by Dylan A. Estes[1]
The Human Immunodeficiency Virus and its associated disease, Acquired Immunodeficiency Syndrome, have profoundly affected medical, social, and political aspects of society since they first came to national prominence in the 1980s. Few medical syndromes have impacted the American psyche as much as HIV. The HIV virus was generally equated only with promiscuous, homosexual men when it first emerged, but today it is recognized by the layperson as the cause of a disease that anyone may contract, regardless of their social qualifiers. Attitudes towards those afflicted with AIDS have improved significantly since the disease’s first appearance in the United States. As these attitudes have changed, improving treatments have been discovered that render AIDS a chronic condition instead of a fatal disease.
The Makings of a Deadly Disease
In 1982, AIDS was first described in medical literature as an unusual combination of clinical diseases, i.e., Pneumocystis jirovecii pneumonia and Kaposi’s sarcoma, in homosexual men living in Los Angeles County and Orange County, California.[2] Some referred to the condition as GRID (Gay-related Immune Deficiency) because of its association with gay men at that time.[3] This term was later abandoned in favor of AIDS, which has a more neutral connotation, as further research indicated that other populations could also contract the disease.
AIDS is the penultimate step in disease progression before death in an untreated HIV infection. People most typically acquire HIV by sexual intercourse through exposure to the semen or vaginal secretions of an infected person. It can also be acquired in utero from an infected mother or by exposure to contaminated blood from a blood transfusion or contaminated needle. However, contraction in utero and by blood transfusion are both uncommon due to enhanced prenatal testing and screening of transfusion blood products.[4] There are several risk factors for HIV infection, such as presence of other sexually transmitted infections, history of many sexual partners, and nitrite inhalant (“poppers”) use.[5]
HIV causes illness by infecting and destroying the CD4 T-cell, a type of white blood cell of central importance to the immune system. The destruction of CD4 cells compromises the immune system’s ability to fight certain types of infections and cancers. After infection, an initial short primary disease syndrome develops consisting of non-specific flu-like symptoms such as malaise, fatigue, fever, sore throat, and lymphadenopathy.[6] There is some evidence that a more severe primary illness indicates faster progression to AIDS.[7] After about six months, the infected individual will enter a steady state of asymptomatic clinical latency in which the number of copies of the virus in the blood slowly rises, with a concomitant slow fall in the number of CD4 cells, over a period of several years.[8]
AIDS is diagnosed when the number of CD4 cells in the blood falls below 200 cells per cubic millimeter (cells/mm3). However, some patients may develop the clinical symptoms of AIDS despite having a CD4 count above this threshold (by comparison, a normal count in a healthy individual is generally accepted to be between 500 cells/mm3 and 1000 cells/mm3). These patients are also diagnosed with AIDS. Clinically, AIDS presents in the untreated person as a collection of opportunistic infections that would not normally be found in a healthy individual. These infections arise from cell-mediated immune system deficiency. The most common of these are Pneumocystis jirovecii pneumonia, esophageal candidiasis, Kaposi’s sarcoma caused by Human Herpesvirus-8 infection, and disseminated Mycobacterium avium complex infection.[9]
Without treatment, the CD4 level continues to fall. A count below 50 cells/mm3 is referred to as advanced HIV infection. This is the final form of disease before death. Clinically a patient with advanced HIV infection will have severe and disseminated infections, and untreated patients in this condition usually have an expected survival time of only 12 to 18 months.[10]
A Moral Quandary
Social attitudes towards those afflicted with HIV/AIDS when the complex first emerged in the 1980s were predominantly negative and driven by stereotypes about homosexual men. The Ronald Reagan administration was totally silent on HIV/AIDS for several years, which created a vacuum in public discourse and allowed conversations about HIV/AIDs to focus on the “moral politics of homosexuality, sexual promiscuity, and intravenous drug use.”[11] The United States Surgeon General, Dr. Charles Everett Koop, was “prevented from addressing the nation’s most urgent health crisis, for reasons he insisted were never fully clear to him but that were no doubt political.”[12] During this time, AIDS was a disease predominantly affecting homosexual men. Reagan and his closest advisors held the view that those afflicted with AIDS “brought the disease upon themselves” and were “in greater need of moral reform than of new health information or policies.”[13] Koop was prevented from participating in the Executive Task Force on AIDS that was created in 1983 for two years, and journalists were even barred by Assistant Secretary of Health Edward Brandt (to whom Koop answered) from asking any questions pertaining to HIV or AIDS.[14] Brandt himself later faced grassroots level hostility from conservatives for scheduling an appearance at a ceremony sponsored by the National Gay Task Force to present an award to the Blood Sister Project of San Diego, recognizing the group’s work in collecting blood for AIDS victims. Brandt later cancelled the appearance under pressure from the conservative American Life Lobby, and eventually was ousted from the Reagan administration.[15]
