Bay Windows - February 9, 2006
Ethan Jacobs, ejacobs@baywindows.com

Last year, the CDC stepped up pressure on states with code-based tracking systems for HIV cases to switch to name-based reporting. In the last month alone, California, Oregon and Washington have announced that they will switch to name-based reporting. If Massachusetts does not make the switch, the state could lose up to $10 million in Ryan White Care Act funding next year, said Kevin Cranston, director of DPH's HIV/AIDS Bureau. Cranston said DPH has launched a consultation process, working with the implementation team that originally guided the development of the current surveillance system as well as the Statewide Consumer Advisory Board and the Massachusetts HIV Prevention Planning Group to determine what course of action the state should take.

"These groups are still examining the information received from CDC, weighing a set of options, and have yet to make a specific recommendation to the state. In the meantime the unique identifier [code] system used to collect HIV data remains intact," said Cranston. "I would expect the implementation team and the other bodies to make a specific recommendation by this spring."

AIDS advocates are divided over whether the state should switch to name-based reporting. Denise McWilliams, the AIDS Action Committee's (AAC) director of public policy and legal affairs, said the organization is opposed to changing over to the name-based system. She said AAC believes people will be less likely to get tested if they know the state maintains a database of the names of all people who test positive.

McWilliams cited the National HIV Behavior Surveillance study released by the CDC last summer that showed that in a survey of gay and bi men in five cities nearly 50 percent of black men surveyed were HIV positive, and two-thirds of those men were unaware of their status until they participated in the study. Of the men who did not initially know their HIV status, 35 percent said they did not get tested because they were afraid someone would discover their status. McWilliams said those numbers suggest that confidentiality remains a major concern for people considering getting tested.

The code-based system was originally adopted in large part to address concerns that recording the names of people living with HIV could make them targets for discrimination if the names were leaked. While reports of confidentiality breaches have been rare, the name-based system is not perfect. One year ago an official at the Florida health department accidentally sent the names and addresses of thousands of people who had HIV/AIDS to more than 800 county health department employees, according to press reports. The health department successfully contained and deleted nearly all copies of the e-mail and prevented the information from going public.

Dr. Steven Boswell, President and CEO of Fenway Community Health, said that while the CDC should take pains to address concerns about confidentiality, he believes that normalizing the treatment of HIV could help lessen some of the stigma around the disease.

"There's several of us who do this kind of work who are cautiously supportive of the notion of moving forward with names-based reporting... [There has been] a gradual sense of confidence that this disease can be dealt with using longstanding public health approaches and that the concerns we had initially around discrimination, while they haven't gone away entirely, certainly are lessened than what they were 15 or 20 years ago," said Boswell.

He said he has not seen research showing that names-based reporting would dissuade people from getting tested, and he pointed out that in all 50 states AIDS diagnoses are monitored using a names-based reporting system. In Massachusetts names-based reporting of AIDS cases has gone on without major incident.

"To our knowledge there have been specifically with regard to reporting from the state no major snafus of reporting of AIDS cases," said Boswell.

He also said names-based reporting will give researchers a more complete picture of the epidemic across the country. "If you really want the gold standard in terms of tracking the epidemic and seeing what's happening, names-based reporting really is the gold standard," Boswell said.

Cranston said he believes the switch is unnecessary and said CDC is asking the state to scrap a surveillance system that performs at or above their own standards. CDC has argued that as a rule, name-based systems are more accurate and reliable than code-based systems, but it has done no specific evaluation of Massachusetts's system.

"We have performed an internal evaluation of our HIV system, according to the standards of quality that CDC outlined back in 1999, and we have met or exceeded every standard of completeness, timeliness and accuracy and in many cases outperformed some name-based states....We have offered to share these data with CDC on multiple occasions," said Cranston, who said that CDC has turned them down every time. "We feel the quality of the system should be the decisive factor."

It's unclear whether DPH has any leg to stand on if it wants to preserve the current system because CDC and the Health Resources and Services Administration (HRSA) control the purse strings for Ryan White. A provision in Congress's 2000 Ryan White reauthorization said that starting in 2007 HRSA would allocate funding using a formula that takes into account new HIV infections from each state. HRSA would be getting figures on state HIV cases from CDC, which has never accepted data from states with code-based systems. Advocates and health officials in many of the code-based states worry that when HRSA changes its funding formula they could see their funding cut unless they switch.

CDC Director Julie Gerberding validated those fears last December when she sent a letter to the governors of the 10 states that use some form of code-based reporting. She urged those governors, including Gov. Mitt Romney, to direct their health departments to begin the switch over to names-based reporting, and she said states that do not comply could risk losing their Ryan White funding.

"Data from non-name-based systems cannot be included in counts for the formulas. Therefore, states that use non-name-based systems are at risk for losing federal dollars," wrote Gerberding.

Prior to sending that letter Gerberding sent a letter to health departments using code-based systems saying that the CDC now "recommends" states make the switch, as opposed to in the past when the CDC merely "advised" states to make the change. Gerberding's two letters were seen as a sign that the CDC was going to crack down on states that did not change their surveillance programs.

Ben Klein, who heads up Gay and Lesbian Advocates and Defenders' (GLAD) AIDS Law Project, said GLAD is investigating whether there could be a viable legal challenge to block the CDC from mandating an end to the code-based system.

"That is a really important question that we are currently reviewing and looking at to make sure that we protect the right to confidentiality for people during increasing federal pressure [to switch to name-based reporting] and balancing the fact that we cannot afford to lose millions of dollars through Ryan White funds that provide basic services for HIV," said Klein.

Cranston said the loss of funding could be catastrophic for Massachusetts. "The Ryan White Care Act supports the HIV Drug Assistance Program [which provides HIV medication to people who cannot afford them], clinical care, case management, meals and transportation, and support services for people with HIV/AIDS. A significant loss of funds could have a devastating effect on the state's ability to sustain these programs," said Cranston.
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