12 ▼ n o ven iba r 2 1 , 1907 ▼ Ju*t out
local news
he Oregon Health Division is
proposing that the names of people
who test positive for HIV be report
ed to the state as well as county
health departments.
OHD says it plans to use the information to
track statistical data about the HIV epidemic;
counties will theoretically use the information to
contact providers and those with HIV to offer
assistance in obtaining medical and social sup
port.
State health officials speculate that if the pro
posal were implemented it could, among other
things, paint a more accurate portrait of the dis
ease’s reach, as well as help make sure that more
people who test positive get the care they need.
“Until recently, there wasn’t much we could
offer in the way of treatments, but that has shifted
remarkably,” says Steve Modesitt, manager of
OHD’s HIV surveillance section. “Now there is a
lot of hope for people, particularly if they get care
early on.”
Each state must report AIDS cases. Until now,
however, many states, including Oregon, have
refrained from widespread reporting efforts for
people with HIV.
For a decade, those in Oregon who have test
ed positive for HIV have been reported anony
mously to OHD, and Modesitt stresses that under
the new proposal anonymous testing will contin
ue to be available to those who want it. However,
he says, under the proposal if a person were to test
positive and then seek medical care, their name
would be reported automatically by health profes
sionals.
Currently, people’s names are reported to
OHD and local health departments when they
meet the criteria for an AIDS diagnosis. Cases
where the names of people who merely test HIV
positive are reported include children younger
than age 6, and people who fall into certain “spe
cial circumstances” categories, such as convicted
sex offenders, and blood and tissue donors.
T
ot surprisingly, the state’s proposal is gen
erating concerns from some who fear that
names reporting will deter people from
getting tested, as well as lead to an increase in dis
crimination.
And dialogue over the politically charged
issue isn’t limited to Oregon.
According to an Oct. 21 New York Times
report, the federal Centers for Disease Control
and Prevention is floating the idea of recom
mending that states require people with HIV be
reported by name to state health departments, fol
lowing the same practice used for infectious dis
eases like tuberculosis and syphilis. (TVventy-
eight states currently have HIV names reporting
to some extent.)
The trial balloon is evoking response nation
wide, as is the publication of an article in the Oct.
N
Nam ing names
If OHD has its nay, people who test positive for HIV will be
reported by name to state and county health authorities
by Inga Sorensen
16 issue of the New England Journal o f Medicine.
The piece, authored by Dr. John W. Ward,
chief of the CDC’s HIV/AIDS surveillance
branch, along with Lawrence O. Gostin, a direc
tor of the Georgetown University-Johns Hopkins
Universi-ty Program on Law and Public Health,
and A. Cornelius Baker, executive director of the
National Association for People with AIDS, a
leading constituency group based in Washington,
D.C., calls for a national system of mandatory
HIV reporting.
The article says the advent of more promising
treatments for HIV disease makes it imperative to
better track HIV infections and link people with
HIV to care.
And because fewer people are progressing to
AIDS, proponents argue that AIDS data is no
longer an accurate gauge of HIV prevalence.
“Unless we revise our surveillance system,
health authorities will not have reliable informa
tion about the prevalence, incidence and future
directions of HIV infection, the kinds of behavior
that currently increase the risk of HIV transmis
sion or the heightened impact on specific subpop
ulations, such as racial and ethnic minorities and
women. To correct these deficits, we propose all
states require HIV case reporting,” the trio wrote.
The CDC plans to release recommendations
early next year about whether the names of peo
ple with HIV should be reported to health depart
ments.
The CDC can’t force states and cities to com
ply with its recommendations because it is not a
regulatory agency. However, it provides funding
for most AIDS surveillance efforts, and could
include such a requirement as a condition of
receiving federal funds. It is not known whether
the CDC plans to incorporate a reporting require
ment in its funding contracts set to begin in
January.
Ward told the Times there were no “immediate
plans” to tie federal funding to a willingness to
conduct mandatory HIV reporting. “But Ward did
not rule out a change of the terms under which
states and cities receive federal surveillance
funds,” the paper reports. “ ‘That’s something we
have to decide on,’ he said.”
Before issuing its recommendations, the CDC
is planning to study the effectiveness of coded
identification (also called unique identifier) sys
tems in two states, as well as examine public atti
tudes toward HIV testing in nine other states.
Many advocacy groups favor coded identifica
tion over names reporting. The former would
assign a random and unique alphanumeric code to
each person who gets tested for HIV. Proponents
say such a system would preserve confidentiality
and provide better epidemiological data by
encouraging testing and minimizing duplicate
names. (Among others, the Gay and Lesbian
Medical Association has announced its strong
opposition to names reporting, and has urged the
CDC to more aggressively study ways to protect
patient confidentiality.)
According to the Times, “Baker characterized
the journal article as neutral on whether to use
names or coded identification. But the article said
coded identification did not provide reliable data
at a reasonable cost, citing two states, Maryland
and Texas, which use coded identifiers that con
sist of the last four digits of the Social Security
number, as well as birth date, sex and race.”
Modesitt also believes a coded identification
system may prove administratively cumbersome
and expensive.
“Plus we’re not only doing this for the num
bers,” he says. “We want to make sure people are
getting care.”
As for privacy concerns, the journal authors
argue that the names of people with HIV have
already been entered into other databases, “like
those of Medicaid and drug-assistance registries,
in addition to being widely used by insurers, man
aged care organizations and researchers.”
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