It wasn’t until February 1986 that President Reagan ordered the Surgeon General to prepare a report on AIDS.[16] The report was kept highly secret during its development: Koop wrote the report himself in the basement of his home on the National Institutes of Health campus in Bethesda, Maryland, with the help of only a few close advisors.[17] Careful steps were taken during its approval process to prevent leaks to the press.[18] The report was finally released the following October.[19]
While the politics of the Reagan administration clearly singled out gay men in any discussion of AIDS, Koop’s report was surprisingly candid and accurate. He wrote that, “[although] the initial discovery was in the homosexual community, AIDS is not a disease only of homosexuals. AIDS is found in heterosexual people as well.” He went on to write that “AIDS will probably increase and spread among people who are not homosexual or intravenous drug users.”[20] Koop argued against many of the knee-jerk reactionary policies being discussed in the public discourse at the time, such as compulsory blood testing for the HIV virus, identifying carriers by “some visible sign,” or quarantining individuals with AIDS, arguing these actions were either unnecessary or cost-prohibitive.[21] The report frankly emphasized monogamy and the use of condoms as the most effective means of preventing the spread of the HIV virus among sexually active people.[22] It also encouraged early sex education in grade school.[23]
Reactions to the Surgeon General’s report highlighted the poor social attitudes of the time towards those afflicted with HIV/AIDS. Arguing against a straw man, Koop’s harshest critics complained that following his advice would require “third graders be taught about sodomy and that 8-year-olds be given condoms.”[24] Conservative and anti-feminist icon Phyllis Schlafly called the report a directive to “institute grammar school sodomy classes.”[25] Conservatives renewed calls for mandatory blood testing, and public opinion polls at the time even showed most Americans approved of mandatory blood testing for HIV, leading politicos to speculate that Republicans would use AIDS as an issue in the 1988 presidential election.[26]
President Reagan remained silent on the issue throughout the winter of 1986.[27] It wasn’t until the following spring that he finally spoke about AIDS when he agreed to Senate demands to form a presidential commission to advise him on public health matters related to the epidemic.[28] He also eventually agreed to address an AIDS fundraiser.[29] His address turned out to be little more than a political stunt to stave off criticism; the address focused not on education about the disease, but about testing, with no guarantees of confidentiality or civil rights protections for people with a positive test result.[30] He floated the idea of mandated testing at marriage license bureaus; but as heterosexual couples were rarely affected by HIV/AIDS, this action was unlikely to save any lives.[31]
A Critical Moment
Misguided public attitudes towards people with HIV continued well into the 1990s, but began to improve as a handful of celebrities and other well-known figures began to announce that they were burdened with the virus. Professional basketball player Magic Johnson announced in November 1991 that he had become infected with the virus and shortly thereafter founded the Magic Johnson Foundation to provide education on HIV and AIDS.[32] In the following years there was some evidence published in academic literature that public figures such as Magic Johnson sharing their disease status may have influenced a change in attitudes about AIDS and influenced risk-reducing behavior in some individuals.[33] One political scientist even went so far as to proclaim that the “loudness” of Johnson’s announcement, combined with his statement that “it could happen to anybody, even me,” was enough to create a “critical moment in the evolution of public opinion about AIDS, and it therefore should have produced a change in the structure of opinion, a durable shift in the type of values people use when deciding where they stand on policies dealing with the disease.”[34]
Emerging Treatments, Emerging Frustrations
Zidovudine, also known as azidothymidine or AZT, was approved in 1987 as the first medication to treat HIV/AIDS.[35] Initially, the Food and Drug Administration (“FDA”) approved use of AZT only for those with “advanced illness characterized by Pneumocystis carinii pneumonia[36] and depressed immunity and for symptomatic cases of AIDS-related complex (ARC). It did not, however, recommend approval of zidovudine for treatment of pre-AIDS or nonadvanced AIDS cases with other opportunistic infections.”[37] The approval of zidovudine was a blessing at the time for those who needed it most because of its documented clinical benefit for those suffering from AIDS.
