David Zilberman
An Examination of the multiple types of HIV Screening, and the benefits of Mandatory screening over other testing methods
Fear, ignorance, intolerance towards gays, and loathing for drug-users created a powerful sense of stigma associated with individuals that were afflicted with the Human Immunodeficiency Virus (HIV) that ultimately causes the Acquired Immune Deficiency Syndrome (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 was called “God’s scourge” against homosexuals and intravenous drug-users. These types of descriptions only fueled the negative treatment and resentment that already existed towards AIDS afflicted individuals by simple-minded 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 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 the midst of the battle against AIDS, some of the best protocols and laws that were adapted were directly based on their first-hand experience of treating infected patients.
Screening for HIV is a multifaceted issue that must be carefully examined from many aspects. There are ethical, legal, and socio-economic concerns that must be considered while determining the benefits of HIV testing. Each of these aspects substantially affects people’s lives and their ability to fight this deadly disease. In this paper I will argue that HIV screening presents great benefits for at-risk individuals as well as the population at-large. In addition, I will give real life examples of routine screening, and volunteer screening. These types of screenings and their effectiveness in reducing HIV transmission rates will be compared with the effectiveness of mandatory screening in curbing HIV transmission rates. The first aspect of mandatory HIV screening that will be reviewed is the vertical transmission of HIV from mothers to their unborn infant. Next, the relationship between developed and developing countries and their combined efforts to combat the AIDS epidemic will be looked upon. In addition, the treatment of prisoners and the type of access the holding facilities offer the infected inmates will be examined. Another, aspect regarding HIV screening that will be discussed is the role of ethicists and legislators, who draft the required laws and protocols to handle both legal and ethical issues that deal with AIDS afflicted people and their legal rights. Lastly, the important role played by advocacy groups and their valuable contribution in the fight against AIDS will be examined.
HIV/AIDS continuously presented new and sometimes overwhelming challenges to the valiant community of warriors who tirelessly battled the AIDS epidemic. One of the most devastating effects of HIV is the vertical transmission of the HIV-infected pregnant mothers to their unborn infants. In 1993, fourteen percent of all new reported AIDS cases occurred in women; this showed a steady increase in the AIDS cases among women. It is important to point out that most pregnant women with HIV have been infected through heterosexual intercourse rather than intravenous drug use. The spike in heterosexual transmission of HIV has been evident in the southern United States. Some mathematical models suggested that if the levels of maternal infection reach two to three percent, the vertical transmission of the virus could become the leading cause of death among children (Lovorn 415-418).
The mandatory screening for HIV coupled together with counseling and follow-up care for both mother and the newborn offer a great combination in fight against the disease, especially prevention for unborn infants. A good example of a success story is the existence of mandatory provisions of healthcare in all fifty states that require age-appropriate immunization for enrollment in school. However, no similar laws exist for children less than two years of age despite recommendations made by the U.S. Public Health Service Advisory Committee of the American Academy of Pediatrics.
An analysis of clinical trials conducted in 1994 by the Data Safety and Monitoring Board of the AIDS Clinical Trials Group, (AICTG), concluded that administration of medicine called zidovudine for the prevention of maternal-fetal transmission demonstrated enough evidence to recommend the usage of the medicine in the general population (Flowers 50). This was a significant breakthrough in the fight not only to decrease and stop the AIDS epidemic, but in this case to actually have the ability to prevent the spread of the HIV in infants. This would allow the number of unborn children to have a chance at a normal life without having to fight against the deadly disease.
This clinical trial was conducted in thirty five various sites and was sponsored by the National Institutes of Allergy and Infectious Diseases, fifteen sites were sponsored by the National Institutes of Child Health and Human Development, and nine sites were in France. The main focus of the clinical study was to compare the administration of a placebo pill with the effects of the zidovudine and the appearance of any adverse effects. The actual daily regimen included zidovudine that was given to the mother both antepartum and intrapartum as well as to the newborn during the first six weeks of life. At the conclusion of this clinical trial it was determined that chemoprophylaxis can significantly reduce perinatal HIV transmission. This crucial conclusion leads to the urgent need for prenatal HIV screening of pregnant women. The therapy can only be offered to those individuals who submitted to HIV screening and tested as HIV-positive. As a result of the mandatory screening and free follow up HIV care, the vertical transmission rate, in this group of women, went from twenty percent to two percent (Lovorn 403).
