David Zilberman
Fear, ignorance, intolerance towards gays, and loathing for drug-users created a powerful sense of stigma associated with individuals that were afflicted with the HIV virus that ultimately causes AIDS. Even now, more than three decades later since AIDS first topped the news, this same stigma is still considered to be the main reason how individuals, suffering with this disease, are treated in our society. During the first years of the AIDS pandemic, the disease has been called “God’s scourge” against homosexuals and intravenous drug-users. This description antagonized many people, who clung to the idea that only gays and drug-users should be afraid of this deadly ailment. These same people felt superior to the victims of AIDS and broadly advocated life-style changes for gays and cessation of drug-use for the addicts to ebb the advances of AIDS.
However, as we all know, AIDS slowly became a non-discriminatory disease. The myth that AIDS attacked only gays and drug-users was proven untrue soon after the pandemic started. As cases of heterosexuals being diagnosed with HIV virus surfaced, a sense of disbelief swept in, forcing many people to rethink their view and comprehension of AIDS. At the same time government agencies at the local, state, and Federal levels started to write legislation to handle the legal consequences of failing to offer appropriate HIV screening and follow up care. Since the healthcare workers were at midst of the battle against AIDS, some of the best protocols and laws came out based on their first-hand experience of treating infected patients.
The mandatory screening for HIV virus is a multifaceted issue that must be carefully examined from many aspects. There are ethical, legal, socio-economic concerns that must be considered while determining the benefits of mandatory HIV testing. Each of these aspects substantially affects people’s lives and their ability to fight this deadly disease.
The effects of the Acquired Immune Deficiency Syndrome (AIDS) are not limited to people who have been afflicted with this deadly disease. The fight against this disease is conducted by people responsible for formulating the policy in our health-care system. There are scientists who work tirelessly on the vaccine that would be successfully administered to prevent the spread of this disease (Santopoalo 233-242). The medical staff that delivers care to the afflicted individuals is on the front lines of the battle against this disease, and continuously provides invaluable information about the treatment and progress of the individuals entrusted to them(Santopoalo 233-240). Due to the stigma associated with this disease, many laws and protocols that have been created were based on the expertise, advice, and careful scrutiny of social and legal ethicists.
One of the unique issues about the Human Immunodeficiency Virus (HIV) infection is its ability to lay dormant in its host for many years before symptoms become visible. This particular attribute of the virus makes it that much more difficult to detect and ultimately offer follow-up care of the disease. Even more disturbing is that an infected individual would unknowingly infect other people during that period while the virus lives in the body without showing any symptoms.
These factors present valid arguments in favor of mandatory screening. On the opposing spectrum of this argument is the ethical idea of forcing any individual to participate in screening; especially in this instance where the consequences may include a very troubling, to say the least, outcome for the individual being tested. It is interesting to note that many ethicists who argue against mandatory screening also argue against an individual’s right not to notify their partners about the results of the test. They put forth the idea that by not informing one’s partners, it is ethically incorrect and even morally wrong to withhold that kind of information (Meuller 284-290). The conflict between an individual’s right to privacy and an individual’s right to know about a person’s HIV status comes to the center of the debate of mandatory testing and spills over into an area that addresses the dissipation of the results of the test (Meuller 285-288).
The stigma associated with this disease brought the creation of strict privacy laws that govern the disclosure and discussion of HIV test results with parties other than the tested individual. Health-care providers, insurance employees, and any other individuals that are somehow connected to the handling of any data related to HIV screening are strictly bound by existing legislation that dictates the correct protocol and procedure. Failure to follow these strict guidelines can result in heavy fines and penalties that can be directed not only at the individual employee, but also against the entity where the violation occurred.
These strict laws were designed to prevent discrimination against people who tested HIV positive. The laws mainly protect the individual’s right to privacy. Since people diagnosed with the HIV virus may continue to work and seek medical care, their rights must be protected to avoid the consequences of leaking or distributing their results publicly.
Unfortunately these rules are designed to protect only people who were screened for the HIV virus. Once that person obtains the results, there are no legal mechanisms to force that individual to disclose the results of the test to his/her current or future sex partners. Hopefully, scrupulous individuals who were tested positive would conduct their lives in a way to protect any possible spread of the virus (Flowers, 45-60). Unfortunately, most people would keep the results private and may be overwhelmed by the results that could lead to a precarious behavior. This pattern is what many experts call as “the fear of knowing” the results of the test and the heavy burden that positive-tested individuals must cope and live with for the rest of their lives (Flowers, 50-55).
