HIV Reporting Requirements to Determine Research Proposal

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The SBOH seems set to proceed with mandatory HIV reporting by name. That alternative is presently used by 30 other states. It is presently used by Washington for the other 52 infectious diseases with mandatory reporting. In that regard, it is an easy option to implement. Moreover, because name reporting is done already with AIDS, there is little room to justify different treatment for HIV than is already being given the full-blown version of the disease. There are concerns about privacy, given that unlike AIDS patients, HIV patients can live for decades. Reporting by name would have implementation issues for doctors and would give Public Health the most accurate and timely information possible to help them combat the spread of the disease. The privacy concerns stem largely from a distrust within the most afflicted communities of authorities, in particular the state government. There is the possibility that a significant portion of patients would avoid seeking medical care if they were to be reported by name, and that this would counteract any gains made by getting Public Health the best and most timely information. Moreover, some of these constituents may avoid anonymous testing, since members of the public are not seen to differentiate between losing their anonymity at one stage of the process or another.

Mandatory reporting by UI has the advantage of building an extra layer of privacy into the system. It better meets the needs of patients and advocacy groups. The groups in particular feel that it would remove some of the distrust in the community, since their views would finally be taken seriously by health authorities. However, UI has several drawbacks. First, it will be difficult to implement. Doctors are unlikely to respond favorably to the additional paperwork and may ultimately balk at doing it. This has proven the case in Maryland, a state that uses UI reporting. The other state that uses UI reporting, Texas, has deemed it a failure and is moving towards name reporting. However, other states are moving in the other direction, towards UI reporting. But there remains risk in that no state has successfully implemented UI reporting. Further, there are questions surrounding the code itself. Proponents view it as being an extra layer of security, and not easily cracked. Others believe it is fairly easy to crack, and is not as strong a safeguard as the present system already offers, with the information being held on a non-networked computer with tightly controlled access.

To oppose mandatory reporting altogether is another option, though not an enticing one. It works against Public Health in terms of controlling the spread of HIV / AIDS, in that they would have to rely on information either from their own AIDS figures or data from other jurisdictions. Further, there is no strong support for opposing mandatory reporting. The Northwest AIDS Foundation does not oppose mandatory reporting, and the CDC is undertaking a program that may demand it. So there is little traction for this alternative.

Letting the State Board of Health decide the issue is plausible, given that they appear set to do so. To not provide them with a recommendation could be seen as tantamount to an abstention. However, in representing the county with the highest number of AIDS/HIV patients, KCBOH is a source of valued knowledge and a key influencer of policy. Moreover, if KCBOH did have anything close to a presentable opinion on the issue, they would have a duty to the public they represent to make the SBOH aware of that opinion.

The divisiveness of the issue invites further study. At the last meeting, the questions about the issue ranged from neophyte to in-depth, indicating that there is a still a degree of misunderstanding regarding the issue.

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There has been very little information presented. For the 30 states that have implemented name reporting, some would have faced the same issues that KCBOH is currently facing, and a few of these must have studied the issue. There should be more information available. However, the State is meeting later this month to decide the issue. Moreover, they seem keen to push the issue through quickly. The process involves a public hearing phase, but if the state wishes to expedite the issue they may hold the hearing in December when the majority of the public is distracted with holiday matters. It is unlikely that KCBOH can gather sufficient information before the state's next meeting.

Evaluation Criteria

The issue needs to be weighed with the objective of maximizing the public health benefit. The strongest course of action will be the one that helps stop the spread of HIV / AIDS. All parties, no matter their viewpoint on the best way to achieve that goal, see it as the primary objective of this exercise. Supporting this will be building trust with the vulnerable groups and protecting privacy. Ease of implementation will be considered to the extent that it affects the ability to stop the spread. Cost is not a major criteria - even the most expensive option (UI) costs almost nothing relative to the costs associated with the HIV / AIDS epidemic. The State's views are not considered relevant - they are asking us for our views. What they choose to do with those views is ultimately their decision.

Recommendations

The alternative that best satisfies the needs of Public Health is name reporting. They have demonstrated that their efforts to stop the spread of HIV / AIDS will be best served with an easy, rapid flow of information. We recognize the risk that some patients will avoid care due to privacy issues but we have little more than anecdotal evidence with which to gauge that potentiality. Indeed, even the Northwest AIDS Foundation admitted only 10% out of 28% of patients who delayed seeking treatment did so because of privacy issues, which indicates that a further 18% had other reasons, and perhaps those reasons should be looked at first.

The concerns about privacy with name reporting are not unfounded. However, the benefits of UI reporting in terms of privacy are overstated. Code can be cracked, information can be leaked, and ultimately HIV patients will develop AIDS and be subject to name reporting anyway. Concerns about government misuse of the information are unfounded based on historical precedent. Concerns about future misuse are highly speculative in nature.

The ease of implementation is of concern because evidence from Maryland shows that more HIV cases go unreported due to the cumbersome nature of UI reporting than we would be sacrificing due to privacy issues. No matter what system we choose, we need the support of the medical practitioners, and there is reason to believe we would not receive adequate support for a UI system.

Based on the above evaluation, we should proceed with recommendation of an HIV name reporting system. We should also work with Northwest AIDS Foundation to help build trust back into the community. Though the Foundation has framed the debate as taking their side being essential to rebuilding trust with the AIDS community, we feel that the mistrust is overstated, and that trust can be built in many different ways. We should focus significant effort in the coming months to rebuilding whatever trust we can with the most vulnerable communities, be it terms of explaining the system better or strengthening privacy protections.

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