Disclosure_and_Reporting_of_Hiv_Serostatus_

With human immunodeficiency virus prevalence increasing, we have a pandemic on our hands that beckons us with decision-making to alter the way we approach public health. On a community level, we are faced with the battle between the right to privacy and the right to information (Vorster, 2003). Although there is a thin line between protecting public health and protecting privacy, HIV disclosure should remain private and not be forced. Laws help to guide moral behavior and should guide the infected individual. They should also be set up to protect the un-infected public, but do so without infringing upon privacy and autonomy. The history of HIV disclosure has a rocky past, as the discovery of HIV/AIDS began within marginalized populations. Gay men and African American people experienced infection in the highest numbers than any other social groups. Every state by 1983 began to report the names of people infected with AIDS, made available for health professionals and special interest groups. UNAIDS, which is the Joint United Nations Programme on HIV/AIDS, is setting a goal to establish a better HIV surveillance system to monitor the spread and concentration of the virus. They proposed that the used of names should be an option, but strict and enforceable regimes of confidentiality must be in place for security (UNAIDS, 2000). At first, I wondered exactly how much information the physician shares when he/she files a report. A named report includes the infected patient's demographic information, the name of the physician or laboratory that diagnosed the patient, the patient's risk history, the laboratory's analysis, the patient's clinical status, and any referrals for treatment or services given to the patient. A patient’s identifying information is removed from the report once the state health department processes the file. The health department then reports to the Center for Disease Control with the numerical “Soundex” code that is assigned to a particular patient. All protected health information has its limits at the state and local level with this method of reporting (Moayery, 2001). Name reporting advocates argue that reporting names assures that patients with HIV and AIDS will receive better counseling and education. They mention that those that are responsible for surveillance could better execute their tasks and partners could be notified. Another argument is that patients will receive notification when new therapeutic agents became available. All aspects of reporting an infectious disease applied to the concept of HIV serostatus with the argument of promoting name reporting in a medical and public health setting. “But crucial as the respect for medical confidentiality is, it has never been viewed as an absolute (UNAIDS, 2000).” Working in the health field, there are limitations as to how private a health record is. Sharing information in passing may never be a privacy violation if the patient does not find out. The opponents for a reporting system for HIV serostatus are advocates of people living with HIV infection, gay organizations, and some public health officials. Public sharing of HIV status would make people less willing to come forth and receive testing for the virus. As this is the antithesis of what public health is all about, the Global Programme on AIDS released a report discussing the fate of HIV name reporting assuring that it would never reach the national level (UNAIDS, 2000). There is paranoia associated with protected health information stored at a state level. Many people that have knowledge of name based reporting share the fear of that information being leaked into the public. Since the commencement of name-based reporting of HIV/AIDS, there has been one situation where a list of names was leaked to the public (Moayery, 2001). In my opinion, one leak is one too many. In other countries, name registries exist for the sole purpose of promoting public health surveillance. There are only a couple of provinces in Canada that do not use name reporting in tracking the incidence and prevalence of this disease. Other countries in Europe have mixed opinions. The Europe Centre for Epidemiological Monitoring of AIDS stated that countries with a reporting system should adhere to the policy and countries that do not yet have a system should develop one. They emphasize that confidentiality must be ensured, as well as the elimination of the duplication of reports. They also feel that HIV reports should be linkable with AIDS reports (UNAIDS, 2000). The ideas promoted by countries that support a name reporting system are not well adopted by other countries for reasons that uniquely exist. Thailand is a good example of how reporting names can go wrong. Upon the discovery of HIV/AIDS, the country immediately developed a public registry of patients with an infectious disease so that patients could receive education and follow-up. Because they lacked similar privacy policies on a national level, many people were exposed as carriers to the public. A home-visiting public health team often demarked the individual with infection to local neighbors. At medical offices, patients’ files were marked with highly visible, large, red symbols to note that the patient has HIV or AIDS. The patients were required to have red waste containers in their rooms, which was another signal to the public that the individual was infected (UNAIDS, 2000). Now this is not a solid argument for why the United States should not develop a national name reporting system for people with HIV, but this goes to show that there is some element of the unknown for how information sharing can go wrong. As