Name-calling: for minorities already mistrustful of government, HIV names reporting could lead to fewer people getting tested for the disease.

For minorities already distrustful of government, HIV 

names reporting could lead to fewer people getting

tested for the disease

If whites with HIV shudder at the

thought of Big Brother's punching

their names into a database that tracks

those infected, minorities with the

disease are rerunning scared. Indeed,

for some people, when it comes to mixing

government and health, two words come to

mind: Tuskegee experiment.

"The legacy of the Tuskegee experiment

still reverberates," observes A. Cornelius

Baker, the HIV-positive executive director

of the National Association of People With

AIDS in Washington, D.C., referring to a

syphilis study conducted from 1932 to 1972

in which 400 black men in Alabama were

denied treatment for the disease.

It wasn't until 1997, when President

Clinton called the experiment "shameful"

while addressing a group of the study's

participants and their families, that the

black community received an official

government apology. "In the African-American

community," says Baker, "trust is

very low."

Sometime during the next couple of

months, the Centers for Disease Control

and Prevention in Atlanta will issue a set of

recommendations on how state health

officials should conduct the reporting of

HIV cases. It is widely believed--and in

many cases feared--that the upcoming CDC 

recommendations will push for a system of

HIV reporting that requires states to collect

names.

Meanwhile, Rep. Tom A. Coburn

(R-Okla.) has introduced a bill in Congress

that would not only mandate states to

report HIV infections but also require

partner notification and sexual-contact

tracing. The bill would also give health care

workers the right to deny care to anyone

who refuses to take an HIV test.

The result, say leaders of several

minority AIDS organizations, could be a

new wave of people opting not to get

tested. "Names reporting would have an

absolutely detrimental effect in the Latino

community," says Dennis deLeon. The HIV-positive

president of the Latino Commission on AIDS

in New York City. A December survey by

the commission found that while 88%

of Latinos would take an HIV test if

their names were not reported to any

government agency, only 28% would

do so if their names were reported in

the event they tested positive. However,

in a separate survey conducted by

the New York City Department of

Health, researchers found that only

22% of African-American and Hispanic

participants would avoid being tested

for HIV if their names were reported to

public health officials.

"There is tremendous fear of government,"

warns deLeon, adding that

the impact of names reporting in the

Latino community could be felt in ways

that the out gay community does not

imagine. "In the gay community there

is a culture of support" for HIV-positive

people, he says. "But in the Latino

community, people view an HIV-positive

diagnosis as very isolating. So people

would be much more cautious

about their names getting out because

of the cultural consequences."

In the book Latino Gay Men and

HIV: Culture, Sexuality, and Risk Behavior,

author Rafael M. Diaz, a professor

at the Center for AIDS Prevention

Studies at the University of California,

San Francisco, argues that oppressive

sociocultural factors and values such

as machismo, homophobia, family loyalty,

and sexual silence as well as

poverty and racism already interfere

with some gay Latinos' likelihood of

practicing safer sex. He argues that

prevention efforts need to break the

"sexual silence" as opposed to being

couched in imperatives and requests

for compliance.

The combination of government distrust

and fear of cultural exclusion

runs high in many immigrant communities,

adds Fernando Chang-Muy, former

legal officer with the World Health

Organization's Global Program on

AIDS and now a law professor at the

University of Pennsylvania. "In the

Asian community everyone tends to

know each other," he says. "So if a

name gets out, it could result in almost

anything, from being shunned in the

community to deportation."

Noncitizens in the United States 

have one of two statuses: nonimmigrant 

or immigrant. Nonimmigrants,

including students who could be in

this country for as long as ten years to

get a Ph.D., can be deported for having

HIV, Chang-Muy explains. Immigrants--those

with green cards, for example--cannot.

M. Saidia McLaughlin, a health educator

with the Minority Task Force on

AIDS in New York City, calls the

threat of name disclosure from an

HIV-positive test "a double whammy"

for immigrants. First, there is the

"general mistrust of the government

having too much information on you."