However, zidovudine has several drawbacks. It is highly toxic. It must be used cautiously because it causes symptoms such as nausea, muscle aches, insomnia, severe headaches, and induction of macrocytosis in most patients, which causes anemia requiring blood transfusions in some.[38] Zidovudine and the other medications of its class approved in the following years were only a form of treatment for AIDS but not a cure. When used alone, they significantly delay the onset of advanced HIV infection but do not prevent it.[39] By 1993, it was clear that the HIV virus was highly mutable because it replicates rapidly, which allows it to resist drugs such as zidovudine and the other antiretroviral medications.[40] Eventually, the scientific community accepted that effective HIV/AIDS treatment would require multiple-drug regimens aimed at targeting different components of the HIV virus.[41] In 1990, when zidovudine remained the only drug treatment approved by the FDA, one physician even wrote that “a disease once viewed as an automatic death warrant is now in the process of becoming a chronic, potentially long-term treatable illness.”[42]
The long break between the approval of zidovudine and the next pharmacologic breakthrough in the treatment of HIV/AIDS intensely frustrated those affected by the disease. The development of new forms of treatment seemed hampered by the slow process of medication approval in the United States. Dr. Alvin Friedman-Kein, a dermatologist in New York, wrote in an article in 1990 that “the time-honored, double-blind, placebo-controlled study design traditionally used to evaluate potential drugs is no longer acceptable in patients with HIV infection in view of the fatal prognosis associated with AIDS.”[43] He also wrote that “it is likely that future treatment trials with promising drugs for HIV infection . . . will be evaluated only in an ‘open,’ unblended fashion, or will be tested in comparison with such agents as zidovudine or other medications that have previously been shown to have beneficial effects.”[44]
His prediction was startlingly accurate. As patients continued to wait for new forms of treatment, an AIDS activist movement formed that successfully fought for inclusion in committees in the National Institutes of Health and the FDA, both of which were involved in drug development and approval.[45] Activists also successfully influenced reforms in the FDA drug approval process through legislation that cut FDA review times in half and allowed for quicker access to new medications despite safety concerns.[46]
Changing Definitions
The next pharmacological breakthrough was the emergence of a new class of medications known as the protease inhibitors that acted on the HIV virus by a different mechanism than previously used medications. The first drugs of this class, saquinavir and ritonavir, were approved by the FDA in late 1995[47] and early 1996[48], respectively, both via the FDA’s accelerated approval program. The combination of the protease inhibitors with earlier classes of drugs resulted in pharmacological treatment of multiple targets of the HIV virus, a treatment regimen referred to by clinicians as Highly Active Antiretroviral Therapy (HAART).[49] Within two years of the emergence of this new class of medications, the number of annual deaths from AIDS in the United States fell by over half according to the Centers for Disease Control, from a high of 75,457 in 1992 to 17,489 in 1999.[50] The emergence of the protease inhibitors therefore made HIV a manageable chronic condition rather than a death sentence.
Evolving Attitudes
As HIV/AIDS treatment has improved, stigmas against the disease and the people enduring it has decreased. One extensive study published in 2011 by the Kaiser Family Foundation, a non-partisan health policy foundation, found that prejudices have begun to subside despite some lingering stigmatization of the illness. According to Kaiser, the number of people who say they would be “very comfortable” working with an HIV-positive person has increased from about one-third to about one-half since 1997. Even more notably, while 43% of people believed that AIDS was a “punishment for the decline in moral standards” in 1987, only 16% of people held that view in 2011. Similarly, the view that acquiring HIV/AIDS is the victim’s own fault fell from 51% to 29% between 1987 and 2011.[51]
However, the Kaiser Foundation is concerned that attitudes may be evolving too slowly and that HIV/AIDS is an illness that disproportionately affects the African American community.[52] They go on to note that as the illness has become a manageable condition, and less of an “urgent threat,” the public has had a declining sense of urgency about the condition. People have also had a noted desire for more information, which may indicate inadequate education about the disease.[53]
Notably absent in the new millennium, however, is almost all of the impulsive, reactionary, and hateful rhetoric about those with HIV or AIDS that once dominated public discourse on the subject. The days of policy proposals involving quarantine, mandatory testing, and the like are gone. In hindsight, it is apparent how driven by panic such ideas were. These ideas have been replaced by renewed investments in research, education, and treatments. President George W. Bush’s administration organized the President’s Emergency Plan for AIDS Relief (PEPFAR) that committed more than $15 billion from 2003-2008 to infection treatment with antiretroviral medications and infection prevention in fifteen African countries.[54] This program is often overlooked due to the highly controversial nature of many other policies during Bush’s presidency.
