HIV Reporting Requirements
To determine whether or not support mandatory HIV reporting and, if so, what manner of reporting to support.
The King County Board of Health has been asked to weigh in on the issue of mandatory HIV reporting. The two mains forms of reporting are by name, and by unique identity (UI), which is a random code. The former allows for rapid flow of information that Public Health can use to help stem the spread of HIV / AIDS, but at the perceived expense of anonymity. There is the risk that by removing anonymity from the system, many patients will avoid treatment. However, a UI system would be more difficult to implement, and lack of support amongst doctors might result in a greater number of patients' data going unreported. We should recommend name reporting, due to concerns about the effectiveness of UI in protecting privacy, of being implemented successfully and regarding the delays it adds to the transfer of quality information to Public Health.
Problem Statement: The State Board of Health will be meeting this month in order to determine the best way to approach the issue of HIV reporting. They voted this past week to pursue at this meeting regulations outlining a statewide approach to standard confidential reporting of HIV patients to Public Health. They voted 7-0 in favor, with 2 abstentions, to pursue confidential reporting with names. The State Board of Health has asked for a position statement from the King County Board of Health, and that this be prepared and submitted in time for their November meeting. The King County Health Department would like KCBOH to support mandatory HIV reporting.
For its part, the King County Board of Health has held a pair of meetings this fall regarding this issue. The KCBOH has delayed taking a position on the issue until more information can be gathered and evaluated. It is the purpose of this paper to help outline the issues surrounding HIV reporting and issue a recommendation to bring to the November KCBOH meeting.
Infectious disease control is the purview of Public Health and they have mandatory confidential reporting for 52 infectious diseases at present, including AIDS. The SBOH wishes to add HIV to this list for a number of reasons. Among the most important is the need to gain control of the AIDS epidemic. HIV treatments in recent years have made the time gap between HIV infection and the development of full-blown AIDS significantly longer in the past, even decades. At present, Public Health only has the means to track AIDS cases, but not HIV. Research has shown that HIV is most transmittable during the first few months post-infection and Public Health believes that gaining knowledge of spread patterns during these months is key to controlling the spread of HIV / AIDS.
At present, all infectious diseases require mandatory confidential reporting and this is done by name. Under normal circumstances, the decision to add HIV to the list of reportable infectious diseases would be fairly routine. However, this issue has become politically volatile for a couple of reasons. Within the AIDS community, there is vocal and emotional opposition to mandatory HIV reporting, and to reporting by name in particular. Some of the most visible constituents within the AIDS community distrust Public Health and feel that reporting by name opens up the possibility for discrimination, either if the list is leaked or if a right-wing government takes power in Olympia. The climate for HIV patients, homosexuals and drug users in King County may be relatively tolerant, but the state east of the Cascades is predominantly right-wing and this feeds a level of distrust when it comes to putting a list of HIV patients potentially in the hands of state officials.
The ultimate concern is to find the best means for Public Health to do its job in stopping the spread of HIV / AIDS. Each different group of stakeholders has a different take on what this best means might be. Activist groups feel that distrust of Public Health could result in 10% of patients avoiding seeking treatment. Other studies put this figure closer to 2%, still others indicate 0% avoidance for this reason. The activists are likely in the best position to determine the most accurate figure, as they deal with HIV / AIDS victims that Public Health and doctors don't know about. At the core of the issue is to best weigh patient's privacy with the needs of public health.
The main stakeholders are Public Health, AIDS/HIV patients, the doctors, the groups that work with AIDS/HIV patients, and the KCBOH itself. The role of Public Health as pertaining to HIV is to contain the spread of infectious diseases. They approach this task through several means, including prevention awareness and treatment planning. They feel that the information gathered through mandatory reporting will be invaluable in tracking the spread of HIV, allowing them to better target their prevention awareness campaigns. They feel that because of the long delay between HIV contraction and the onset of AIDS the information they gather from AIDS patients is coming to them too late. Moreover, they feel that because the virus is at its most communicable in the months immediately subsequent to contraction, that unique identifiers (UI) will delay the flow of information, causing undue risk to their efforts. In addition, they feel that no reporting, or even UI reporting, will inhibit their ability to perform follow-up communications with physicians and patients alike.
The strongest opposition comes from the groups that work with AIDS/HIV patients, such as the Northwest AIDS Foundation. These groups feel that the communities that suffer the most from the AIDS epidemic - homosexual and bisexual men and intravenous drug users - are already among society's most stigmatized groups. This group does not oppose AIDS reporting so vigorously because the disease, once manifested, is typically fatal within 18 months. HIV carries the same stigma as AIDS, but with the new treatments a person can live potentially for decades after contracting HIV. These people would run the risk of public exposure of their condition, and therefore the argument is that even if reporting was made mandatory, it should be done anonymously, using UIs, rather than confidentially using names. The Northwest AIDS Foundation believes that a lack of anonymity in the system will discourage some members of the most vulnerable groups from seeking medical help, knowing that they will then be "in the system."
Advocacy groups believe many members of the most vulnerable communities have an inherent distrust of the medical establishment, and that this has been reinforced in recent years by certain pieces of attempted legislation that called into question the state's ability to keep lists of HIV patients strictly within the Public Health community.
HIV patients themselves are a group distinct from their advocates. The advocates' concerns are broad-based, whereas individual patients each have their own specific experience as they move through the system. The specific concerns for a given patient will vary, but among them will be the need for privacy and the need to get adequate and appropriate treatment. Whereas the advocacy groups deal with aggregate concerns, patients are individuals suffering from a medical condition, and desire to be afforded the full compassion and respect the system can.
Doctors represent another group, as they are affected by both the decision to report and by the method of reporting. They bear some public health responsibilities, but by and large their concerns are with regards to the implementation of reporting. The Washington State Medical Association (WSMA) has taken the position that UI reporting would be needlessly burdensome. For one, they do not share the distrust that some of the advocacy groups feel, citing a perfect track record of maintaining confidentiality of lists of patients for the other 52 reportable infectious diseases. In addition, they are concerned that to implement another system for one extra disease adds significantly to the workload of doctors and lab technicians, while adding no value.
The King County Board of Health has been asked to weigh in on the issue. As the most populous county in the state, and the one with the most AIDS patients, their view can potentially carry weight with the State Board of Health. The SBOH may well have made up their minds on the issue - and they appear to be planning to push their policy through the system quickly - but they have nonetheless asked KCBOH to lend its viewpoint to the debate. The KCBOH knows that it needs to help control the spread of HIV / AIDS, but there is legitimate concern than mandatory reporting by name will result in a significant number of HIV patients avoiding care because of distrust of Public Health.
There are five main alternatives to be evaluated. They are to recommend mandatory HIV reporting by name; to recommend mandatory HIV reporting by UI; to oppose mandatory HIV reporting altogether; to avoid making any decision and leave it to the…