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State's HIV list to require names

Officials promise confidentiality

Massachusetts public health authorities later this year will begin requiring that doctors report to the state the name of anyone testing positive for HIV.

The change, from the current system of using codes to identify cases, is part of a national campaign to more accurately chart the march of HIV so that prevention and treatment efforts are directed to communities where the need is greatest.

The state is promising to keep names confidential in secure computer files, but critics fear that the policy change will dissuade some people from getting tested for the virus, and they warn that no record system is foolproof.

The decision, reached quietly in recent weeks, emerges as federal health agencies increase pressure on states to adopt uniform HIV reporting standards, including the collection of names. The director of the US Centers for Disease Control and Prevention told state health officers nine months ago that ''it is critical that all areas move as quickly as possible" to report HIV diagnoses with names attached.

The stakes for failing to comply could be substantial: The federal government is expected to make federal aid for HIV-infected patients contingent on states mandating the reporting of names.

Massachusetts authorities acknowledge their decision to embrace names-based reporting was motivated largely by concerns about losing federal dollars. They estimate the state Department of Public Health could forfeit $9 million a year, and the Boston Public Health Commission could lose $6 million if the names of HIV-positive patients are not reported. That money is used for everything from medication to meals to home healthcare.

''Obviously, we want to be in compliance and not jeopardize any of our federal funding," Massachusetts Public Health Commissioner Paul Cote said last week.

But the shift also reflects the changing landscape of HIV in the United States.

Advocates of the policy maintain that the stigma attached to the virus has diminished and with it, patients' fears about testing, especially with the passage of laws to shield the HIV-positive from workplace and housing discrimination.

And proponents of names-based reporting said it's important to have a standard practice for tracking HIV cases rather than a patchwork of state-by-state policies -- for some of the same reasons the FBI requires uniform reporting of crime statistics. It allows for speedy recognition of problem areas and, by making data comparable among states, ensures that federal aid is distributed to states equitably.

''The epidemic has demonstrated the ability to move from one particular risk group to another pretty quickly," said Dr. Matthew McKenna, chief of the surveillance branch in the CDC's Division of HIV/AIDS Prevention. ''We're trying to break the stalemate with the number of infections we have in this country, and it's important we have information that is as timely and reliable as possible."

For more than a decade, the number of new HIV infections in the nation has remained stubbornly static at about 40,000 annually, and disease specialists are concerned that the virus is spreading with particular speed in the African-American community. In Massachusetts, about 24,000 people have HIV or AIDS.

The refined tracking system in Massachusetts, which authorities said they hope to have running by the fall, would maintain records about HIV cases within a closed computer network that would be inaccessible through the Internet. Entry would be so tightly limited that not even Cote could get in, the commissioner said.

When data on cases are sent to the CDC, names would be translated into a code used by all states, a process designed to protect confidentiality while helping federal specialists spot patients counted in multiple states.

Massachusetts already requires reporting by name for many other infectious diseases, such as syphilis and gonorrhea. In addition to name, other identifying information such as age and address, and factors that put patients at risk for contracting the illness, are typically included.

And that policy has applied to patients with full-blown AIDS since the early days of the epidemic in the 1980s -- but those who are infected with HIV and have yet to develop AIDS are the lone exception to names-based reporting. At one time, that was a distinction without any real meaning: AIDS progressed so quickly that specialists believed counting AIDS cases was the most telling measure of the disease's movement.

But the arrival of potent drug cocktails a decade ago profoundly altered the trajectory of HIV in the developed world, rendering a disease once regarded as a near-certain death sentence into a treatable chronic condition for many patients.

''When it became clear that HIV was where you really needed to understand the epidemic, it became clear that was what we needed to be tracking," said Michael H. Montgomery, chief of the AIDS office in the California Department of Health Services.

So states began developing methods for counting HIV infections. Some opted for the names-based approach. Other states, including California and Massachusetts, devised elaborate codes, often melding elements from the patient's name, birth date, or Social Security number.

But that resulted in a constellation of different coding systems, and federal disease trackers grew increasingly concerned that it would become impossible to know if some cases were counted multiple times as people moved from one state to another.

There was also the reality that the codes in some states required doctors, already drowning in a sea of paperwork, to complete even more forms -- and as a result, authorities in California discovered, physicians and clinics sometimes didn't bother to report cases.

On Monday, California Governor Arnold Schwarzenegger ended the code system there, signing a law mandating names-based reporting of HIV cases. The measure won the unanimous backing of lawmakers and, in a sign of how much has changed over two decades, AIDS advocacy groups that once lobbied against the reporting of HIV patients' names became supporters.

Now only seven states and the District of Columbia have failed to formally adopt a names-based system, including three in New England: Massachusetts, Rhode Island, and Vermont.

In Massachusetts, administrators' decision to abandon the code system must be ratified by the state's Public Health Council, largely considered a formality. In Rhode Island, the Legislature is weighing names-based reporting. And in Vermont, the health agency continues to use codes, with no immediate plans to change.

New England's largest private provider of HIV prevention and education services, the AIDS Action Committee of Massachusetts, vows to fight the shift to names reporting. Its leaders point to two notorious cases in Florida -- one in the 1990s, another more recently -- when the names of HIV-positive patients were released by public health authorities. One episode involved malicious intent while the other was inadvertent.

Denise McWilliams, director of public policy and legal affairs at AIDS Action, said that authorities should do nothing that might discourage HIV testing -- particularly when specialists estimate that one-quarter of people carrying the virus don't know they have it. Testing is critical, specialists said, so patients can start treatments before the virus destroys their immune systems, and so that infected patients know the dangers of engaging in risky behaviors.

''I'm not telling you everyone is going to be frightened away from testing," McWilliams said. ''I will tell you that the people we most want to engage in the care system are the folks who are most concerned about confidentiality."

The experience with names-based reporting in New York suggests, however, that it hasn't deterred people from being tested. Clinics there began reporting the names of HIV patients in 2000. In that year, Gay Men's Health Crisis, a renowned provider of AIDS services, conducted 1,200 tests. This year, it expects to do 3,000.

''With names-based reporting, we let them know right up front that their name will go to the department of health if they test positive, and that they're trying to track the numbers, that there has never been a breach of confidentiality in New York," said Patricia Kummel, director of prevention services at the health center.

Still, she conceded, not every person who comes to be tested is forthright in providing a name.

''We have a lot of George Washingtons," Kummel said, ''and I don't know that there are that many people with that name."

Stephen Smith can be reached at

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