The Clinton Health Access Initiative (CHAI) is another global health initiative, this one organized by the Bill, Hillary & Chelsea Clinton Foundation in 2002, to expand access to treatments for HIV/AIDS.[55] According to CHAI, President Clinton negotiated major price reductions in antiretroviral drugs on October 23, 2003, cutting costs for such medications by at least a third.[56] Such initiatives by Presidents Bush and Clinton highlight a changing public perspective and attitude about helping those afflicted with HIV/AIDS.
What Lies Ahead
The stigmas faced by HIV/AIDS patients has decreased in the three decades since the first cases of AIDS were reported. The federal government is now willing to subsidize antiretroviral treatments and research, whereas the Reagan administration and members of congress in the 1980s appeared reluctant to act for political reasons. The public conversation on HIV/AIDS has shifted from one of panic to one that is well-informed and receptive.
But there is still work to be done. Specifically, more research needs to be conducted to find a vaccine for the causative virus. Biotechnology companies like GeoVax continue to work towards the goal of a safe and effective vaccine, but as of today there is no demonstrably effective vaccine for HIV that has been approved by the FDA. Hopefully a successful vaccine will be announced soon, which will push HIV/AIDS to the history books in a similar fashion as diseases like polio or the measles.
______________________________________
[1] Dylan Estes is a medical student at the University of Arkansas for Medical Sciences and will graduate in May of 2016. Before entering medical school, he completed a Bachelor’s degree in United States History at the University of Central Arkansas, where he did extensive work in African American studies. He was born and raised in Mountain Home, Arkansas. His academic interests are varied and include health insurance reform and health care access for marginalized groups. He plans to practice primary care.
[2] “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 Morbidity and Mortality Weekly Report 31, no. 23 (1982): 305-307.
[3] Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin’s Press, 1987), 121.
[4] MW Adler, “ABC of AIDS: Development of the epidemic,” The BMJ 322, no. 7296 (2001): 1226.
[5] SP Buchbinder et al., “Sexual risk, nitrite inhalant use, and lack of circumcision associated with HIV seroconversion in men who have sex with men in the United States,” Journal of Acquired Immune Deficiency Syndromes 39, no. 1 (2005): 82.
[6] MT Niu, DS Stein, and SM Schnittman, “Primary human immunodeficiency virus type 1 infection: review of pathogenesis and early treatment intervention in humans and animal retrovirus infections,” Journal of Infectious Diseases 168, no. 6 (1993): 1490.
[7] C Pedersen et al., “Clinical course of primary HIV infection: consequences for subsequent course of infection,” The BMJ 299, no. 6692 (1989): 154.
[8] C. Bradley Hare, MD, “Clinical Overview of HIV Disease,” HIV InSite: Comprehensive, up-to-date information on HIV/AIDS treatment, prevention, and policy from the University of California San Francisco, January 2006, http://hivinsite.ucsf.edu/InSite?page=kb-00&doc=kb-03-01-01 (accessed November 16, 2014).
[9] Ibid.
[10] R Yarchoan, DJ Venzon, JM Pluda, J Lietzau, KM Wyvill, AA Tsiatis, SM Steinberg, and S Broder, “CD4 count and the risk for death in patients infected with HIV receiving antiretroviral therapy,” Annals of Internal Medicine 115, no. 3 (1991): 184.
[11] “The C. Everett Koop Papers: AIDS, the Surgeon General, and the Politics of Public Health,” Profiles in Science: National Library of Medicine, http://profiles.nlm.nih.gov/ps/retrieve/Narrative/QQ/p-nid/87 (accessed October 20, 2014).
[12] Ibid.
[13] Ibid.
[14] Ibid.
[15] Phil Gailey, “G.O.P. Aides Organize On Homosexual Issues,” New York Times, May 16, 1984, http://www.nytimes.com/1984/05/16/us/gop-aides-organize-on-homosexual-issues.html (accessed October 29, 2014).
[16] National Library of Medicine, “The C. Everett Koop Papers.”
[17] Ibid.
[18] Ibid.
[19] Ibid.
[20] C. Everett Koop, Surgeon General’s Report on Acquired Immune Deficiency Syndrome (Rockville: U.S. Public Health Service, 1986), 14.
[21] Koop, Surgeon General’s Report, 33-34.
[22] Koop, Surgeon General’s Report, 16-17.
[23] Koop, Surgeon General’s Report, 31.