The ethical issues surrounding AIDS testing affected not only HIV positive individuals but also played a significant role in formulating policies and protocols of clinical trials in the United States and abroad. The developing countries heavily depended on the research that was under way in the developed countries (Guenter 37-39). The underdeveloped nations hopes were to obtain a viable therapy for their HIV afflicted individuals, and of course all government and healthcare officials of the developing their sincerely hoped for a vaccine that would prevent further spread of this disease. This involuntary dependency between developing and developed nations facilitated the establishment of critically needed phase III trials of several therapies resulted from research performed in the developed countries (Guenter 40-43).
In the mid to late nineteen-nineties, the HIV virus and AIDS entered into a second decade of their existence. Developing countries saw dramatic consequences of the epidemic in their population. The international HIV vaccine research representatives from developed countries and developing nations met for series of consultations to address ethical challenges that confronted their research. These consultations started in September of 1997 in Geneva and the result of this study was presented in June of 1998. Brazil, Thailand, and Uganda represented the block of the developing countries (Odunsi, 297-304). These countries were selected because of their previous experience in HIV vaccine trials. The study defined key factors that are essential to conduct phase III trials. The first factor is that the vaccine is expected to be effective against the HIV virus in the area of the host country. The second factor is that the host country has sufficient capability and infrastructure to conduct the proposed research. The third factor is the host country’s capability to conduct an ethical review. Finally the fourth factor is that all of the participants will be adequately protected from harm and exploitation.
It is because of full cooperation between developing and developed countries on the level of government and healthcare officials as well as key participation of ethic specialists that these clinical trials were conducted and over time produced the desired results (Serovich 104-108). Unfortunately as the first reliable therapy was created and proven to offer hope to afflicted individuals, the costs associated with that therapy were prohibitive for many developing countries.
The government of Brazil led an effort to curb the existing international patent laws to reduce enormous costs associated with the newly developed treatments. In 1997 Brazil passed a law that allowed domestic production of foreign products to be manufactured locally within three years of the original market date of the product. The international patent standard varied from 12 to 20 years of the wait period to allow the original manufacturer to recoup its investment by permitting a monopoly of a particular product (Bloom 1798-1800). This approach allowed Brazil to offer free universal daily regimen of anti-retro viral treatment (ART) to all Brazilian citizens diagnosed as HIV positive. This new policy of free universal coverage proved to be a success in Brazil. This program is considered by many world-renowned organizations as a model to be simulated and replicated by other developing nations in their fight against HIV/AIDS (Enel 147-150).
As the fight against AIDS entered another decade, we can only hope that with a successful creation of vaccine very soon, the entire debate of mandatory or voluntary HIV screening will be history. Our health-care providers will be able to offer and safely administer this vaccine. This milestone will result in a great victory against this deadly disease and offer hope to the future generations.
Unfortunately in our great democratic country many issues are disproportionately separated by socio-economic factors. The population that has a disadvantage of simply living in an area that lags behind the rest of the country from the socio-economic aspect is at risk for a multitude of malaise that affects the individuals that make up that population. Regrettably AIDS hit this particular portion of our society early and with grave results.
As the governmental agencies were struggling to establish coherent policies and guidelines, it was the valor performance of volunteer, community-based, and religious organizations that offered counseling and compassionate care to the initial wave of infected individuals. Cities with the largest gay population, like New York and San Francisco, already had well-established organizations that mobilized their resources to help victims. Both the Gay Men’s Health Crisis (GMHC) of New York and Project Inform of San Francisco became leaders in their communities in the fight against AIDS (Murphy 110-120). The stigma associated with people afflicted with AIDS and intolerance towards gays, were the main reasons that GMHC and Project Inform as gay-rights groups initially advocated against HIV screening, seeking to shelter and protect the victims of the AIDS epidemic. However, as the results of the clinical trials were published that showed the efficacy of early therapeutic intervention of the occurrence of Pneumocystis carinii pneumonia (PCP) in individuals that were asymptomatic, both organizations swiftly changed their position and started to encourage HIV screening for individuals who were in the risk category (Johnson 101-110).
