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n Oct. 16, the American Civil Liberties
Union issued a 22-page document entitled
“HIV Surveillance and Name Reporting: A
Public Health Case for Protecting Civil
Liberties,” which blasted HIV names reporting
and argues that such a plan would undermine both
public health and civil liberties.
The report also concludes that HIV names
reporting would discourage a significant portion
of the public from being tested, thereby hamper­
ing HIV tracking.
“Although there are many vexing questions
raised by the epidemic, HIV names reporting is
not one of them,” says Michael Adams, a staff
attorney with the A CLU ’s AIDS Project and one
of the report’s principal authors. “Proponents of
aggressive HIV surveillance are shooting them­
selves in the foot by advocating names reporting,
because doing so will shrink the pool of people
who would get tested for HIV.”
The ACLU says it recognizes that the emer­
gence of promising new medical treatments and
improved legal protections have shifted the focus
of epidemiological surveillance to the “front end”
of the AIDS epidemic— HIV infection— and that
the benefits of early medical intervention, which
didn’t exist just a few years ago, have placed
greater emphasis on learning people’s HIV status.
The ACLU also notes that proponents of
names reporting argue the passage o f the
Americans with Disabilities Act has strengthened
legal protections for people with HIV, easing con­
cerns that names reporting will expose individu­
als to discrimination by employers, insurance
companies and government agencies.
The ACLU says, however, that while these
developments may warrant better HIV tracking,
they do not justify names reporting.
According to one of the nine comprehensive
studies cited in the ACLU’s report, more than 60
percent of individuals tested anonymously would
not have tested if their names were reported to
public health officials. The group says similar
conclusions were reached by the other studies,
strongly suggesting that names reporting would
obstruct efforts by public health officials to better
track HIV cases.
The A CLU ’s report also found legal protection
against HIV discrimination to be far from secure,
despite the passage o f the ADA.
It notes two recent federal appeals court rul­
ings that strictly limit the reach of the ADA in bar­
ring discrimination based on HIV status. In a rul­
ing by the 4th U.S. Circuit Court o f Appeals, the
court held that the ADA does not cover people
with HIV who are free of AIDS-related symp­
toms. The 6th Circuit, meanwhile, ruled the ADA
does not protect people with either HIV or AIDS
from discrimination in insurance.
“In sum, the fears that drive people away from
HIV testing with names reporting are not ground­
less. To eliminate them, we need more than edu­
O
nuse
cation; we need solid antidiscrimination protec­
tion and real availability of treatment for the poor
and uninsured,” the report says.
Doug Zeh, of the Portland-based Cascade
AIDS Project, says CAP receives many calls
from people who think they may have been dis­
criminated against because of their HIV status.
“We get at least one a week, which is enough
to cause concern,” he tells Just Out.
he Human Rights Campaign, the nation’s
largest lesbian and gay political organiza­
tion, meanwhile, is calling upon the CDC to
address a number of issues as the agency pro­
ceeds in developing an expanded HIV surveil­
lance system.
Seth Kilboum, HRC’s senior policy advocate
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According to one oj the nine
comprehensive studies cited in the
ACLU's report , more than 60 percent
>f individuals tested anonymously
would not have tested
if their names were
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reported to public
health officials.
The group says similar
conclusions were
reached by the other
studies , strongly suggesting
that names reporting would
obstruct efforts by public
. ■ I
health officials to better track
HIV cases.
for health issues, says the need for an expanded
HIV surveillance system must be fully explained
and justified, and that the CDC must demonstrate
that the benefits of expanded HIV surveillance
will outweigh the costs, both in terms of resources
and increased risk of confidentiality breaches.
Additionally, Kilboum says confidentiality
and privacy concerns are legitimate, and argues
that the use of coded identification must be fully
explored as an option. If names are to be used, he
says, the CDC must demonstrate that they are an
essential part of the surveillance system.
Some in Oregon echo that sentiment. Susan
Stoltenberg, CAP’S executive director, says OHD
has provided no evidence that names reporting
will lead to better data collection.
“ It’s just a theory,” says Stoltenberg, who crit­
icizes the agency for failing to solicit broad-based
w i itb All the
input from the public.
Stoltenberg also criticizes OHD for scheduling
a recent public meeting on the issue at the same
time as an AIDS summit featuring many con­
sumers. The meeting was held in Northeast
Portland, while the conference (which was
cosponsored by OHD) was held in Beaverton.
“That wasn’t an accident,” she says.
As for HRC, Kilboum says anonymous testing
must be accessible to anyone who seeks it, and
surveillance systems at the local, state and nation­
al level must be separated from any partner noti­
fication and contact tracing systems.
“In a perfect world— in which gay people had
full civil rights protections— names reporting
would not be controversial,” he says. “But as long
as people can lose their jobs, their homes or their
children merely for being gay, privacy concerns
are legitimate.”
dopting a names reporting plan in Oregon
would simply require an adjustment of state
administrative rules, not a legislative act.
Modesitt says OHD representatives have been
meeting with county health officials as well as
community advocates to discuss the proposal,
which calls for expanding confidential physician
and laboratory-based disease reporting to include
all HIV-infected people. Laboratories would have
to report antibody testing, viral load and other
tests indicative of HIV infection, and physicians
would have to report all newly diagnosed HIV-
infected people as they do AIDS cases.
But it’s the component that calls for names to
be reported to county health departments that
A
some find especially troublesome— particularly
for people in rural areas who may not seek testing
for fear word will get out.
“ Let’s say you’re living in a little town in
Eastern Oregon: Everyone knows everybody.
People will worry their neighbors or families will
somehow find out,” says one gay man living with
HIV.
The man, who is an HIV/AIDS consumer
advocate, has lived nearly his whole 30-plus years
in a rural community about 30 miles from
Portland.
He says he was the victim of a violent hate
crime in his own yard a few years back, clubbed
by a band of young men who called him “faggot”
as they beat him. He asked that his name not be
revealed, because he still worries about discrimi­
nation and harassment.
“It’s different in smaller communities,” he
says.
With respect to names reporting, he says even
if confidentiality is guaranteed, the perception
alone of a possible slip is enough to deter people
from getting tested.
He also notes that some people within ethnic
minority populations are already distrustful of
bureaucratic institutions and harbor strong fears
of ostracism within their own communities.
Others say immigrants and undocumented
workers— now the target of an aggressive gov­
ernment crackdown— may also balk at getting
tested or seeking treatment for fear of deportation.
“ Latinos, African Americans, street people—
all are distrustful of public health,” says longtime
consumer advocate Jack Cox, who tested positive
for HIV a dozen years ago.
He says had names reporting been the order of
the day back then, he might not have sought test­
ing. “ I would have been scared,” he says. “ I think
in the gay community w e’ve come a long way in
terms o f fears about stigma, but my guess is other
communities now are where the gay community
was 10 years ago.”
In 1994, Cox organized the HIV Advisory
Council of Oregon and Southwest Washington,
which works to improve HIV/AIDS services and
give a voice to consumers.
“ In an ideal world names reporting may work,
but this is the real world— there are too many
social risks,” he says.
Back at OHD, Modesitt says it’s imperative
that his agency’s plan has the support of county
health authorities.
“This is a collaborative effort,” he says. “We
w on’t move forward unless w e’re in agreement.”
Modesitt says OHD hopes to have a proposal that
is endorsed by county health departments by
January; he would like to see a plan implemented
by April 1998. Modesitt says that since the pro­
posal could be adopted via an administrative rule
change, there would likely be just one hearing for
public discussion.
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