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Real Estate Resource.
H IV reporting proposal comes
under fire by Jonathan Kipp
^ he Oregon H ealth Division
launched its effort to hear feedback
about a controversial HIV names
reporting proposal during a hearing
Sept. 27 at Portland’s Airport Hol­
iday Inn. The meeting, packed with mostly
opponents to the policy, was the first of four
scheduled throughout the state.
Tom McConnell, who testified at the hear­
ing, says the enemy is not names reporting but
fear and ignorance. He thinks people testing for
HIV don’t want to give their names to health
care workers because they are afraid of the con­
sequences. "My perception is that Oregon is still
not a safe place to have AIDS,” McConnell says.
The proposal would require a name at test
time. After the health division completed its
reports, the name would be changed into a code
and purged from the system permanently.
However, the name could remain in the
state’s hands for as long as 90 days, when the
name automatically would be coded, whether or
not officials had completed their work. The new
system, if adopted, would not affect the avail­
ability of anonymous testing in Oregon.
The hearing came just one day after a protest
outside the health division’s Portland office.
About 50 activists gathered, costumes and props
in tow, and shouted: “No names! No names!”
Protester Marta Guembes told the crowd,
“We will never feel safe giving our names to
someone who cannot keep them safe.” She was
one of several members of the Hispanic Services
Roundtable, a group of Oregon activists who
meet monthly to discuss issues concerning the
community, who showed up to demonstrate.
Days earlier, Dr. Mark Loveless, Oregon
Health Division HIV prevention manager,
briefed the roundtable about the proposal,
answered questions and addressed concerns. He
cited many benefits to following the national
trend of names reporting.
The proposal meets expectations for good
public health and strives to assure full access to
services for everyone who tests positive for HIV,
Loveless says. Names reporting is also the most
cost-effective system, he adds.
Loveless, who also testified during the first
state hearing, says that the proposal protects
confidentiality and that no list of people with
HIV will be kept in the public health system, as
many fear. Names reporting of those testing pos­
itive for HIV was almost unheard of until the
late 1990s, when the face of AIDS started to
change, he says.
Names of people with AIDS have been
reported to public health systems since the
beginning of the epidemic. Because the onset of
AIDS almost always followed HIV transmission,
tracking the epidemic gave health officials the
information they desired: AIDS statistics
reflected the HIV epidemic, says Dr. Martin
Skinner of the Oregon Medical Association.
Loveless says only one-half of the AIDS
cases are being reported today compared to the
early 1990s. W ith the advent of new medicines
and combination “cocktails," people with HIV
are living longer and more productive lives and
warding off the onset of AIDS.
Because of this, epidemiologists think they
can’t learn enough about the spread of HIV by
keeping track of AIDS anymore. HIV names
reporting, some health officials and prevention
experts say, will provide a better understanding of
all stages t>f the epidemic and give needed infor­
mation for prevent ion and services planning.
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About 50 activists stage a protest Sept. 26
outside the Oregon Health Division’s
Portland office
Jack Cox, HIV Advisory Council of Oregon
and Southwest W ashington coordinator,
attended the roundtable, organized the protest
and testified at the state hearing. He agrees with
Loveless and Skinner—but only to a point.
Cox says he and his colleagues, like the doc­
tors, support expanded reporting. The method
of reporting is what he, the protesters and most
of those testifying at the state hearing adamant­
ly disagree with.
Cox and the council support unique identi­
fiers as a reporting method and want the Oregon
Health Division to abandon its proposal of
names reporting. It has too many risks, they say.
Confidentiality rules also need to be
improved, Cox says. “We have breaches of con­
fidentiality in Oregon.”
The Centers for Disease Control and Pre­
vention are recommending expanded reporting
systems nationwide. A total of 32 states have
names reporting, and six are experimenting with
unique identifier systems in which axles are
used in lieu of names.
Loveless said the CDC doesn’t specify any
methodology for names reporting but dixs have
strict guidelines for confidentiality. He main­
tains that breaches of confidentiality have not
occurred in Oregon’s AIDS reporting system.
More than 4,500 AIDS cases have been
reported by name since health officials began
tracking the disease. The Oregon Health Divi­
sion has been taking public comment and study­
ing the options for expanded HIV reporting
since late 1997.
The call for additional public comment is
only the latest development in what has been a
contentious struggle between activists and health
division officials. Opponents of names reporting
say such a system would prevent people from get­
ting tested and defer crucial early treatment.
But Loveless disagrees. In other states, names
reporting ultimately has not scared people away,
he says.
After an initial slowing of individuals getting
tested under the new system, the numbers soon
return to normal, Loveless adds. “It doesn’t appear
any specific community stays away.”
in
The final OREGON HEALTH DIVISION hearing
will be held from 5 to 9 p.m. Oct. 23 m Room 329
at Portland State University’s Smith Center.
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