O blog do GAT

HIV names reporting gaining in popularity
D.C. and Md. among handful to use codes, risking funds

By LOU CHIBBARO, JR.
Dec. 02, 2005
NATIONAL NEWS washingtonblade.com

In the 1980s, when many feared that AIDS could be spread through
casual contact, gay and AIDS activists considered the idea of
reporting the names of people who tested positive for HIV to
government health departments to be out of the question.

Agreeing with activists that an HIV diagnosis could lead to
discrimination and hostility, health departments in most of the states
shunned names reporting procedures and embraced the concept of
anonymous HIV testing programs.

Now, more than 20 years later, the trend is going in the opposite
direction. Thirty-nine states have adopted systems of confidential HIV
names reporting similar to the names reporting procedures that have
been in place for nearly a century for other sexually transmitted
diseases.

New York and Illinois were the latest states to adopt a names
reporting system, with the Illinois system set to take effect in
January. Georgia adopted a names reporting system in December 2003.
Officials there said the new system did not lead to a decrease in the
number of people being tested.

To the surprise of some activists, AIDS organizations that for years
have objected to names reporting have quietly accepted the changes.

"I have to honestly say the sky has not fallen," said Ronald Johnson,
executive director of the New York City-based Gay Men's Health Crisis,
which became the nation's first AIDS advocacy group in the early
1980s.

Johnson said GMHC did not support a names reporting system when the
New York State Legislature adopted the system with the support of
Republican Governor George Pataki. But he said his group was
pleasantly surprised when it became clear that names reporting
procedures did not lead to a decrease in the number of people getting
tested for HIV at GMHC's facilities or at other testing sites in New
York.

Phill Wilson, executive director of the Black AIDS Institute, which
monitors trends in HIV and AIDS among African American gay men
throughout the country, said his group has observed a similar trend.

"The real question has been, if you move to names reporting, will
people not get tested?" Wilson said. "What we have found is that has
not happened. People have not been deterred from getting tested
because of names reporting."

When the AIDS epidemic burst on the scene in the early 1980s, the U.S.
Centers for Disease Control and Prevention persuaded the states to
report the names of those diagnosed with full-blown AIDS to state
health departments, which in turn, submitted information about cases
to the CDC.

The decision to adopt names reporting for full blown AIDS did not
trigger widespread objections in the early years of the epidemic
because those being diagnosed were already severely ill, and most died
soon after their diagnosis.

The confidentiality issue surfaced several years later, when
researchers discovered the virus that caused AIDS and developed a test
for the human immunodeficiency virus, or HIV, for both the sick and
for individuals who had not yet developed symptoms.

With gay men discovered to be among the groups at high risk for AIDS,
gay and AIDS activists led efforts to keep information surrounding HIV
testing confidential and in many instances anonymous. Activists
strongly opposed a names reporting system for HIV.

1990s brought new challenges

In the 1990s, the development of new and effective drugs that have
largely halted the onset of full-blown AIDS created a new set of
problems for tracking the disease, CDC officials have said. Counting
only AIDS cases was no longer useful for tracking the course of the
epidemic, experts said, because the epidemic consisted mostly of
people with HIV.

When the CDC called for improved data on the number of HIV cases, in
addition to the number of AIDS diagnoses, state health officials
developed a system of encoding the names of persons who tested
positive. That system became known as a "unique identifier system"
because it incorporated into the coding process some personal aspect
of the person being tested, such as a partial date of birth.

Currently, six states including Maryland, as well as the District of
Columbia have unique identifier systems for HIV reporting. Virginia
has a names reporting system.

Five states have a hybrid system that includes both a coded system and
a names-based system. In those states, HIV cases are initially
reported by name and are later converted to a code after public health
officials gather demographic information from the individuals that
tested positive.

The CDC, while not officially opposing the unique identifier system,
has said it fails to meet its certification standards for HIV case
reporting because it is less accurate than the names based system in
tracking the reach of the epidemic. According to CDC officials, the
unique identifier system often leads to duplication in counting cases
for people that move from state to state.

In recent years, state health officials have also said the unique
identifier system is far more costly and time consuming to administer
than the names reporting system.

Earlier this year, the CDC upgraded its support for a names reporting
system by changing its earlier position of "advising" states to adopt
it to "recommending" that they adopt the names system, according to
CDC spokesperson Jessica Frickery.

The CDC's stronger backing for names reporting came at a time when
Congress is poised to change the formula for doling out federal AIDS
funds in a way that could cut off millions of dollars in funds for
unique identifier states and the District of Columbia.

Under the current system, federal AIDS funds — including funds from
the Ryan White CARE Act — are based on the number of reported AIDS
cases. The new system, expected to go into effect in 2007, will base
the allocation of funds on the number of reported HIV cases.

Theoretically, if the CDC doesn't recognize HIV cases reported under
the unique identifier system, states using that system would be
counted as having only full blown AIDS cases, which they now report
through a names system. Under the new Ryan White funding formula, they
would have far fewer cases than states that use a names reporting
system for HIV cases and would likely receive millions of dollars less
in federal funds.

D.C. would be among the jurisdictions considered to have only AIDS
cases, even though D.C. has the nation's highest rate of HIV
infections.

The Department of Health and Human Services, which operates the Ryan
White program, has yet to disclose details on whether unique
identifier states will lose all or some funding under Ryan White. But
AIDS activists and state health departments have begun to respond as
if the new policy will result in the loss of millions of dollars in
federal AIDS funds if they continue with the unique identifier system.

Michael Montgomery, the openly gay chief of California's Office of
AIDS, has called on state officials to consider changing from a unique
identifier system to a names reporting system.

"HIV and AIDS were such a heavily stigmatized disease for populations
that are not power groups in our society," the Associated Press quoted
Montgomery as saying in July. "But we now have laws in place to
protect people from those forms of discrimination," AP quoted him as
saying.

`I have seen the light'

The National State & Territorial AIDS Directors, for which Montgomery
serves as an officer, has recently announced it, too, is considering
support for HIV names reporting as long as strict confidentiality can
be assured.

AIDS organizations in other states, including California and Illinois,
that once opposed names reporting, have also jumped on the names
reporting bandwagon, saying that system provides more accurate data on
the status of the nation's AIDS epidemic.

"I have been a longtime opponent of names reporting," said veteran D.
C. AIDS activist Carl Schmid, director of federal affairs for the AIDS
Institute, a national group. "Now I have seen the light. I feel as
long as confidentiality is assured, names reporting is acceptable and
even preferable."

In D.C., the Gay & Lesbian Activists Alliance has expressed strong
opposition to a names reporting system, saying the unique identifier
system adopted by Mayor Anthony Williams was needed to insure that
people would continue to come forward to get tested for HIV.

GLAA spokesperson Rick Rosendall said the small group of vocal,
longtime activists remains opposed to a names reporting system.

Gay D.C. Councilmember David Catania (I-At-Large) has also expressed
opposition to a names reporting system for the District, on the
grounds that the D.C. HIV/AIDS Administration was incapable of
administering a names systems due to understaffing in its epidemiology
unit.

Marsha Martin, the newly hired director of HAA, said Catania has told
her he would consider supporting changes to a city law that now
requires D.C. to use the unique identifier system if he sees
improvement in HAA's HIV surveillance and epidemiology procedures and
staffing.

Martin said she has taken steps since taking office two months ago to
rebuild HAA's HIV surveillance unit through a possible relationship
with George Washington University's School of Public Health.

© 2005 The Washington Blade A Window Media Publication