A new era in HIV reporting will soon begin. Dr. Eric Whitaker, director of the Illinois Department of Public Health ( IDPH ) , announced at last week's statewide HIV/STD Conference that Illinois will begin tracking HIV cases by name rather than alpha-numeric code beginning January 2006. The development has occurred in response to increasing federal pressure to bring its HIV surveillance system in line with those operating in most of the other states.
According to the Web site StateHealthFacts.org, 38 states currently have name-based reporting; seven states ( including California and Massachusetts ) as well as the District of Columbia have code-based reporting; and five states have name-to-code-based reporting.
( Name-to-code-based reporting is an HIV surveillance technique where cases are initially reported by name, but are converted to code after public health follow-up and collection of pertinent data. )
The Centers for Disease Control and Prevention ( CDC ) is pressuring all states to adopt name-based HIV reporting, which it considers a more accurate and consistent collection method, according to an IDPH press release.
Despite a strong recommendation to accept non-name-based information by the Institute of Medicine in a 2003 report, the CDC has not integrated data from the non-name-based states into its national HIV projections. The agency claims it cannot compare code-based data against name-based data reported from other states. However, the release noted that no state provides names to the CDC; name-based records are converted to codes before being sent to CDC headquarters in Atlanta.
With the monumental switch come questions about confidentiality. Currently, healthcare personnel report HIV-positive test results to the state anonymously by using a unique patient code identifier. 'This has been a long-standing debate within the medical community and HIV/AIDS groups about using name-based reporting versus patient coding and we will make sure that security is of the utmost importance,' Whitaker stated .
AIDS advocates fear that even by switching to name-based reporting, states like Illinois will be financially penalized for not having data sets that are not as complete as states with long-standing name-based systems. Activists are urging Congress to remedy this treatment when it considers the Ryan White CARE Act re-authorization legislation.
The AIDS Foundation of Chicago ( AFC ) Web site states that cases that meet the medical definition of AIDS have been reported by name to IDPH since the early 1980s. Under this new rule, HIV cases will also be reported by name.
'External pressure'
AIDS-related organizations and healthcare professionals generally see the transition as somewhat of a necessary evil. For example, despite its long-standing championing of non-name-based reporting, AFC supports IDPH's decision for the sake of maintaining the integrity of HIV care, prevention and housing systems across the state.
David Munar of the AFC commented to Windy City Times that his organization had actually been contesting the change for quite some time. 'We have been fighting the battle against name-based reporting for about a decade,' he said. 'In 1998, John Lumpkin [ who was with IPDH ] introduced a new rule shifting Illinois to name-based reporting—and we were quite concerned then. AFC and other groups were concerned not only about confidentiality but also about the chilling effect it could have on testing.'
Regarding privacy, Munar noted that 'we have been assured by [ the IDPH ] that they're going to do everything they can to protect the information that's collected and to give people the highest standard of confidentiality.' However, he still recognizes that the shift is seismic.
Munar added that the change is the result of what he called 'external pressure.' 'We're supporting the state's decision because Illinois is between a rock and a hard place,' he said. 'The federal government is forcing Illinois to move to name-based HIV reporting or risk losing millions of dollars for essential AIDS services. Given that situation, we believe that it's in the best interest of those with HIV to shift to name-based reporting and preserve the integrity of our very fragile system. An advocate in Philadelphia referred to the shift as 'a bad idea whose time has come'—and I empathize with that ... .'
Munar said that although 'the battle is over,' it is important that people do not shy away from testing. 'We're working to make sure that we do all we can to protect confidentiality and promote access to testing and care services because those have been the issues all along. We want to make sure that no one is discouraged from seeking testing or care.' He also talked about a crucial component that he hopes will compel people to get tested: 'People will still be able to access completely anonymous HIV testing. We think that it's essential to retain that as we head to name-based reporting.'
Dr. David Blatt's assessment of the genesis of the transition mirrored Munar's. 'The problem was that federal funding was going to be cut off, so—given the choice of losing the funding or going ahead with the name-based system—I think the right decision was made,' he said. Blatt added that he is concerned about confidentiality: 'The situation is worrisome because of this untrustworthy federal bureaucracy. Traditionally, I haven't had problems [ with privacy issues ] . However, the problem is the direction of the federal bureaucracy; a lot of very good people in all parts of the government are leaving because they're so appalled by this administration.'
Dr. Leigh Roberts, medical director of Howard Brown Health Center, also felt that the transition will be 'unfortunate.' She added that the change 'is not necessary from a medical perspective but, in terms of funding, it's going to be necessary. So much of the services we provide are dependent on the Ryan White [ Act ] .' She expressed her hope that Illinois makes as seamless a transition as possible; for her, that shift includes a lack of compromise regarding privacy.
Roberts also said that some people 'will be impacted by the change. As a provider, I can only encourage people to get tested and get the care they need. But I know that some people will respond by shying away from services they need—but that would be true no matter what services they needed.'
The sentiment against name-based reporting is also shared outside of Illinois. Paul Feldman, public affairs director of the New Silver Spring, Maryland-based National Association of People with AIDS ( NAPWA ) , criticized name-based reporting: 'The notion that name-based reporting will provide better data is just fallacious. There is nothing to indicate that the quality of data from states that have been using coded identifiers is any poorer or different from those with name-based reporting.' However, NAPWA is not in favor of code-based reporting, either. 'The more important issue, however, is that 'sero-surveys' [ which involves testing large numbers of blood samples ( usually collected for another purpose ) for HIV to determine the rate of seropositivity in the population ] are not being used,' Feldman stated. 'We're relying on HIV-positive results from people who choose to get tested. [ Instead, ] we could do a much better job of finding out the prevalence of HIV in various U.S. populations by doing blinded sero studies [ instead of HIV reporting ] —and we don't do that.'
[Further conversation with Feldman makes clear that the NAPWA is not opposed to code-based reporting but that neither code-based or name-based reporting of those who are tested provide good data about the extent of HIV compared to what could be learned from appropriately-designed sero-surveys. See the NAPWA\\\'s full statement on the matter at http://napwa.org/TerjeCDC.htm]
Task force
IDPH has amassed a 19-member special task force to review surveillance procedures and strengthen confidentiality protections.
Committee members include Whitaker, lawmakers, HIV-positive individuals, public health specialists and HIV/AIDS community groups from around the state. The task force conducted its first meeting Oct. 21 in Springfield. 'We met to discuss the shift in reporting, to review its internal processes on how it deals with HIV surveillance and to make recommendations on how to improve the process,' Munar confirmed. 'We had a very lengthy discussion about all of these issues, including [ the topic of ] federal advocacy that has to continue; even with the move to name-based reporting, Illinois could be disadvantaged [ regarding ] future funding. The state is moving towards this transition in a very deliberate fashion.'
Blatt felt that the formation of the task force is 'crucial' in terms of confidentiality. Roberts concurred, adding that 'it will work hard to assure folks that due diligence is being done.'
AFC's Web site contains information on HIV/AIDS surveillance as well as a set of frequently asked questions to educate about important issues. People can access this information and a petition to Congress on HIV surveillance at www.aidschicago.org .
