Overhaul Urged for Laws on AIDS Tests and Data
New York City's health commissioner, Dr. Thomas R. Frieden, called yesterday for changing state laws so that health officials could more aggressively test people for H.I.V. and AIDS and use the medical information the city already collects to help treat those infected.
Currently, the city and the state collect detailed data about specific patients with H.I.V./AIDS, with their names attached, but health officials are prevented by law from using that information to contact those patients or their doctors about their treatment.
In addition to wanting to change those laws, Dr. Frieden also wants to make testing for the virus a routine part of medical care, simplifying the process by which a patient consents to be tested.
"We know people are dying," Dr. Frieden said yesterday as he outlined his proposals publicly for the first time. "And we are prohibited by law from lifting a finger to try and help."
The collection of state laws governing the public health response to H.I.V./AIDS was created nearly two decades ago, and it has been fiercely defended by both lawmakers and patient advocates ever since. From the beginning, AIDS was treated differently from any other infectious disease, so Dr. Frieden could face stiff political resistance. He stressed that he is in no way proposing mandatory testing or treatment.
The central law that Dr. Frieden, with the support of the Bloomberg administration, is taking aim at was put in place in 1988, when contracting H.I.V. was the equivalent of a death sentence because there was no effective treatment, much less a cure. With the disease primarily affecting gay men, those who found themselves identified as sick with the disease were often subjected to discrimination and hostility.
The state laws, particularly those governing privacy concerns, were an attempt to encourage people to be tested and treated while offering them some protection. Since then, an extensive advocacy network has grown both to help patients and to lobby public officials to protect the information about patients with the virus.
With the introduction of effective drug treatments in the late 1990's, the death rates from AIDS have plummeted, and great strides have been made in reducing mother-to-child transmission of H.I.V. as well as in cutting the rate of transmission among intravenous drug users.
For the past decade, however, new infections continue to occur at troubling rates, and the population affected has changed drastically, with blacks and Hispanics accounting for 80 percent of new diagnoses and deaths. Transmission through heterosexual sex, particularly among black women, has also risen significantly.
Today, black men with the disease are six times as likely to die of the disease as white men, and black women are nine times as likely to die as white women.
Dr. Frieden believes that this disparity reflects the way efforts to test for the disease and treat it have not evolved to keep pace with the changing nature of the epidemic. His proposals, he contends, would help those in a population that does not get tested early enough, who are often sick by the time they know their status, and who are often stranded without the good medical care available to the more prosperous.
In his State of the City address last week, Mayor Michael R. Bloomberg signaled his strong support for an aggressive new approach, saying, "Over the next three years, our goal is to cut the number of H.I.V.-related deaths by more than 40 percent."
Dr. Frieden believes that a change in state law is needed to achieve that goal, although he readily acknowledges that getting changes made in Albany will be an uphill fight. City health officials have been working for months to win support for the changes, and some community health leaders have publicly endorsed the approach. But when Dr. Frieden presented his proposal publicly at the New York State AIDS Advisory Council meeting yesterday, he was met with skepticism.
The primary concern was that changing state laws would loosen New York's stringent privacy protections.
State Senator Thomas K. Duane, a Manhattan Democrat, said that the disease still carried a stigma and that it was unwise to move too quickly. "It is our responsibility to be incredibly cautious for those who do not have much of a voice," Mr. Duane said. He later added, "I don't, at this moment, agree that we need to open Pandora's box."
Dr. Frieden, saying that privacy would continue to be of paramount importance, cited statistics on delays in diagnosis that he said put lives at risk. For example, in 2004 there were 1,038 patients who first learned they had H.I.V. when they were already sick with AIDS. "That's a damning indictment of our system," he said.
Dr. Frieden has pushed for more aggressive collection of data in the past, most publicly after he announced the detection of what he called a rare and possibly virulent strain of the virus detected in a New York man in February last year. The proposals he outlined yesterday go much further.
New York has the highest H.I.V./AIDS rates in the country, with more infected people than Los Angeles, Washington, San Francisco and Miami combined. Dr. Frieden noted that any changes the city and the state make are sure to be closely watched.
Prof. Charles Gilks, an official at the World Health Organization who directs one of its H.I.V./AIDS programs, sent Dr. Frieden a note of support. "Many countries take their lead from the U.S. or Europe," he wrote in an e-mail message.
When questioned about his plan, Dr. Frieden suggested that he wanted to do away with the written consent forms now required before any test is given by a health care provider, while still requiring spoken consent. He also said he supported doing away with the requirement that physicians detail the reasons a patient may not want to be tested for H.I.V.
The city and the state collect detailed patient data for a variety of infectious diseases that laboratories across New York are mandated to report, including information about H.I.V./AIDS. Dr. Frieden contends that health officials should be able to use that information to consult directly with patients and their doctors. He said that information would not be given to the wider health care community.
In an interview, he said that as one example, if the city had information that a patient had an extremely high viral load and a low T-cell count indicating that the person was likely to die within months unless action was taken, health workers would reach out to the treating physician.
Terri Smith, the public policy director for Housing Works, a patient advocacy group, said she was concerned about an unknown health department employee contacting a patient's doctor.
Dr. Frieden said that because everything remained voluntary, he believed that both physicians and patients would eventually welcome the changes.