[Med-privacy] HIV/AIDS

[Peter Marshall]

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[NYT]

February 2, 2006

Overhaul Urged for Laws on AIDS Tests and Data
By MARC SANTORA


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.
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[NYT]


<bold><x-tad-smaller>February 2, 2006


</x-tad-smaller></bold><bold><bigger><bigger><bigger><bigger><bigger><x-tad-bigger>Overhaul
Urged for Laws on AIDS Tests and Data

</x-tad-bigger></bigger></bigger></bigger></bigger></bigger></bold><bold><x-tad-smaller>By
</x-tad-smaller><color><param>0000,0000,6666</param><x-tad-smaller>MARC
SANTORA</x-tad-smaller></color><x-tad-smaller>



</x-tad-smaller></bold><bigger>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
<color><param>0000,0000,6666</param>H.I.V.</color> 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
<color><param>0000,0000,6666</param>virus</color> 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
<color><param>0000,0000,6666</param>epidemic</color>. 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
<color><param>0000,0000,6666</param>Michael R. Bloomberg</color>
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.</bigger>
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