Just out., January 16, 1998, Page 13, Image 13

just out ▼ January 16, 1998 ▼ 13
On hold
Plans to institute HIV names reporting in Oregon have met with a few snags
by Inga Sorensen
regon health officials have scrapped
a plan, at least temporarily, to re­
quire the names of people who test
positive for HIV to be reported to the
Oregon Health Division and county
health departments.
“Let’s say the proposal is on the shelf for an
undetermined period of time,” says Steve
Modesitt, manager of OHD’s HIV surveillance
section.
He cites pending personnel shifts at OHD and
some negative community feedback on the plan
as reasons for the decision.
Modesitt, along with Dr. Anthony Marfin, the
state’s HIV/STD medical epidemiologist, had
publicly touted the proposal, speculating it would
have painted a more accurate portrait of the
disease’s reach and provided an opportunity to
get needed care to more people who test positive.
The plan generated heated opposition from
many community activists, AIDS service organi­
zations and civil rights groups, though, all of
whom expressed concerns about possible confi­
dentiality breaches and increased discrimination.
To further complicate matters, since Just Out
first reported on the plan on Nov. 21, Marfin has
announced his intentions to leave OHD. A search
is currently underway for his replacement.
“[Marfin] wrote the actual proposal and he’s
since decided he’s leaving,” says Modesitt, add­
ing that the issue will likely be placed on hold for
several months until someone new is installed in
Marfin’s place and “can lead the way on this.”
OHD had initially hoped to have a county
health endorsed proposal by January, and wanted
to see a plan implemented by April. Now that
timeline is history.
“We still think names reporting is the way to
go,” says Modesitt, who nonetheless admits
OHD’s process in gathering community input
and nurturing support was less than stellar.
“Maybe if we had talked with people earlier
about why we needed this, it would have made a
difference,” he says. “This has been an educa­
tional process for us.... I think it’s not a bad idea
that we back off for a while and ask people what
they want.”
O
A «
"or
Prevention’s HIV/AIDS surveillance branch,
along with Lawrence O. Gostin, a director of the
Georgetown University-Johns Hopkins Univer­
sity Program on Law and Public Health, and A.
Cornelius Baker, executive director of the Na­
tional Association for People with AIDS, a lead­
ing constituency group based in Washington.
Each state must report AIDS cases. But until
now, many states, including Oregon, have re­
frained from widespread reporting efforts for
people with HIV.
The authors said in the article that the advent
of more promising treatments for HIV disease
makes it imperative to better track HIV infections
and link people to care. They argued that because
fewer people are progressing to AIDS, AIDS data
is no longer an accurate gauge of HIV prevalence.
They wrote: “Unless we revise our surveil­
lance system, health authorities will not have
reliable information about the prevalence, inci­
dence and future directions of HIV infection, the
kinds of behavior that currently increase the risk
of HIV transmission, or the heightened impact on
specific subpopulations, such as racial and ethnic
minorities and women. To correct these deficits,
we propose all states require HIV case reporting.”
The CDC reportedly planned to release rec­
ommendations early this year about whether the
he issue exploded into the public conscious­
names of people with HIV should be reported to
ness back in October, following the publi­
health departments.
cation of an article in the New England
Journal of Medicine that proposed a national The CDC can’t force states and cities to com­
ply with its recommendations, because it is not a
system of mandatory HIV names reporting. The
regulatory agency. However, it provides funding
piece was authored by Dr. John W. Ward, chief of
for most AIDS surveillance efforts, and could
the federal Centers for Disease Control and
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piede
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information to contact those with HIV to offer
assistance in obtaining medical and social support.
Both in Oregon and nationally, opponents of
names reporting voiced myriad concerns. For
example, on the same day the New England Jour­
nal of Medicine article was released the American
Civil Liberties Union issued a 22-page document
entitled “HIV Surveillance and Name Reporting:
A Public Health Case for Protecting Civil Liber­
ties,” which blasted HIV names reporting and
argued that such a plan would undermine both
public health and civil liberties.
The report concluded that HIV names report­
ing would discourage a significant portion of the
public from being tested, thereby hampering HIV
tracking. Additionally, the ACLU found that legal
protection against HIV discrimination was far
from secure, despite the passage a few years back
of the federal Americans with Disabilities Act.
“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
include such a requirement as a condition of
cation; we need solid anti-discrimination protec­
receiving federal funds.
tion and real availability of treatment for the poor
Before issuing its recommendations the CDC
and uninsured,” the report said.
said it planned to study the effectiveness of unique
Meanwhile the Human Rights Campaign, the
identifier (also called coded identification) sys­
nation’s largest lesbian and gay political organi­
tems in two states, as well as examine public
zation, called upon the CDC to fully explain and
attitudes toward HIV testing in nine other states.
justify the need for an expanded HIV surveillance
Many advocacy groups favor unique identifi­
system.
ers instead of names reporting. The former would
It said confidentiality and privacy concerns
assign a unique alphanumeric code at random to
were legitimate, and argued that the use of unique
each person who gets tested for HIV. Proponents
identifiers must be fully explored as an option. If
say such a system would preserve confidentiality
names are to be used, HRC said, the CDC must
and provide better epidemiological data by en­
demonstrate that they are an essential part of the
couraging testing and minimizing duplicate names.
surveillance system.
OHD, meanwhile, crafted its own proposal,
Some Oregonians echoed that sentiment,
which called for names reporting. Modesitt told
among them Susan Stoltenberg, executive direc­
Just Out in November that he thought creating a
tor of Cascade AIDS Project.
unique identifier system might prove administra­
She, along with a number of advocates for
tively cumbersome and expensive.
those with HIV and AIDS, said OHD provided no
or more than a decade, people in Oregon
evidence that names reporting would lead to bet­
ter data collection. Stoltenberg also criticized
who have tested positive for HIV have been
anonymously reported to OHD, although
OHD for failing to solicit broad-based input from
the public.
the state does require limited names reporting in
special circumstances for those with HIV regard­
As for news that the state has tabled the plan,
less of the disease’s progression (the list includes
Stoltenberg says: “I guess I have mixed feelings.
convicted sex offenders and children younger
I would have liked for us all to continue to discuss
the matter.”
than age 6).
The new plan would have exponentially ex­
Despite that, Stoltenberg says a coalition of
panded the scope of those required to be reported
HIV/AIDS activists is forming and will continue,
among other actions, to research issues related to
by name, and would have mandated that health
names reporting and unique identifiers in order to
providers report all newly diagnosed HIV-
be prepared when and if OHD’s proposal eventu­
infected people as they do AIDS cases.
ally gets dusted off.
Under the proposal, counties were to use the
F
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