Mandatory HIV Reporting: Name vs. Unique Identifier Policy

Introduction and Problem Statement

The King County Board of Health (KCBOH) has been asked to weigh in on the issue of mandatory HIV reporting. The two main forms of reporting are by name and by unique identifier (UI), which is a randomly generated code. Name reporting allows for a rapid flow of information that Public Health can use to help stem the spread of HIV/AIDS, but at the perceived expense of patient anonymity. There is a risk that by removing anonymity from the system, many patients will avoid seeking treatment. However, a UI system would be more difficult to implement, and a lack of support among doctors might result in a greater number of patients' data going unreported. This memo recommends name reporting, based on concerns about the effectiveness of UI in protecting privacy, the likelihood of successful implementation, and the delays UI reporting adds to the transfer of quality information to Public Health.

The State Board of Health will be meeting this month to determine the best approach to HIV reporting. They voted to pursue regulations outlining a statewide standard for confidential reporting of HIV patients to Public Health. They voted 7–0, with 2 abstentions, in favor of confidential reporting with names. The State Board of Health has asked for a position statement from the King County Board of Health, to be prepared and submitted in time for their November meeting. The King County Health Department would like KCBOH to support mandatory HIV reporting.

The King County Board of Health has held a pair of meetings this fall regarding this issue and has delayed taking a position until more information could be gathered and evaluated. It is the purpose of this paper to outline the issues surrounding HIV reporting and issue a recommendation for the November KCBOH meeting.

Infectious disease control is the purview of Public Health, which currently requires mandatory confidential reporting for 52 infectious diseases, including AIDS. The State Board of Health wishes to add HIV to this list for several reasons. Among the most important is the need to gain control of the AIDS epidemic. HIV treatments in recent years have significantly extended the gap between HIV infection and the development of full-blown AIDS — in some cases to decades. At present, Public Health has the means to track AIDS cases but not HIV. Research has shown that HIV is most transmittable during the first few months following infection, and Public Health believes that gaining knowledge of spread patterns during this period is key to controlling the spread of HIV/AIDS.

Under normal circumstances, the decision to add HIV to the list of reportable infectious diseases would be fairly routine, since all infectious diseases currently require mandatory confidential reporting by name. However, this issue has become politically volatile for a few reasons. Within the AIDS community, there is vocal and emotional opposition to mandatory HIV reporting, particularly reporting by name. Some of the most visible constituents within the AIDS community distrust Public Health and feel that name reporting opens up the possibility of discrimination — either through a list being leaked or through a change in political leadership. The climate for HIV patients, homosexuals, and drug users in King County may be relatively tolerant, but communities east of the Cascades are predominantly conservative, which feeds a degree of distrust when it comes to placing a list of HIV patients 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. Activist groups believe that distrust of Public Health could result in 10% of patients avoiding 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 patients that Public Health and physicians may never encounter. At the core of the issue is the challenge of weighing patient privacy against the needs of public health.

Stakeholders and Their Perspectives

The main stakeholders are Public Health, HIV/AIDS patients, physicians, advocacy groups that work with HIV/AIDS patients, and the KCBOH itself. Public Health's role is to contain the spread of infectious diseases through means including prevention awareness and treatment planning. Officials feel that information gathered through mandatory reporting will be invaluable in tracking the spread of HIV and allowing them to better target prevention campaigns. They argue that because of the long delay between HIV contraction and the onset of AIDS, information gathered from AIDS patients arrives too late to be maximally useful. Moreover, they contend that because the virus is most communicable in the months immediately following contraction, UI reporting would delay the flow of information and create undue risk. They also argue that UI reporting — or no reporting — would inhibit their ability to conduct follow-up communications with physicians and patients.

The strongest opposition comes from organizations that work directly with HIV/AIDS patients, such as the Northwest AIDS Foundation. These groups argue that the communities most affected by the AIDS epidemic — homosexual and bisexual men and intravenous drug users — are already among society's most stigmatized groups. They do not oppose AIDS reporting as vigorously because AIDS, once manifested, is typically fatal within 18 months. HIV carries the same stigma as AIDS, but with modern treatments a person can live potentially for decades after contracting HIV. These individuals face the long-term risk of public exposure of their condition, and therefore the argument is that even if reporting were made mandatory, it should be done anonymously using UIs rather than confidentially using names. The Northwest AIDS Foundation believes that a lack of anonymity will discourage members of the most vulnerable groups from seeking medical help, knowing they will be "in the system."

