List of HIV patients raises privacy issues in New Jersey State establishes register of 13,205 carriers who may not be ill now


TRENTON N.J. -- Inside a small locked room at the New Jersey Department of Health, a chain-link fence soars to the ceiling, encircling two chairs, a backup computer and a towering main computer. It is called the cage. Padlocked shut, cloaked in privacy, the tall computer holds the names and addresses of 13,205 New Jersey residents who are infected with HIV, the human immunodeficiency virus that causes AIDS.

While every state has long maintained lists of people who have AIDS, New Jersey is the only state with a large number of cases that has gone the next step and established a register of people who are not necessarily ill but who have the virus.

New York and California, the states with the highest number of AIDS cases, are in the middle of heated debates over the issue, a debate that often pits public-health goals against worries about confidentiality.

Many debates about AIDS issues happen at a fever pitch across the country, and the positions are often divisive and entrenched. In New Jersey, the relationship between private advocacy groups and the government has been less strained.

But the six years New Jersey has maintained a list of HIV cases hold a valuable lesson for other states: There have been no breaches of confidentiality; other perils that critics warn about have not come to pass; and the benefits have been abundant.

Public-health officials say that New Jersey offers a textbook case of the value of registries of people with the AIDS virus. State officials used the register, for example, to quickly identify older people and young women as groups that needed special prevention and medical programs. The list of people with AIDS shows men outnumber women, by a 3-to-2 ratio. The list of people with HIV, however, shows almost an even split, with slightly more women than men.

Health officials in other states call the lists very useful. "We would be able to do things earlier if we had HIV reporting," said Dr. Richard Sun, chief of the HIV-AIDS epidemiology branch of the California Department of Health.

"AIDS reporting reflects infections that happened perhaps 10 years ago," Sun said, adding that it would be difficult to make plans for HIV prevention and care past the year 2000 with only AIDS data, and not HIV statistics also.

Even in New Jersey, HIV reporting has weaknesses. Although the list provides a fuller picture of where the virus is than the list of AIDS cases does, the officials say they estimate that at least 20,000 HIV-positive people have not come forward to be tested.

State officials say this is because many people are not aware they may be at risk of infection, not because of fear about HIV reporting. In fact, officials noted that if fear were a factor, the number of New Jerseyans going to be tested in New York and Pennsylvania, neighboring states where reporting is not mandated, would have risen. That number actually declined, according to government reports that track the states of residence.

Some advocates for people with AIDS say the system can lead to increased pressure, even intimidation, on clinics and counselors to get the names of sexual and needle-sharing contacts. But that criticism is not widespread.

That is in part because New Jersey has no powerhouse advocacy groups like the Gay Men's Health Crisis in New York. The AIDS service organizations are smaller and scattered throughout the state. Many groups say they are hard pressed to fully evaluate HIV reporting.

Many advocates for people with AIDS are vehemently opposed to name reporting, arguing that confidentiality concerns are far too important and codes should be used instead to further safeguard privacy. They say that name reporting would discourage a significant portion of the public from being tested, and would hobble efforts to effectively track HIV cases.

They also worry that a list of names in a government register would be used for other purposes. And though there is a frequent claim that confidentiality is rarely breached, these advocates say that agencies cannot control how personnel use the data.

Advocates point to a widely publicized case in Florida, in which a public-health worker lost his job over a list of the names of people with AIDS that was not kept secure. The computer disk with the list was mailed to two newspapers along with an anonymous letter.

These advocates contend that name reporting is not essential for monitoring the epidemic, targeting prevention, allocating AIDS funds and linking people to care. As an alternative, they say that public-health officials should devote as many resources to producing a viable coded system as they have in promoting name reporting.

Proponents of HIV reporting say such criticisms are mostly theoretical, while the benefits are concrete. They say the need for reporting has become more crucial with the advent of new treatments like multiple-drug therapies, which have allowed more people to stay in good health even if they have HIV.

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