Second is the attitude that "no one is

going to want to wreck their quest for 

citizenship."

Still, the idea of reporting HIV cases

by name isn't new--28 states already

do it, although these states

account for only 33% of the

nation's AIDS cases. Two

additional states--Maryland

and Texas--do HIV reporting

through a secret

code, or "unique identifier,"

which does not require collecting

names.

All states require physicians

to report cases of full-blown

AIDS to public health

departments. Most of those

policies were adopted early

in the AIDS epidemic, when

an AIDS diagnosis meant

that a patient didn't have

long to live. Now, however,

given the improved life expectancies

for those with

HIV or AIDS, fears of discrimination

during that time

are much more nagging and

real, AIDS activists argue.

Still, arguments in favor of reporting

HIV cases--though not necessarily by

name--are plentiful. In fact, the nation's

largest AIDS organization, the

New York City-based Gay Men's

Health Crisis, went on record in January

saying such tracking is necessary

because the epidemic is constantly

changing. However, GMHC's policy

statement calls for "a monitoring system

with strong and enforceable privacy

protections to prevent discrimination

against people who are HIV-positive."

It also calls for evaluation and implementation

of a system of unique identifiers

to be used in reporting.

Baker agrees that HIV reporting

would yield better information on the

state of the epidemic, including tracking

changes in the virus within different

populations. "In 1998 AIDS-stage

illness isn't how we should be conceiving

of this disease," he says,

pointing out that the current system

of AIDS reporting gives a ten-year-old

snapshot of the epidemic (it takes

roughly a decade between the time of

infection with HIV and the onset of

the illnesses that define AIDS).

Just about everyone concedes that,

given new drug therapies such as protease 

inhibitors, the window between

infection and illness is likely to increase.

HIV reporting would allow experts to

get a better picture of the most recent

HIV trends: what populations are being

hit hardest and where education and

prevention efforts are most needed.

H. Alexander Robinson, president of

the board of the National Task Force on

AIDS Prevention, a San Francisco-based

organization for gay men of

color, says people concerned about HIV

names reporting are equally concerned

about access to care and want to see if

the former would affect the latter. "The

segment of the population that is already

exposed to the public health care

system may be more used to divulging

important information about themselves

in order to get assistance," he

says. "So the issue for them when it

comes to names reporting is this:

What's the payoff? If I give my name,

will I be assured access to health care?

"Sure, names reporting would give

us a better picture of HIV, but will that

picture affect how we allocate funds to

those who most need them?" asks

Robinson. McLaughlin also questions

how the newly gathered information

would be used to help the most disadvantaged

people in the health care system--by

and large, minorities and immigrants.

"The way our health care

system is set up, minorities are already

disadvantaged when it comes to access

to care," McLaughlin says. "So some

people might look at this as just another

layer to a long list of very oppressive

ideas in the health care system."

Meanwhile, some activists believe

the CDC has been quietly trying to get

state health officials used to the idea of

reporting HIV cases by name. CDC officials

deny this, saying that while names

reporting has been the most reliable

means of surveillance to date, it is still

evaluating other means. Last September

the CDC sent out a survey to all

state health departments to

determine "[w]hat steps

must be taken ... to allow

for ... reporting of persons (by

name) with laboratory evidence

of HIV infection." The

CDC is convinced of the

need for HIV reporting by

some means, says John

Ward, chief of AIDS/HIV surveillance

at the CDC. A September

article in the CDC's

Morbidity and Mortality 

Weekly Report noted that, in

light of the decline in AIDS

cases, HIV reporting would

provide a better picture of

the epidemic. An October article

in The New England 

Journal of Medicine, coauthored

by Ward, Baker, and

Lawrence O. Gostin of the

Georgetown University Law

Center, discussed HIV reporting

by name and other means.

Ward says he hopes that the CDC

recommendations for HIV reporting

will be finalized by the end of the year

and that all states will be doing HIV reporting

by early 1999: "There is no

question in my mind that, sooner or

later, HIV surveillance will happen."