The names of
people infected with HIV will be tracked in all 50 states by
the end of 2007, marking a victory for federal health
officials and a quiet defeat for AIDS advocates who
wanted to keep patients' names out of state databases.
Vermont, Maryland
and Hawaii, the last states not tracking the names of
HIV-positive people, are quickly moving toward adopting
names-based surveillance. Eight other states and
Washington, D.C., began collecting the names of HIV
patients last year, and Massachusetts switched in
January.
The states are
bowing to federal pressure so they will not lose money for
medications and health services for patients.
This is the first
year federal funding has been tied to names-based
surveillance of HIV. More than $1.4 billion in federal money
will be distributed this fiscal year based on new
formulas that include numbers of people with HIV
counted by states using names. In some states,
including Illinois, millions of dollars are at stake.
That is why
advocates say they have quit fighting--although they
still worry that collecting names will deter some
people from getting tested and seeking treatment, and
about the possibility of names being released due to
security breaches.
''I have patients
who are very high-profile individuals--physicians in
practice, people who are politicians'' who don't want their
real names reported, said Dan Berger, medical director
of NorthStar Healthcare in Chicago's Lincoln Park.
In a 2005
security breach in Palm Beach County, Fla., the names of
6,500 HIV and AIDS patients were mistakenly e-mailed
to 800 county health workers. Other security breaches
have occurred in California and Kentucky.
Some worry that
names-based reporting could have the greatest effect on
whether minorities and the poor get tested and treated
because they may be less likely to trust the
government to keep their names secret.
In a low-income
Chicago neighborhood 10 miles from Berger's office,
patients now are told they must release their names to the
state to get medications. Bruce Jackson, director of
the Gift House, which offers HIV testing and
counseling in southwest Chicago, said some clients are
apprehensive, fearing their families or friends will find
out they're infected.
Reporting names
''can affect if (disadvantaged people) come back for
care, and it can affect how they describe to other people
their experience of getting tested,'' said Catherine
Hanssens of New York City's Center for HIV Law and
Policy.
There are an
estimated 40,000 new HIV infections annually in the United
States.
Methods of
tracking cases varied from state to state until recently.
Some states, including Illinois, and the city of
Philadelphia previously tracked HIV with identifying
codes that preserved anonymity and were unique to each
patient.
The U.S. Centers
for Disease Control and Prevention rejected code-based
systems after finding they could lead to double-counting and
were cumbersome for health care providers. The CDC
announced its support for names-based HIV reporting in
1999, and strengthened that to a recommendation in
2005.
''After many
evaluations of code-based systems, it became clear that
those systems do not meet CDC standards for HIV data,'' said
Timothy Mastro, deputy director of the Division for
HIV/AIDS Prevention at the CDC. Diseases such as
syphilis, tuberculosis, and AIDS already were tracked
by patient names, he said, making HIV the exception.
Starting this
fiscal year the CDC's HIV numbers were used, along with
AIDS case numbers, by the U.S. Department of Health and
Human Services to calculate funding to cities and
states receiving formula grants through the Ryan White
CARE Act, the government's largest HIV/AIDS program. The
formulas include only HIV data from states using names-based
surveillance.
AIDS advocates,
who argued against collecting names of HIV patients in
the 1990s, preferred code-based systems to protect the
confidentiality of patients and said the CDC ignored
evidence that codes could work.
''I've not so
much changed my opinion as surrendered,'' said Ron Johnson,
deputy executive director of AIDS Action in Washington, D.C.
''I still believe code-based reporting is valid and is
preferable for HIV reporting. It, for all practical
purposes, has become a losing battle.''
For now,
public-health officials are trying to reassure people who
test positive for HIV that stiff security measures
protect state databases of names.
In Illinois staff
members handling names take an oath of confidentiality
and get special training. The names are in a stand-alone
computer system, behind locked doors.
''I've never been
in that room where they're kept. The security is that
tight,'' said Tom Hughes, a deputy director with the
Illinois Department of Public Health.
Participating
states strip names and other identifying information from
their HIV reports before transmitting them in an encrypted
form to the CDC, Hughes and other health officials
said.
Berger, the
Chicago doctor, said he has told some patients not to give
him their real names. He has enrolled patients anonymously
in medical studies of HIV drugs without reporting
their names, he said.
Health officials
said it is impossible to predict how many doctors and
patients are finding ways of keeping names out of databases,
and whether HIV case numbers will show any decline
that can be connected to names-based reporting.
With better drugs
forestalling the progression of HIV to AIDS, people
with no apparent symptoms face knowing their names will be
on a state list for decades--protected by
security measures but nevertheless subject to
exposure.
''In many ways
it's a different world today than the world that motivated
people to insist on anonymous systems for tracking HIV,''
said Suzanne Goldberg, director of the Sexuality and
Gender Law Clinic at Columbia Law School in New York.
''A lot has changed, but unfortunately, not enough.''
(AP)