of today, Thailand has an unlinked anonymous serosurveillance system. They found that as HIV diagnoses increased, there was no possible treatment and no possible way to afford the lengthy follow-up process for every patient. They now view nominal notification as both ineffective and unnecessary, saying that this system breeds the discrimination and stigmatization that people with HIV/AIDS face. Many other countries have an anonymous serosurveillance system because this system is really all that is needed to track the spread of infection. Spain uses a 15-digit code reporting and has a stance that focuses most on preserving human rights and privacy. They stated that confidentiality could be harmed and that using names is arbitrary to epidemiological knowledge about the infection (UNAIDS, 2000). In the United States, we protect the right of privacy for patients in our hospitals. Health care workers are not able to knowingly seek out the serostatus of a patient unless it directly affects his/her health. The worker may only get such information from the patient’s physician if he/she has been dangerously exposed to a patient’s bodily fluids, such as a needle-stick. If the patient does not know his/her serostatus, the physician can order a blood test to protect the health care worker after exposure. If the patient does not consent, the blood test will still be performed, but the serostatus is not communicated to the patient and does not go on record. If a health care worker discloses any information about serostatus without the consent of the patient and goes against statuary procedure, that worker is guilty of a misdemeanor with punishments of up to one year in a county jail or fines up to $10,000 (ALRP, 2004). This goes to show how important serostatus can be in the legal realm. In 2008, every state in the United States finally developed and implemented a name-based HIV infection reporting system. Some states implemented a name reporting years before the official commencement. The main argument in focusing on name-base reporting relied on the fact that highly active anti-retroviral treatments are keeping HIV infected people healthier and alive longer (CDC, 2008). Emphasis is not as strong on AIDS, and HIV name reporting is now essential to tracking infection and prevention methods (UNAIDS, 2000). Although statuatory name reporting is in effect in this country, it goes against human rights and privacy. We could gain just as much surveillance on the incidence and prevalence of this disease with code identifiers. A national named HIV reporting system is still on the horizon for the United States; one that would match the AIDS registry. Arguers for this national system believe that this is the best way to reduce HIV and AIDS incidence and prevalence. One subsidiary of a national registry that I completely disagree with is the partner-notification program. This program would contact any and all previous reported partners of the newly diagnosed individual and insist that they be tested for HIV. If the patient listed incomplete of inaccurate data regarding previous partners, a public health official would follow-up with the patient until he/she releases that information (Moayery, 2001). The first national standard at protecting health information and medical records was the Health Insurance Portability and Accountability Act of 1996. In this federal statute, the discussion of disclosure leaves plenty of access to medical records if there is a concern towards public health. The Privacy Rule within this work allows the release of medical information should the provider see purpose for preventing or controlling a disease (Pottker-Fishel, 2007). Another national statute that relates directly to HIV and AIDS is the Ryan White Comprehensive AIDS Resource Emergency Act of 1990, or the CARE Act. This legislation is aimed at providing access to HIV/AIDS health care for low-income and uninsured families. In the language provided, there is a drive only to fund state programs that make a “good faith” effort to notify the spouses of HIV infected individuals (Pottker-Fishel, 2007). The two federal statues that are listed here only brush upon the subject of disclosure, which means that the majority of that policy-making lies within the states. In an article written by Timothy F. Murphy (2009), he discusses current law in the state of Illinois that relates physician disclosure to HIV. Physicians have a privilege, but not a duty, to inform a spouse about the other half’s HIV diagnosis. This is only in the event that the patient is encouraged to tell his/her partner and fails to do so. The physician might feel that the relationship is in jeopardy and then choose not to tell the partner anyhow. There are no ramifications should the physician decide not to tell the partner, and for if the physician discloses without just cause (Murphy, 2009). Under Illinois law, physician disclosure has a bit of a restricted umbrella. The physician can only disclose HIV status to married partners. Illinois continues to prohibit same-sex marriage, which means this type of partner disclosure does not apply to same-sex partners (Murphy, 2009). Murphy (2009) argues that Illinois should include all sexual and needle-sharing partners to the disclosure list, as this would help to slow the incidence of HIV infection. He even goes further to say states should adopt a policy that allows physicians to disclose a patient’s HIV diagnosis to all endangered third parties. Current, twenty-four states have laws against any HIV-positive person engaging in sexual activity without disclosing their infection status to the other person. Michigan is included in this effort to help reduce