Md. method of tracking HIV patients is faulted CDC study says data were lacking

some cases were missing

January 10, 1998|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

Maryland's system for tracking HIV patients without using names failed to gather crucial details about their cases and missed a significant proportion of patients entirely, according to a study released yesterday by the U.S. Centers for Disease Control and Prevention.

In the three-year study, researchers found that the code used as an identifier for each patient was incomplete as much as 30 percent to 40 percent of the time, making it impossible to gather critical data.

Only 25 percent to 50 percent of cases were reported to state health authorities, and CDC officials said no routine follow-up was done to gather basic information, including how people contracted the virus.

"Clearly, the system was not able to generate information on the majority of people who are HIV-infected," said Dr. Stan Lehman, a CDC epidemiologist and project officer for evaluation of the system to monitor those who test positive for the human immunodeficiency virus.

But Maryland's health secretary, Dr. Martin P. Wasserman, defended the system as a complicated one that is doing the job and continuously improving, while still protecting individuals' confidentiality.

AIDS advocates and a recent study from the American Civil Liberties Union joined Wasserman in calling it a model for other states.

The CDC report comes during a nationwide debate over how HIV-positive people should be tracked.

Thirty-one states report the names of HIV patients to confidential registries; three of those states count only pediatric cases.

Maryland and Texas use identifier codes, known as the "unique identifier" system, rather than names. In other states, lawmakers are arguing over which system is better.

Experts say it's a classic battle between community concerns and the privacy rights of individuals who fear discrimination.

No one disputes that the data should be collected, because the statistics translate into how dollars are spent on prevention and treatment.

As the epidemic changes and new drug combinations help people with HIV delay development of acquired immune deficiency syndrome for years, the HIV numbers have become more important. They're a sensitive barometer of how the virus is spreading and which groups are being affected.

The CDC study is part of an effort to evaluate these monitoring strategies and develop a national surveillance program.

Names are reported routinely in Maryland and around the country for those who suffer from full-blown AIDS and other infectious diseases such as tuberculosis. States have the authority to decide how they want to collect the information.

In Maryland, the coding system was designed in 1994 as a compromise after a two-year debate in the General Assembly. Health care providers are required to create the 12-digit identifying code -- made up of a combination of a patient's Social Security number, date of birth, race and gender.

Wasserman said some providers were unable to find Social Security numbers and used incomplete codes. Others, for reasons that are unclear, didn't report the cases. The complexity of the system may be partly to blame, officials said.

According to Wasserman, the system has steadily improved as providers are educated. One large public laboratory, which he would not identify, accounted for much of the problem because it did not report any cases during the study.

But Wasserman said the state's newest numbers, from last year, show officials collecting data on a par with states using the name-based system. He also noted that his department has been able to detect trends, including the increased number of women and young people contracting HIV.

Collecting names, some said, might scare people from being tested.

"You don't have to have a count of every individual in order to do planning. This is a very good model," said Michele Douglas, lobbyist for the AIDS Legislative Committee.

The ACLU report acknowledged the flaws in Maryland's system but described it as an "increasingly successful" alternative to names-based reporting.

NTC One Randallstown woman, though, fears that keeping it confidential may only foster the stigma.

"There comes a time in life when you really can't worry about the man in the grocery store knowing you have HIV," said Francine Scott, 49, who contracted the virus in 1987.

Pub Date: 1/10/98

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