AEGiS-BAYW: DPH commish tells Globe about HIV policy switch before alerting implementation team AAC may sue to stop names-reporting of HIV cases

Important note: Information in this article was accurate in 2006. The state of the art may have changed since the publication date.

DPH commish tells Globe about HIV policy switch before alerting implementation team AAC may sue to stop names-reporting of HIV cases

Bay Windows - April 27, 2006
Ethan Jacobs, ejacobs@baywindows.com

Bowing to financial pressure from the Centers for Disease Control and Prevention (CDC), the commissioner of the state Department of Public Health, Paul Cote, pulled the plug last week on a consultation process to evaluate the state's HIV surveillance program and made the decision to switch the state over to a system that records the names of all people who test positive for HIV. Since last fall the original implementation team that had helped develop the current surveillance program, which uses anonymous codes instead of names to label cases, had been meeting regularly, along with the Statewide Consumer Advisory Board and the Massachusetts HIV Prevention Planning Group, to look at the state's options in reporting HIV cases. But on April 21 members of the implementation team learned that the decision had been made for them by Cote when he told them in person at a meeting. The decision became public in a Boston Globe article two days later.

"He had already talked to the Globe before he met with us on Friday," said implementation team member Andrew Fullem, who is the director of the Center for HIV and AIDS at John Snow, Inc., a Boston-based organization that provides technical and managerial assistance to public health programs. "It's things like that, there's a lot of anger in the room that a collaborative process that the [DPH] AIDS Bureau and the surveillance laboratory had put together, [that] the commissioner just trumped it with seemingly no consideration of the process."

Fullem headed up DPH's HIV surveillance program for two years from 1999 through the end of 2000, when the current code-based system was first being used.

Kevin Cranston, director of DPH's HIV/AIDS Bureau, said Cote made the decision after it became clear that Massachusetts could lose millions in federal HIV/AIDS funding through the Ryan White Care Act. The CDC has pressured the 10 states using code-based surveillance systems to switch over to name based systems, and already this year three other states, California, Washington and Oregon, have also pledged to make the switch in the face of funding cuts. Bay Windows first reported that the state was examining its options with names-based reporting in February (see "Will Bay State Switch To Names Reporting of HIV Cases?", Feb. 9).

"Over the last two weeks the commissioner made this decision in response to communication that he had with our federal partners," said Cranston. He said one of the primary deciding factors was "the very real potential loss of federal funds through the Ryan White Care Act as it moves to incorporating HIV cases into its funding formula."

The funding formula for Ryan White has been the major source of leverage that the CDC has used to pressure states to switch to names-based HIV surveillance. Currently the Health Resources and Services Administration (HRSA) distributes funding to states through a formula using CDC data on AIDS cases in each state. Every state uses a names-based system for AIDS reporting, unlike for HIV. The current language of the Ryan White Care Act, last reauthorized in 2000, says that in fiscal year 2007, which begins this October, HRSA will begin incorporating HIV data from CDC into the funding formula. The CDC has never accepted HIV data from states using code-based surveillance, and the agency has warned code-based states that they could forfeit much of their Ryan White funding if they do not make the switch. In December 2005 CDC Director Julie Gerberding sent the governors of those states, including Massachusetts, a letter warning them about the change.

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

In an interview with Bay Windows in February Cranston estimated that the state could lose as much as $10 million if it does not make the switch. The Ryan White Care Act expired last September, and Congress has delayed reauthorizing it, but most believe that when it is reauthorized it will also include HIV data in its funding formula.

Cranston made it clear that although the state is making the switch to a code-based system, it does not accept CDC's argument that name-based systems are more effective or more accurate.

"We've had the best unique identifier system in the country. It has performed admirably according to all of the published criteria for quality... It is not the ideal circumstance under which to make a policy change, and it will involve a significant amount of work and investment of resources to make the conversion. Were it not for the clear signaling from our federal partners and the possibility of a loss of funds we would likely be continuing with the current system," said Cranston.

Gerberding's letter claimed that code-based systems prevented states from doing deduplication, a process for ensuring that the same case does not get counted in more than one state. Yet Cranston said the information that goes into the codes for each case allows Massachusetts to do deduplication with the present system.