incidence, going as far as making any type of sexual contact illegal without serostatus disclosure. California law is the most lax by only including unprotected anal and vaginal intercourse, under the stipulation that the participant intends to infect his/her partner. It seems that in California, anybody could argue that he/she did not intend to spread the virus and get away with it. Studies show that states with flexible laws are more effective at reducing HIV exposure than states with strict laws. Flexible laws offer lawful choices in how to approach sexual activity and do not force behavioral changes in an infected individual. Flexible laws allow intimacy and trust to develop incrementally by making sexual contact before disclosure an option (Gallertly and Pinkerton, 2008). Flexible laws do have a flaw in protecting the autonomy of the partner of a possibly infected person. With strict laws, the partner will be notified before any sexual contact; whereas, flexible laws only warrant disclosure before undergoing the riskiest sexual behavior. This means that the partner has less autonomy to decide how much risk they are willing to forgo with an infected person. The sense of autonomy that flexible laws press to promote involves partners actively seeking HIV serostatus affirmatively (Gallertly and Pinkerton, 2008). Even though one could argue that the right to autonomy should not be affected by law, flexible laws provide more efficacy against the spread of HIV and make for better legislation. Placing responsibility upon people to openly disclose serostatus to his/her partner is how our laws should be sculpted, while protecting false disclosure with laws. As with any ideology that relies with honesty, there are going to be people that falsify serostatus because they are hiding the truth or simply do not know. In a study done on college students, 5% of heterosexual students involved in the study reported a negative serostatus to their partner without ever having a test performed. The thought behind this type of disclosure suggests that motivation is sexual coercion (Marelich & Clark, 2004). This is an obvious concern in regards to the spread of HIV, but this does not imply negative connotations to flexible HIV disclosure laws. In doing research, it seems that the problem with HIV does not lie solely within the disease, but greatly within humanity. We look at the virus as a plague and stigmatize those that are infected. J. Vorster (2003) discusses the position that researchers Parnett and Jackson have on HIV as a chronic disease and nothing more. When identifying HIV as another social problem, reduction of discrimination against HIV patients and the violation of their human rights occurs, and we can curb the strong reaction against discrimination in the form of a radical protection of the rights of the individual. Sufferers of malaria and tuberculosis are subject to disease notification to help track the incidence and prevalence of both diseases, so why should HIV be any different (Vorster, 2003)' Vorster’s argument places the health of communities over the rights of the individual. The truth of the matter is that HIV is a unique virus due to history and perception. As mentioned before, marginalized communities were the most affected by the discovery of the virus. HIV/AIDS quickly became known as the gay disease and helped foster ideas that there was finally a punishment for sexual immorality. Such bad undertones still carry over today with some lack of understanding with the virus and stigmatization for those that have it (Vorster, 2003). The analogy of comparing name-based HIV reporting to malaria or tuberculosis does not rein parallel because of the historical epidemiology of HIV and the negative views that the majority of America has with people that carry the virus. Another issue arises when considering the extent of disclosure for HIV serostatus: the mother-child relationship. This is another classic example of the “need to know” versus the patient’s privacy. While the mother has her right to privacy and right to be free from stigmatization, she also must consider the health of her unborn child. In some cases, the mother could be HIV-positive and take the option of starting Zidovudine treatment in the best interest of her child (Vorster, 2003). While this teeters on a completely new topic, this carries the tone of the right to disclosure while preserving public health. For Thailand, official discussed making a name-based system for HIV notification to protect newborns and pregnant women. The goal of this initiative is to reduce mother to child transmission of HIV through the same Zidovudine regime that I discussed earlier. This type of reporting is based on seeking out those who need treatment, not just surveillance (UNAIDS, 2000). In cases of directly preventing HIV infection, this type of disclosure is worth the privacy that it infringes upon. Disclosure for the sake of surveillance appears to be nosey, while this type of reporting shows direct evidence of preserving health. The reporting of patient information for people infected with HIV has gone too far. A national registry of people living with HIV would be the last straw for protecting privacy within this community. Partner disclosures are better left up to the infected individual and should not be a decision that is mandated by the state. In the same respect, the state should uphold its ability to protect citizens against the spread of infection through laws that punish people who knowingly spread the virus. Newborns do not have choices in preventing HIV exposure, so laws should protect these developing individuals from mother-newborn spread of the virus.