The basis of the success of this clinical trial was not only a no-cost administration of zidovudine, but also mandatory screening. When, the women participated in this trial, they all were screened for HIV. This process allowed the women to be identified as HIV positive and take zidovudine, which ultimately curbed the number of infants afflicted with AIDS. In effect, mandatory screening led to an outstanding overall decrease in vertical transmission from mother to infant. It is important to underline that the expense of administering, counseling, and follow-up care, would be significantly cost-effective if compared to the cost of caring for an HIV infected infant who would develop AIDS. Prenatal testing that can offer prophylaxis for PCP must be done in the first months of infant’s life. This type of screening would lead not only to the decrease in the numbers of the infected infants, but also allow the health-care providers the opportunity to administer much needed care that could result in full recovery of some of the infants and prevent deaths of some( Lovorn 402-413).
The effects of HIV and AIDS were not only limited to the United States. Many countries abroad were heavily affected by the disease, and showed tremendous death rates in their populations. As a result of the effects of HIV in the USA, and in developing countries, many clinical trials were conducted 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 nations 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/AIDS entered into a second decade of its 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 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.
The phase III trials allowed researches to administer experimental drugs and record the results of these trials. The results of these trials helped to define the daily regimen for HIV positive individuals. The new data was a determining factor in policy formulation by developing nations in their fight against AIDS. Governments of many developing countries such as Brazil made a decision to institute routine HIV testing coupled with free follow-up care for HIV-positive individuals as their best chance to drastically reduce the fatalities in their population.
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 (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). The government of Brazil made a bold and costly decision to promote routine HIV screening for all at-risk HIV individuals along with free follow-up medical care for anyone tested HIV-positive. This approach drastically reduced the numbers of Brazilians who developed AIDS. Over time HIV-positive individuals were able to take the daily regimen of medicines and control the symptoms of the HIV infection.
The results of the routine testing showed a dramatic decrease in overall death rate due to AIDS in the Brazilian population (Serovich 104-108). With such successful results, one may wonder if the institution of mandatory screening is next. If the government of Brazil instituted mandatory HIV screening, then no doubt more lives would have been saved. On the other hand, mandatory screening can be seen as an infringement on civil liberties/freedoms. It is obvious that many people would not opt to get tested for HIV due to its associated stigma. Thus, some people may have lost their lives to AIDS. When looking at the numbers, it is evident that mandatory screening is more effective than routine screening in preventing HIV transmission. The overall death rate of Brazilians due to AIDS decreased approximately seven percent. This number is an approximation because routine testing does not account for the entire Brazilian population at large. This type of testing was given yearly during a patient’s visit to a doctor’s office. Many Brazilians did not have a primary care physician, so were not able to access routine HIV screening. Also, many Brazilians did not want to get screened for HIV because of the negative connotations associated with the virus. Mandatory screening of pregnant women showed a ninety percent decrease in vertical transmission rates. Will the government of Brazil move from a policy offering routine testing coupled with follow up care to a policy that mandates screening?
Conflicting opinions exist regarding the conduct of phase III trials on humans. The proponents of this approach insist that these trials were a great success and yielded a much needed formula of anti-retro viral treatment (ART) used to combat the development of AIDS in HIV-positive individuals. The opponents argue that medical research conducted with the help of HIV-infected humans as its subjects is inappropriate, unethical and is not justified by the achieved results. I believe that the need to conduct phase III trials and the possibility of establishing a clear daily regimen for the afflicted individual clearly outweighs the ethical issues of conducting medical clinical trials with the use of HIV-positive humans as its subjects. It is because of the success of these trials that the researchers were able to demonstrate the success of the formula for daily regimen of the ART used to combat the development of AIDS in HIV-positive individuals. This success makes the idea of mandatory screening for HIV amongst “at-risk” patients more compelling by offering the HIV-positive individuals follow-up care that would ultimately suppress the development of AIDS and save more lives.
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. 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 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 HIV screening. This is an example of voluntary screening because it was up to the patient’s discretion as to whether or not to be screened for HIV (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.
