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.
The New Jersey list, they note, has enabled the state to identify 1,308 infected mothers of newborns, greatly increasing the use of an anti-AIDS drug, AZT, to reduce the chance of infection in the newborn. Officials said an AIDS register would have identified only 24 mothers.
The list led authorities to Bridgeton, in southern New Jersey, where women in their 20s have a higher rate of HIV infection than the state's overall population. Health workers are beginning a $150,000-a-year prevention program there in community centers, schools and churches.
The list also revealed that men and women in their 50s account for a growing number of HIV cases, indicating that the disease will be a problem among the elderly. State officials took part in an educational seminar for people who care for the elderly in September, months before the federal Centers for Disease Control and Prevention in Atlanta reported similar findings for the nation.
The debate
Few experts now doubt that such benefits can result for HIV reporting, much in the way that government tracking of syphilis and tuberculosis cases has gained widespread acceptance. But officials in many states, including New York, are still locked in raging disagreements over how HIV reporting should be done and how the information will be used.
Massachusetts in February adopted an HIV reporting system that will use a code, not a person's name, in state records. "People who suffer from the disease have very good reason to fear a list of their names being kept," said Sean Fitzpatrick, a spokesman for the Massachusetts Department of Health.
"There was discrimination and stigma related to having AIDS in the '80s that was very real," Fitzpatrick explained, "and for those people who lived through that time, it is still very fresh in their memories."
In New York, the state AIDS Advisory Council, which advises the governor and the Legislature on policy, is united in the view that some sort of reporting is needed, but is bitterly divided on what method of reporting to use. The issue may be decided in the Legislature, where a host of HIV-related bills are pending, including one that would mandate name reporting and notification of partners. California is at a similar impasse.
Twenty-eight states now have HIV reporting of the names of infected adults and adolescents. But those states account for only a third of all AIDS cases.
Lawrence Gostin, a director of the Georgetown University-Johns Hopkins University Program on Law and Public Health and a member of the federal Centers for Disease Control and Prevention advisory committee, said, "New York and California are the two biggest states that don't have HIV reporting, and it would make a huge difference politically and from a public-health perspective if they move to HIV reporting."
To guide states, the CDC is to issue recommendations within months on how to carry out HIV reporting. The agency, in its own three-year evaluation, found that coded systems are difficult to link with individuals. Texas reached the same conclusion, scrapped its system after four years and is moving to name-based reporting.
The list
In late 1991, New Jersey became the state with the highest prevalence of AIDS cases in the nation to require that the names of people infected with HIV be reported to health authorities. Even some of the most vigilant advocates for infected people concede that there have been no breaches of confidentiality of the state HIV register.
"In all candor, some of the worst-case scenarios that we anticipated did not occur," said Ed Martone, executive director of the American Civil Liberties Union of New Jersey. "I have not heard of any inappropriate releasing of names, purposely or accidentally, so it seems to be working at this point."
HIV reporting is far from a burning issue in New Jersey. Timothy Thompson, who tested positive for HIV three years ago, said he had no idea there was such a policy. And he was recently elected to the Hudson County HIV-AIDS Services Planning Council, which sets local priorities on how to spend federal AIDS dollars.
"You sign stuff because they throw it in front of you," said Thompson, 35, who was attending a recent seminar on AIDS issues in Jersey City. "You're sitting there and you don't know what's going on."
In recent years, legal protections against discrimination have eased some confidentiality concerns. But a case before the U.S. Supreme Court could set new rules. The court is weighing arguments over whether the Americans With Disabilities Act covers those who are HIV-positive but show no symptoms of disease. New Jersey has another safeguard: If HIV records are disclosed improperly, residents can sue under the state's confidentiality law.
New Jersey residents can take an HIV test that does not involve needles. Health workers at many sites now have oral collection and testing kits, which include a lollipoplike device that is inserted between the cheek and the gum to collect saliva. It is placed in a vial and shipped to a state laboratory. Results are returned within two weeks.
Residents have the option of learning their HIV status without having their names reported, if they go to 15 state-financed HIV testing and counseling sites. The 200 residents a year who choose this option are identified by a number, and the state receives only demographic information like age, sex and race. And New Jersey's system of notifying partners is voluntary. Spouses or other partners of infected people are not notified without the consent of the infected person.
The state, though, makes clear that it wants more names for its list. "It's only common-sense health practice," said Michael Shumsky, program manager of the state's counseling and testing program. "Ultimately, we see the fruits."
The test
In a bleak neighborhood near the Port of Elizabeth, a favorite haunt of drug dealers and prostitutes, counselors at a state-sponsored testing site at Elizabeth General Medical Center stress to patients that consenting to have their names recorded is a way to link them to medical services.
"It helps them get into treatment faster," said Denise Smith, a registered nurse who is the site director. "And you can personalize it more for them."
At the Elizabeth site, on the second floor of a renovated red-brick monastery near the hospital, 82 people in 1997 were told they were infected. Positive reports are mailed to the state Health Department in Trenton. The form ends up in a small data-entry room on the fourth floor where a slate-gray door displays a prominent "Do Not Enter" sign.
Inside, three data-entry operators tap such information as each patient's name, address, race and patient history into computers as soft music plays on a portable radio. The paperwork is later filed in locked cabinets in a locked room.
The information is electronically sent to the HIV register in the tall computer, around the corner and down the hall, inside the chain-link cage, which was built in 1993 as a security precaution when the health agency moved into a building that is also occupied by the state Human Services Department.
The towering computer is not linked to any other computer system within the building. Only three state employees can get into the cage. The data-entry computers can talk to the tall computer in the cage only to find out whether an HIV case is a duplicate or to enter updated material.
Every other week, a protected file of HIV data is transmitted to the Centers for Disease Control, after a computer program strips any identifying information from the case report, like the name, address and telephone number.
The flaws
The HIV reporting system in New Jersey is only as good as the information it gets. According to epidemiological models, at least 20,000 infected people in New Jersey have not come forward to be tested or reported to the state, health officials acknowledge.
For every single AIDS case, there are 1.5 to 2.5 other HIV cases, according to estimates of HIV prevalence by the Centers for Disease Control. In New Jersey, the names of 13,205 HIV-positive people are listed in the state register, compared with 12,629 people with AIDS.
Pub Date: 8/09/98