In the beginning of the 1980’s HIV/AIDS made its way into the United States. From the start there has been a very negative and judgmental stigma attached to the name of HIV and AIDS. Before scientists and researchers understood what this illness was caused by, gay males were strongly discriminated against. This is because the condition was first discovered among gay communities throughout the world. Although the American society has become more socially aware and educated about the transmission of HIV and AIDS, there are still many ethical dilemmas and social issues arising out of this condition. One of the main problems that has become very apparent is discrimination. Discrimination alone has caused negative perceptions surrounding behaviors linked to HIV infection. Another recent bioethical issue concerning the topic of HIV/AIDS, is the disclosure and privacy of patients who undergo testing for HIV/AIDS. Just recently the United States and surrounding countries have created the same laws and regulations regarding reporting standards to collect HIV surveillance data. Lastly many patients who are currently living with HIV/AIDS have been dropped from their insurance, or have been told that certain parts of their medical expenses will not be covered, purely based off of the fact that they are living with a chronic condition.
There are many different aspects of discrimination when talking about HIV/AIDS patients. Discrimination enters into every layer of a person living with HIV/AIDS. Throughout the United States alone, people who are living with this condition have been fired from their jobs, evicted from their homes, refused health insurance, kicked out of schools, and denied social services. Even though there is solid evidence that HIV cannot be transmitted just by being around an individual living with this condition, many people are still not educated as to how HIV is transmitted. “Debbie’s 8-year-old foster son Michael was born HIV positive. He was placed in a school in a small village in the south-west and everything was fine until someone broke confidentiality. This caused such panic and hostility that they were forced to move out of the area. A local mother screamed at them in the street to keep Michael away from her children, shouting that he should have been “put down” at birth.” (NAT, 2012) The story mentioned above is not uncommon, and raises the question; Is it ethical to treat someone who is living with HIV/ AIDS differently than any other person? The negative perceptions that have been created of people living with HIV/AIDS can strongly affect they way a person lives their life, which in turn affects the way our society as a whole functions. The example above demonstrates a little boy being uprooted from his life purely based off of misconstrued perceptions about a condition.
‘Negative Attitudes and Perceived Acts of Discrimination Towards People Living with HIV/AIDS,’ a study done throughout five different countries, which have been severely affected by HIV/AIDS, proves and helps demonstrate the causes of negative perceptions and social stigma towards this virus/ disease. “Never talking about HIV/AIDS was associated with higher perceived discrimination compared to those who had ever talked about HIV/AIDS.”(Genberg, 2009) This study touches on many aspects that cause discrimination throughout our daily lives, but are not very apparent. A higher prevalence of HIV was found have reduced the negative attitudes towards these conditions. It was found that communities, who openly and informally talked about HIV and AIDS, and their surrounding issues, reduced negative social stigmas. These communities who had open communication reported a very high reduction of risky behaviors, and hate crimes. Overall, this study made the point that areas with higher levels of discrimination were observed to have the least amount of education, support and necessary medical care for HIV/AIDS patients. (Genberg, 2009)
Until just recently, HIV testing did not have universal laws and regulations. Each state had some form of a different data collection method, which skewed data results, and made testing very unappealing. “As of April 2008, all 50 states, the District of Columbia, and 6 dependent areas—American Samoa, Guam, the Northern Mariana Islands, Palau, Puerto Rico, and the U.S. Virgin Islands—used the same confidential name-based reporting standards to collect HIV surveillance data.”(CDC, 2011) The new confidential name-based reporting standards have become very controversial, due to the fact that an individual who is living with HIV does not have to disclose information to the people involved in their lives, if they do not choose to. An exception to the confidentiality law is that medical professionals are duty bound to report HIV infections and AIDS to public health authorities. In this situation it was ruled that health care providers who were living with HIV/AIDS being required to report any diagnosis had much stronger benefits that outweighed the risks. The new testing laws and regulations give patients who are being tested a newfound sense of security, due to the extensive pretest consent counseling. “The informed consent process, including information about the nature of the test, the nature of the illness caused by HIV, risk behaviors and prevention measures, the confidentiality of test results, reporting requirements and other circumstances under which test results may be disclosed, the voluntary nature of the test, the ability to withdraw consent, and the availability of anonymous testing.”(Wolf, 2001)
Overall the new laws and regulations regarding the consent to release testing information has helped in reducing discrimination towards HIV/AIDS positive individuals. However, the confidentiality has caused some worry due to the fact that certain professions and behaviors can increase the risk of transmission, without the knowledge of the individual being exposed. With these laws put in place, in most circumstances the individual who has tested positive is responsible for informing the people who would be at risk of contracting HIV from him or her. However if a physician believes that a positive patient has irresponsible and negative intentions, then they can legally release the positive individual’s results to those who could potentially be at risk. This has been seen negatively by society as a whole, because of how loosely the regulations for releasing an individual’s information without consent, are written.
