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California Changes to HIV Names Reporting
  'Change in HIV reports in works'
- Sabin Russell, SF Chronicle Medical Writer
Monday, February 20, 2006
California lawmakers this week are preparing to ditch a rule that for two decades has been a pillar of California AIDS policy: that the names of those who test positive for HIV would not be reported to the state.
The rule afforded an extra measure of privacy and protection from discrimination for those who were infected with HIV -- the virus that causes AIDS -- for the average of 10 years it takes the disease to progress to life-threatening illness.
But on Tuesday, the Assembly Health Committee will hold hearings on a bill requiring doctors to report to county health officials the names of those who have a positive HIV test. The names will be collected and held in a secure computer by the state.
The measure has already passed the Senate, and is expected to win quick approval in the Assembly and from Gov. Arnold Schwarzenegger. It has the backing of AIDS advocacy groups that for years fiercely resisted any move toward what is known as names reporting.
An obvious reason for the turnabout is a looming threat from the federal government to cut off hundreds of millions of dollars in AIDS assistance to states that do not adopt names reporting. State lawmakers estimate California could lose $50 million a year without the change.
Advocates are also conceding, however, that the policy meant to protect privacy and encourage gay men to get tested for HIV had outlived its usefulness in an epidemic that bears little resemblance to its earliest days.
"The rationale for holding this position dissolved over time," said Mark Cloutier, executive director of the San Francisco AIDS Foundation, which endorsed the name-based bill last fall, after years of opposition to the concept.
Like other states, California has, since the beginning of the epidemic, collected the names of those whose HIV disease has progressed to AIDS. There is no evidence that the confidentiality of that list has ever been breached.
"My view against names reporting has changed quite dramatically," said Tom Coates, an AIDS prevention expert at the UCLA David Geffen School of Medicine. "People used to think it would deter people from getting tested. But the experiment's been done, and it hasn't happened. ... It's time not to worry about it any more.''
The anticipated transition of California to the name-reporting system marks another step away from what has been called "AIDS exceptionalism," where the epidemic is treated preferentially and differently from other public health priorities.
Increasingly, HIV/AIDS cases are being addressed in the public health system just like other sexually transmitted diseases. In San Francisco, for example, city health workers are expanding a program to notify the sexual partners of patients newly diagnosed with HIV infection -- using the same "contact tracing" techniques developed in the 1940s to reduce the spread of syphilis.
"Many people, myself included, supported AIDS exceptions in the 1980s, when AIDS was an incurable disease,'' said Michael Weinstein, president of the AIDS Healthcare Foundation in Los Angeles, which has been advocating names-based reporting for five years. "With AIDS being a treatable illness, it's time to rethink that."
The emergence of effective combination drug therapies in the mid-1990s changed the meaning of an HIV diagnosis. It created for the first time a powerful incentive to be tested.
But the real drive to change to name-based reporting is a congressional mandate. At the start of the fiscal year 2007 in October, money from the federal Ryan White CARE Act must be distributed to states based on the number of HIV diagnoses -- not the number of recorded AIDS cases.
The catch for California is that the official tally of HIV cases that will be used for distribution of Ryan White money is kept by the federal Centers for Disease Control and Prevention in Atlanta, which insists it will only count cases that are reported to a state by name.
"We've wanted the HIV data to help policymakers understand who needs care and to come up with appropriate dollars,'' said Dr. Robert Janssen, the CDC's division director for HIV/AIDS Prevention.
Janssen said that without collecting the names of HIV-infected patients, it is virtually impossible to avoid errors such as double reporting of the same case. On the East Coast, where many states occupy relatively small geographical areas, the Center for Disease Control found a 20 percent duplication rate. "That is not equitable or accurate,'' Janssen said.
When the center first called for a name-based system in December 1999, most of the states with the largest number of AIDS cases -- such as New York, California and Illinois -- did not report the names of HIV cases, and faced strong political opposition to doing so.
So systems to collect HIV cases using a code instead of a name were developed. After lengthy wrangling in the state Legislature, California began implementing its code-based system in 2002.
Now, however, the CDC has declared the code-based systems from multiple states unworkable. "If you have a complicated code, one person can become two persons, or multiple persons,'' Janssen said.
Support for California's code-based system has also eroded within the state. "It overtaxed the county health departments, and led to a backlog in the reporting of cases," said Michael Montgomery, chief of the Office of AIDS at the California Department of Health Services.
With the $1.4 million spent annually on the coded system, Montgomery said it will take California at least three years to convert to the name-based system. "We have to clean out from the registry all existing HIV data, and start all over again. The counties will have to redo it. It will be a big undertaking,'' Montgomery said.
Although the legislation mandating name-based reporting is expected to breeze through Sacramento, state officials acknowledge that the data won't be ready for the federal government's fiscal 2007 deadline. In theory, Ryan White money that cities and counties have relied upon for AIDS programs could still be lost.
"I do think there is a danger,'' said Montgomery. "We are talking to the California congressional delegation, asking them to protect states that are in the process of converting.''
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