The existence of a coherent policy made tremendous difference for HIV-infected individuals in custody of various state prisons. Prison administrators were able to follow a set of determined rules and were able to decrease the mortality rate of the afflicted prisoners. At the same time the spread of virus amongst the prison population was reduced as well. The only caveat in this situation is that voluntary screening is not bullet proof. Since it is on a volunteer basis, many people would not choose to get screened for HIV due to the stigma associated with the virus. As a result, many people who actually were afflicted with the disease were not treated for it. In several state prisons, an overall decrease in about five percent of AIDS related deaths was observed due to the institution of voluntary screening. This percentage is only a rough estimate because it only deals with the known number of patients who have HIV; in reality this number is probably much smaller.
When compared with mandatory screening, voluntary screening is not nearly effective in preventing HIV related deaths. In the case of the pregnant women being studied for vertical transmission rate, the HIV transmission rate decreased about ninety percent. However, the HIV transmission rate amongst state prisoners, who were allowed to opt-in/opt-out of HIV screening, fell a very rough five percent. Thus, we can only see a sixteen -fold difference rate in the effectiveness of mandatory screening when compared to volunteer screening.
The effects of 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 policies 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).
One of the unique issues about 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. The greatest benefit of mandatory HIV screening is the ability to deliver preventative treatment that will save patient’s lives by preventing the development of AIDS. Also, HIV positive individuals usually behave responsibly and take safety measures that will prevent the further spread of the virus.
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. One example of this type of legislation is the Health Insurance Portability Accountability Act (HIPAA) enacted by President Bill Clinton in 1996. This legislation spells out the guidelines of how to handle patient’s medical records by anyone who comes in contact with this information. A set of regulations was created that dealt specifically with AIDS related patients. 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. By preventing discrimination against HIV-positive people, HIPPA alleviates fears of many people from getting screened against HIV. This fact alone may cause people to become more proactive in terms of their status. They may communicate more openly with their loved ones and sex partners. This open type of communication may reduce the rate of transmission of HIV (Flowers, 45-60). On the other hand, some people would keep the results private from their family and life-partners. Others would disclose the results of the test in their attempt to seek support from life-partners and family members. Many HIV-positive individuals exhibit behavior that many experts describe as the “fear of knowing”. These people are overwhelmed by the results and engage in precarious behavior, such as unprotected sex (Flowers, 50-55). This example clearly underlines the type of conflict that many ethicists have to grapple with: an individual’s right to privacy versus an individual’s right to know his/her partner’s HIV status.
As the governmental agencies were struggling to establish coherent policies and guidelines, it was the valor performance of volunteer advocacy 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 decision of both GMHC and Project Inform to advocate for HIV-screening for at-risk individuals encouraged many people to take the test and receive the follow-up care. As the result, many individuals who were diagnosed as HIV-positive received the available medical treatment and prevented further spread of the virus.
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).
As we enter another decade of AIDS’s existence in our world, we can review the original attitude and reaction towards the disease and victims that were swept away during the initial wave and the progress that has been made since. Everyone is well aware that the stigma associated with AIDS and HIV infected individuals still exists, but definitely not nearly at the same levels that existed in the early days of the epidemic. It is because of selfless efforts of our scientific community and healthcare providers that presently HIV positive individuals can live longer and productive lives and receive reasonably priced therapy that curtails the devastating effects of AIDS and complications that accompany this deadly disease.
At first, the therapy that offered any hope to prevent HIV positive patients from contracting AIDS was costly and complicated. The daily dose consisted of a very strict regimen that demanded precise timing and numerous pills. Over time the therapy delivery was greatly improved and simplified. Infected individuals can easily manage daily routine and lead normal lives for many years after being diagnosed as HIV positive. However, this achievement is only made possible if HIV screening is made mandatory. Mandatory screening is the most effective method in preventing HIV infection because of the large decrease in transmission rates. Out of the three types of screening examined, mandatory screening was the only one that provided an accurate percentage of people afflicted with the disease, and it showed a ninety percent decrease in vertical transmission rate. Voluntary screening and routine screening, both do not give an accurate estimated in the overall percentage of people afflicted with AIDS. Also, both of these methods show only a slight decrease in overall HIV transmission rates.