The role of the faith-based organizations came into the picture only during the second decade of the AIDS epidemic. It is interesting to point out that many of these organizations offered care and counseling to the afflicted individuals even though originally their affiliated religious institutions, that often provided major financial support, spoke out against these same individuals and described them as sinners and derided them during their weekly sermons. These faith-based organizations established community clinics that provided a much-needed moral support, counseling and even limited care to the afflicted individuals (Jennings 177-185). Over time, religious institutions took a different position. Many churches took a leading role in offering free, community-based, educational programs about the AIDS epidemic that was within the limits of their doctrinal commitment of their own faith. The initial response of describing AIDS as punishment against homosexuals dwindled down as scientific research contradicted that notion. True to their beliefs in an individual’s right to privacy, these organizations took a very cautious stance on mandatory HIV screening (Wilfert 664-666).
As the AIDS epidemic was widening in our country during the mid-nineteen eighties, our judicial and legislative systems were conducting a “war on drugs”. As a direct result of the new policies that have been enacted to conduct a new campaign to curb drug use and drug distribution in our country, the correctional facilities on the state and federal level became overcrowded with non-violent offenders and many habitual drug users who were at a greater risk to contract the HIV virus. This sudden increase in the prisoner population brought an even greater strain to a barely existing medical care delivery system that was in the midst of attempting to come into compliance with the landmark 1976 US Supreme Court Decision (Estelle v. Gable) guaranteeing the right of incarcerated people to receive medical care (Spaudling 305-310).This decision imposed a time limit that forced the American prisons to come into compliance with this new law. Failure by any correctional facility to become compliant with the new law would result in suspension of receiving federal funds.
It is easy to understand that faced with this new threat most prison administrators were struggling to formulate a coherent policy that would help reduced the spread of HIV virus amongst the incarcerated individuals. However, state and local prison facilities are both subject to accreditation by the National Commission on Correctional Health Care (NCCHC). NCCHC is a non-profit organization that was established with the help of American Medical Association in the early nineteen seventies (Lovorn 401-420)This organization offers accreditation programs to correctional facilities recognized by the US Department of Health and Human Services. These facilities must establish appropriate policies to fall into compliance with the recommendations of NCCHC or may risk violations that could lead to penalties and lawsuits. Based on the guidelines distributed by NCCHC, HIV screening must be provided on voluntary basis, but follow up care must be made available for HIV positive individuals.
Over time, state prisons started to offer HIV screening and follow up care for HIV positive prisoners. Of course at first conflicting policies and restrictions that were enacted due to the special circumstances of incarcerated individuals carried challenges for prison administrators and state legislators. Over time and with better understanding of the disease the officials were able to establish appropriate mechanisms and policies to cope with these challenges. Prisoners are allowed an opt-out option that allows them not to participate in the mandatory HIV screening (McDonald 427-450). If a prisoner decides to take an HIV test, depending on the results, prison administration must provide the follow up care for that individual. Regulations and policies that govern segregation of HIV positive or AIDS infected prisoners from the rest of the prison population varies from state to state.
The situation is very different for detainees in custody of Immigration Customs Enforcement (ICE). The individuals held in detention at the facilities run by ICE or its sub-contractors, are governed as non-criminal detainees. The Department of Homeland Security ultimately formulates the health care policies that will be followed at these detention centers. These policies do not have the force of law and as a result many individuals do not receive the appropriate level of care (Polonsky 615-620). HIV screening in these centers can be described as random at best and HIV follow up care for HIV positive individuals is almost non-existent. There have been numerous cases recorded where detainees with obvious symptoms were denied any medical care and died while in custody at these detention facilities.
This is an egregious example where the federal government exerts its power and authority over state and local administrations by compelling them to follow the guidelines issued by the NCCHC to receive federal funds for their prisons and at the same time classifying ICE detainees in such a way that basically exempts ICE from following the same set of rules and procedures (Venters 89-95). Unfortunately, this power struggle between governmental entities ultimately affects real individuals. Most of ICE detainees have very little legal rights and suffer the most consequences of not having the appropriate level of HIV related screening or follow up care available.
Even in the midst of an epidemic that caused death to thousands of individuals amongst us, it is difficult to admit that at times these people were stigmatized and discriminated against. It is even more difficult to admit that many thought that the disease would be limited only to “those” individuals and everyone else would be fine. This type of attitude is not simply a result of socio-economic differences that exist in our country, it is immoral at least, and it is that type of indifference may cause deaths to fellow human beings (Weijer, 31-36).
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