Our view of HIV and AIDS has changed in the past few years. No longer do we consider HIV to be a virus with a dormant period that explodes into activity by attacking the immune system and signaling the development of full-blown AIDS. Today we're confident that HIV launches its attack from day one, and therefore requires quick and consistent medical care from the moment people discover that they are HIV+. In part because of this new view of HIV, and because of the dramatic decline in AIDS-related deaths over the past two years, the Centers for Disease Control and Prevention (CDC) has strongly recommended that all states begin to implement some mechanism for reporting and tracking HIV infections. Over the past several months, much of the country has been debating how best to accomplish this, through the use of coded information or through the creation of a name-based registry. That debate has finally come to Georgia, and will continue for the next several months.
It's important to note that Georgia does not currently track HIV infection. Information is collected on the numbers of positive test results given at various testing sites, and coded information is kept on individuals who access services funded through the Ryan White CARE Act. The state has also kept a name-based registry of people diagnosed with AIDS since the early days of the epidemic, and has name-based registries for some services such as the AIDS Drug Assistance Program. All of this information is kept extremely confidential, and to the best of my knowledge, there have never been any serious breeches of confidentiality in Georgia.
Our ability to direct prevention efforts and deliver services to overlooked communities depends upon the information that HIV reporting will provide us. However, in the rush to adopt a system of reporting, many people have assumed that a name-based reporting system is our only alternative. Because of this, I'm skeptical of how thoroughly the pros and cons of adopting a coded system using unique identifiers (UIs) have been reviewed.
Some of the comments I've heard recently make it sound as though anyone who supports UIs is a "fear mongering" conspiracy-theorist. However, if the officials who are making these decisions haven't given the same study into UIs that they have to name reporting, isn't the formation of their opinion just as short-sighted as that of the people whose position is dismissed as reactionary and uninformed? HIV reporting does not automatically equal name reporting, that's why many organizations from the National Association of People with AIDS and AIDS Action, to the ACLU and the Professional Practices Council of the American Academy of Physicians Assistants have endorsed the idea of HIV reporting using UIs as the only way to balance the need to privacy with the need to serve the interests of public health.
Currently two states have a UI system in place that could serve as a model for Georgia: Texas and Maryland. In Texas, the system has suffered from a lack of buy-in from both local health departments and private providers (they have argued that the creation of the UI using a combination of a partial social security number, date of birth, sex and race is too complicated and time consuming). Maryland, on the other hand, is very committed to its UI reporting system. They have experienced problems getting it off the ground, but they've stuck with it, and the results are beginning to pay off. By the third year of the system, 97% of all UIs submitted by testing sites and 84% of UIs submitted by providers were complete. We could learn from the mistakes of Maryland and Texas and create a system that doesn't take three years to straighten out. Many states such as Hawaii, New York, Pennsylvania, California and Massachusetts are studying how to create a UI-based reporting systems, therefore supporting the validity to this approach.
The biggest strength of UIs is that any list generated using this system is going to be more protective of an individual's privacy than a name-based approach. Although many people have argued that the era of discrimination and stigmatization of HIV has passed, it's important to point out that the Americans with Disabilities Act (ADA) is currently under attack on a national level in an effort to erode protections for people living with HIV, but who are not diagnosed with AIDS. Even if ADA protections are upheld by the courts, these protections have limits. There is also the reality that even with the strongest legal protections possible, those laws can always be changed by lawmakers. As one person recently put it, the safest list is the one that isn't created.
The issue of confidentiality is at the heart of most of the comments made by people against name-based reporting. Whether the fears of confidentiality breeches are well founded or not (and there is ample evidence on both sides of the issue), the fears are nonetheless real. If the fears of the community at large are dismissed as irrelevant, then public policy is being created in a vacuum. Such policy seldom serves the public good, and further deepens the mistrust of the government.
Reporting systems using UIs are one way of creating a reporting mechanism that can calm the fears of most people. Which phrase gives you more comfort?:
As someone who encourages people to overcome their mistrust of the health care system and become active partners in their care, I know which statement I would prefer to use when describing HIV reporting in Georgia.
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