People of all ethnicities, sex, gender, and sexual orientation must get screened for HIV to test for the presence of the virus. Once tested, these individuals should immediately start the available therapy, if necessary. Once identified as HIV positive, individuals must “do the right thing” and notify their sexual partners. At the same time, HIV positive persons must take all pre-cautionary steps suggested by health-care providers that will help curb the spread of the HIV virus to other individuals. The distribution of the results of the HIV screening must be conducted with the utmost respect for individual’s right to privacy. It is in that individual’s best interest to notify their family members and sex partners about the results of the test. Many social workers and health-care providers believe that sharing the results with loved-ones will help gain the much needed moral support during this difficult time. This important aspect will drive most scrupulous individuals to conduct themselves appropriately when faced with decision about disclosing the results of the HIV screening.
We can only hope that with a 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.
I believe that the tremendous gains in the fight against AIDS that were made in the recent years will contribute positively in the way individuals approach and make decisions related to their personal conduct when faced with that dilemma.
Bibliography
Bayer, R: Private Acts, Social Consequences (New Brunswick, NJ: Rutgers University Press)
Bloom, David E. and Glied ,Sherry
Science , New Series, Vol. 252, No. 5014 (Jun. 28, 1991), pp. 1798-1804
Colgrove, James Keith. Epidemic City: The Politics of Public Health in New York. New York City: Russell Sage Foundation, 2011. Print.
Enel ,P., Charrel, J., Larher, M.P., Reviron, D., Manuel, C. and San Marco, J.L.
European Journal of Epidemiology , Vol. 7, No. 2 (Mar., 1991), pp. 147-150
Flowers, Paul and Church, Stephanie
Culture, Health & Sexuality , Vol. 4, No. 1 (Jan. – Mar., 2002), pp. 43-65
Guenter, Dale , Esparza ,Jose and Macklin,Ruth
Journal of Medical Ethics , Vol. 26, No. 1 (Feb., 2000), pp. 37-43
Jennings, M., Kent and Andersen, Ellen Ann
Political Behavior , Vol. 25, No. 2 (Jun., 2003), pp. 177-199
Johnson, Albert R., and Jeff Stryker, eds. The Social Impact of AIDS in the United States. Washington D.C.: National Academy of Sciences, 1993. Print.
Lovvorn, Amy E. Quinn, Sandra Crouse and Jolly, David H.
Journal of Public Health Policy , Vol. 18, No. 4 (1997), pp. 401-432
McDonald, Douglas ,C.
Crime and Justice , Vol. 26, Prisons (1999), pp. 427-478
Mueller, Ruth Dixon
Studies in Family Planning , Vol. 38, No. 4, Ethical Issues in Reproductive Health (Dec., 2007), pp. 284-296
Murphy, Timothy F. Ehics in an Epidemic AIDS, Morality, and Culture. Los Angeles: University of California, 1994. Print.
Polonsky, Sara, Kerr, Sandra, Harris, Benita, Gaiter, Juarlyn, Fichtner, Ronald, R. and Kennedy, May G.
Public Health Reports (1974-) , Vol. 109, No. 5 (Sep. – Oct., 1994), pp. 615-625
Odunsi ,Babafemi
Studies in Family Planning , Vol. 38, No. 4, Ethical Issues in Reproductive Health (Dec., 2007), pp. 297-306
Santopoalo, Tina
Journal of Community Health Nursing , Vol. 6, No. 4 (1989), pp. 231-244
Serovich, Julianne, M., Greene, Kathryn and Parrott, Roxanne
Family Relations , Vol. 41, No. 1 (Jan., 1992), pp. 104-109
Spaulding, Anne, Stephenson, Becky, Macalino, Grace, Ruby, William, Clarke, Jennifer, G. and Flanigan, Timothy, P.
Clinical Infectious Diseases , Vol. 35, No. 3 (Aug. 1, 2002), pp. 305-312
Venters, Homer D. McNeely, Jennifer and Keller, Allen S.
Health and Human Rights , Vol. 11, No. 2 (2009), pp. 89-100
Weijer, Charles
Journal of Medical Ethics , Vol. 25, No. 1 (Feb., 1999), pp. 31-36
Wilfert, Catherine M.
Clinical Infectious Diseases , Vol. 19, No. 4 (Oct., 1994), pp. 664-666