[24] Holcomb B. Noble, “C. Everett Koop, Forceful U.S. Surgeon General, Dies at 96,” New York Times, February 25, 2013, http://www.nytimes.com/2013/02/26/us/c-everett-koop-forceful-surgeon-general-dies-at-96.html (accessed October 29, 2014).
[25] Shilts, And the Band Played On, 588.
[26] Shilts, And the Band Played On, 588-589.
[27] Shilts, And the Band Played On, 589.
[28] Shilts, And the Band Played On, 589-595.
[29] Ibid.
[30] Ibid.
[31] Ibid.
[32] “Overview,” Magic Johnson Foundation, http://magicjohnson.org/about-us/overview (accessed November 1, 2014).
[33] D. Hollander, “Publicity About Magic Johnson may have Led Some to Reduce their Risky Behavior, Request HIV Testing,” Family Planning Perspectives 25, no. 4 (1993): 192-193.
[34] Philip H. Pollock III, “Issues, Values, and Critical Moments: Did ‘Magic’ Johnson Transform Public Opinion on AIDS?” American Journal of Political Science 38, no. 2 (1994): 428-430.
[35] Itzhak Brook, MD, “Approval of Zidovudine (AZT) for Acquired Immunodeficiency Syndrome: A Challenge to the Medical and Pharmaceutical Communities,” Journal of the American Medical Association 258, no. 11 (1987): 1517.
[36] Pneumocystis carinii is an antiquated term that was used until 1999 to refer to the causative agent of Pneumocystis pneumonia in both animals and humans. The term used today is Pneumocystis jiroveci, which distinguishes the illness occurring in humans from that which occurs in animals.
[37] Brook, “Approval of Zidovudine,” 1517.
[38] Douglas D. Richman, MD, “The Toxicity of Azidothymidine (AZT) in the Treatment of Patients with AIDS and AIDS-Related Complex,” New England Journal of Medicine 317, no. 4 (1987): 192-197.
[39] “Overview of HIV Treatments,” HIV/AIDS Basics, http://www.aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-aids/treatment-options/overview-of-hiv-treatments (accessed November 16, 2014).
[40] Douglas D. Richman, MD, “HIV Drug Resistance,” Annual Review of Pharmacology and Toxicology 33 (1993): 149-160.
[41] Richman, “HIV Drug Resistance,” 160.
[42] JJ Zurlo and HC Lane, “The Role of Antiretroviral Therapy in Living Long and Living Well,” Maryland Medical Journal 39, no. 2 (1990): 161-165.
[43] Alvin E. Friedman-Kien, MD, “What We Now Know — and Must Do — About HIV Disease and AIDS,” Journal of the American Academy of Dermatology: Part 2 22, no. 6 (1990): 1163-1166.
[44] Ibid.
[45] Steven Epstein, “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials,” Science, Technology, & Human Values 20, no. 4 (1995): 410.
[46] Mary K. Olson, “Pharmaceutical Policy Change and the Safety of New Drugs,” Journal of Law and Economics 45, no. S2, Part 2 (2002): 614-642.
[47] Harry Nelson, “FDA advised to license three anti-HIV agents,” Lancet 356, no. 8986 (1995): 1358.
[48] Alicia Ault Barnett, “Protease inhibitors fly through FDA,” Lancet 347, no. 9002 (1996): 678.
[49] “Overview of HIV Treatments,” HIV/AIDS Basics.
[50] “HIV Surveillance — United States, 1981-2008,” Centers for Disease Control and Prevention Morbidity and Mortality Weekly Report 60, no. 21 (2011): 689.
[51] Kaiser Family Foundation, HIV/AIDS at 30: A Public Opinion Perspective, 2011. Available online: http://kff.org/report-section/hivaids-at-30-section-1 (accessed November 1, 2014).
[52] Ibid.
[53] Ibid.
[54] The United States President’s Emergency Plan for AIDS Relief, The Power of Partnerships: The President’s Emergency Plan for AIDS Relief, Third Annual Report to Congress, 2007. Available online: http://www.pepfar.gov/press/c21604.htm (accessed October 25, 2014).
[55] “About CHAI,” Clinton Health Access Initiative, http://www.clintonhealthaccess.org/about (accessed October 25, 2014).
[56] “Increasing Access to Medicines and Diagnostics,” Clinton Health Access Initiative, http://www.clintonhealthaccess.org/program-areas/access-to-medicines/meds-and-diagnostics (accessed October 31, 2014).