work of deconstructing the attitudes of oppression and prejudice within ourselves and those we know.  Shoulders To Stand On is grateful for all of those who have and continue to raise their voices in our struggle to be free and proud of who we are as gay, lesbian, bisexual, transgender, and gender variant men and women.

Rochester AIDS History Chapter 19

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