Advocacy groups also believe that many members of vulnerable communities have an inherent distrust of the medical establishment — a distrust reinforced in recent years by 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. Advocates address broad-based, aggregate concerns, whereas individual patients each have their own specific experience navigating the system. While the specific concerns of a given patient will vary, they typically include the need for privacy and the need for adequate, appropriate treatment. Patients are individuals suffering from a medical condition who deserve the full compassion and respect the system can provide.

Physicians represent another stakeholder group, as they are affected by both the decision to report and the method of reporting. They bear certain public health responsibilities, but their primary concerns relate to implementation. The Washington State Medical Association (WSMA) has taken the position that UI reporting would be needlessly burdensome. Physicians do not share the distrust that some advocacy groups feel, citing a perfect track record of maintaining confidentiality for the other 52 reportable infectious diseases. In addition, they are concerned that implementing a separate system for a single additional disease would significantly increase the workload of doctors and lab technicians while adding no practical value.

The King County Board of Health has been asked to weigh in as the most populous county in the state and the one with the highest number of AIDS patients. Its perspective can carry weight with the State Board of Health. The SBOH may have largely made up its mind, and appears to be planning to move its policy through the system quickly, but it has nonetheless solicited input from KCBOH. The KCBOH recognizes its duty to help control the spread of HIV/AIDS while acknowledging the legitimate concern that mandatory name reporting may result in a significant number of HIV patients avoiding care due to distrust of Public Health.

Policy Alternatives

There are five main alternatives to be evaluated: (1) recommend mandatory HIV reporting by name; (2) recommend mandatory HIV reporting by UI; (3) oppose mandatory HIV reporting altogether; (4) defer to the State Board of Health to decide the issue; or (5) study the issue further and provide a report at a later date.

The SBOH appears set to proceed with mandatory HIV reporting by name. That approach is currently used by 30 other states and is already used by Washington for the other 52 infectious diseases with mandatory reporting. In that regard, it is straightforward to implement. Moreover, because name reporting is already done for AIDS, there is little basis for treating HIV differently from the full-blown stage of the disease. Privacy concerns are real — unlike AIDS patients, HIV patients can live for decades — but Public Health gains the most accurate and timely information possible under this system. The privacy concerns stem largely from distrust of authorities, particularly the state government, within the communities most affected by the epidemic. There is a possibility that a significant portion of patients would avoid seeking medical care if reported by name, which could counteract gains from giving Public Health better information. Some constituents may also avoid anonymous testing, since many do not distinguish between losing their anonymity at one stage of the process versus another.

Mandatory reporting by unique identifier has the advantage of building an additional layer of privacy into the system and better meets the needs of patients and advocacy groups. These groups feel it would reduce distrust within the community, since their concerns would finally be taken seriously by health authorities. However, UI has several drawbacks. First, it is difficult to implement; physicians are unlikely to respond favorably to additional paperwork and may ultimately refuse to comply — as has been the case in Maryland, a state that uses UI reporting. The other state that has used UI reporting, Texas, has deemed it a failure and is moving toward name reporting. Some other states are moving in the opposite direction, toward UI reporting, but no state has yet successfully implemented it. There are also questions about the code itself. Proponents consider it a strong additional layer of security that is not easily cracked. Others believe it is relatively easy to crack and no stronger a safeguard than the current system, in which information is held on a non-networked computer with tightly controlled access.

Opposing mandatory reporting altogether is another option, though not an appealing one. It works against Public Health's mission of controlling the spread of HIV/AIDS, since officials would have to rely on figures from AIDS cases or data from other jurisdictions. There is also no strong support for this position — the Northwest AIDS Foundation does not oppose mandatory reporting, and the CDC is undertaking a program that may require it. This alternative has very little traction.

Deferring to the State Board of Health is plausible given that they appear set to decide the issue regardless. Not providing a recommendation could be interpreted as an abstention. However, as the representative body for the county with the highest number of HIV/AIDS patients, KCBOH is a source of valued knowledge and a key policy influencer. If KCBOH has formed any coherent opinion on the issue, it has a duty to the public it represents to make that opinion known to the SBOH.

The divisiveness of the issue invites further study. At the last meeting, questions ranged from introductory to in-depth, suggesting there remains a degree of misunderstanding about the issue. Very little information has been presented, and given that 30 states have already implemented name reporting, some must have studied the issue in depth and produced useful findings. However, the State is meeting this month, appears keen to move quickly, and may hold any required public hearings in December when much of the public is distracted by the holiday season. It is therefore unlikely that KCBOH can gather sufficient additional information before the state's next meeting.