Fullem said members of the implementation team had major reservations not only about Cote sidestepping the consultation process but also about the substance of the decision itself. He said many were concerned that a system that records the names of people testing positive for HIV could discourage people from getting tested, particularly populations like immigrants, both legal and illegal, who may fear the repercussions if their HIV status becomes public or falls into the hands of other federal or state agencies.

"One of their overwhelming fears is that their HIV status will be reported to INS [Immigration and Naturalization Service], and they won't come in because they're afraid they'll be reported and deported," said Fullem.

AIDS Action Committee (AAC) shares Fullem's concerns and has been a vocal critic of the state's decision to change its surveillance system. AAC Director of Public Policy and Legal Affairs Denise McWilliams said that in addition to immigrants AAC worries that closeted men who have sex with men, IV drug users and other populations that may be most at risk for infection will be afraid to get tested.

McWilliams also said AAC is considering legal action to block the change. She said details about a potential suit are still being worked out, but she believes CDC is overstepping its role in threatening states with loss of funding.

"I think by requiring a switch to a name-based system they've gone outside of what the law envisioned," said McWilliams.

AAC has also questioned DPH's ability to maintain the confidentiality of HIV surveillance data. At the April 22 Bayard Rustin Community Breakfast AAC executive director Rebecca Haag told attendees during her speech not to believe DPH's claims that it can keep the data secure.

"If The Boston Globe can distribute 250,000 names and bank information about their customers, I would defy anyone in federal or state government to convince me or any of you that they're capable of keeping names-based HIV reporting confidential," said Haag. "Don't believe them if they tell you they can."

Cranston said he has every confidence that the data collected by the new name-based system, which is expected to be up and running by October, will remain secure and confidential. The state has used names-based surveillance for AIDS cases since the beginning of the epidemic and never had a breach in confidentiality. The HIV data, like the AIDS data, will be stored on a non-networked computer without Internet access in a locked room at the state's surveillance lab, and only a small number of epidemiologists have access to the room. None of the names are ever reported to any other branch of DPH or any other state or federal agency. All of the epidemiologists working with the data sign yearly confidentiality agreements.

"There's never been a nonconsensual release of any surveillance data at the individual level, and we're the oldest health department in the country," said Cranston.

Cranston also said the state will continue to operate testing sites where individuals concerned about confidentiality can get tested anonymously. He cautioned that if they test positively and enter medical care, their provider will be required to report their case to the state. The new system is expected to go into effect this October, and Cranston said DPH hopes members of the implementation team will be willing to work with DPH to help work out the logistics of the switch.

Yet Fullem said he and other members of the team have reservations about working with DPH. They fear that DPH will be willing to give concessions to the CDC if the federal agency again threatens federal funding. Some members, Fullem included, asked Cote at the April 21 meeting for a written commitment that DPH would not provide the CDC with the names and addresses of people living with HIV, but he said Cote declined. A spokesperson for DPH did not respond to calls asking about whether Cote would make such a pledge.

"At what point do our public health officials say, there's a line we don't cross, that the federal government doesn't need the names of people with HIV, and we will find alternate sources of funding for these programs rather than taking money from the federal government?" Fullem asked.

While the CDC has made no formal request for the names of people testing positive for HIV, it has taken steps to collect more personal information about people accessing HIV/AIDS services. AIDS advocates criticized the CDC's proposal for prevention workers using federal funds to use a data collection system called Program Evaluation and Monitoring System (PEMS) that would collect personal information, including names, addresses, and sexual history, for people accessing certain HIV-related prevention services. The outcry prompted CDC to issue a letter last month putting a moratorium on providers using PEMS until at least October, but advocates worry that CDC is moving towards collecting more personal information about people accessing HIV/AIDS services.

McWilliams also said she has little confidence that the DPH will stand up to federal pressure if there is a push for states to turn over more information to the federal government.

"I don't have a whole lot of confidence that if the feds said your funding is contingent on your forwarding the names to the CDC that this department of public health would say, no, we're not going to do that," said McWilliams.

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