Another ethical concern dealing with HIV testing is the mother to child transmission, which is very preventable if the mother is aware that she is living with HIV, and is willing to take an antiretroviral therapy to reduce her baby’s exposure during delivery. “It was recommended that all pregnant women be tested for HIV as a routine part of prenatal care. Under its recommendations, women would be informed that an HIV test would be conducted, along with other prenatal blood tests, but would not be required to consent specifically to the HIV test.”(Wolf, 2001) This has caused a great debate, because of the perception that it is mandatory, when in fact it would be going against a constitutional right, and it is also unknown if making HIV tests mandatory would make any difference in the number of babies who are infected with HIV through their mothers. Critics worry that by making HIV testing a requirement for pregnant mothers, other issues would become more prevalent. “By foregoing opportunities for education and counseling, routine testing may undermine prevention efforts. Finally, routine HIV testing in the prenatal context may affect adherence to the norms of pretest counseling and informed consent for HIV testing in other contexts.”(Wolf, 2001)
Health insurance coverage for the HIV/AIDS population throughout the United States is proving to be a challenge. Many people living with HIV/AIDS have been dropped from their insurance, or are told that their insurance does not cover the very expensive antiretroviral cocktails required to reduce the progression of AIDS. The Affordable Care Act has helped address the quality of living for individuals who are living with HIV. “Beginning in 2014, insurers will not be allowed to deny coverage to anyone or impose annual limits on coverage. People with low and middle incomes will be eligible for tax subsidies that will help them buy coverage from new state health insurance Exchanges. As a result, a person living with HIV who meets this income threshold no longer has to wait for an AIDS diagnosis in order to become eligible for Medicaid.”(AIDS, 2011) This Act will help decrease the number of people who don’t have insurance as a whole, and will allow people who are living with HIV/AIDS to receive fair and necessary medical treatment.
Overall the discrimination and privacy issues concerned with HIV patients are starting to be recognized, and change is starting to be put in place. With such a lethal virus, there will always be somewhat of a negative social stigma, but with societal awareness, and understanding how discrimination can cause an individual along with a society to crumble. By becoming more aware of what HIV and AIDS are, and getting the facts straight, we can prevent future cases of HIV from happening, but also make sure that the people who are living with HIV/AIDS are treated like human beings and are apart of our society.
References
Examples of HIV/AIDS Discrimination . (2003, February 3). National AIDS Trust. Retrieved March 11, 2012, from www.heart-intl.net/HEART/Stigma/Comp/AreadofHIVdiscrimination.pdf
Genberg, B. (2009, June 1). Negative Attitudes and Perceived Acts of Discrimination Towards People Living with HIV/AIDS . Social Science & Medicine . Retrieved March 12, 2012, from http://ezproxy.wou.edu:2072/Direct.asp?AccessToken=95JIJIQ8XPM4EDM94UIJE1J1MDQU8MX44D&Show=Object&msid=-419395770
HIV Infection Reporting | Statistics and Surveillance | Topics | CDC HIV/AIDS. (2011, December 13). Centers for Disease Control and Prevention. Retrieved March 12, 2012, from http://www.cdc.gov/hiv/topics/surveillance/reporting.htm
Health Care Reform and HIV/AIDS. (2011, January 14). AIDS.gov . Retrieved March 11, 2012, from http:/http://aids.gov/federal-resources/policies/health-care-reform/
Wolf, L. (2001, August 1). Ethical Dimensions of HIV/AIDS. HIV InSite Gateway to HIV and AIDS Knowledge. Retrieved March 12, 2012, from http://hivinsite.ucsf.edu/InSite?page=kb-08-01-05#S3.1X