HIV patient names will be tracked in all 50 states by year's end

CHICAGO -- The names of people infected with HIV will be tracked in all 50 states by the end of 2007, marking a victory for federal health officials and a quiet defeat for AIDS advocates who wanted to keep patients' names out of state databases.

Vermont, Maryland and Hawaii, the last states not tracking the names of HIV-positive people, are quickly moving toward adopting names-based surveillance. Eight other states and Washington, D.C., began collecting the names of HIV patients last year, and Massachusetts switched in January.

The states are bowing to federal pressure so they won't lose money for medications and health services for patients.

This is the first year federal funding has been tied to names-based surveillance of HIV. More than $1.4 billion in federal money will be distributed this fiscal year based on new formulas that include numbers of people with HIV counted by states using names. In some states, including Illinois, millions of dollars are at stake.

That's why advocates say they've quit fighting -- although they still worry that collecting names will deter some people from getting tested and seeking treatment, and about the possibility of names being released due to security breaches.

"I have patients who are very high-profile individuals -- physicians in practice, people who are politicians" who don't want their real names reported, said Dr. Dan Berger, medical director of NorthStar Healthcare in Chicago's Lincoln Park.

In a 2005 security breach in Palm Beach County, Fla., the names of 6,500 HIV and AIDS patients were mistakenly e-mailed to 800 county health workers. Other security breaches have occurred in California and Kentucky.

Some worry that names-based reporting could have the greatest effect on whether minorities and the poor get tested and treated because they may be less likely to trust the government to keep their names secret.

In a low-income Chicago neighborhood 10 miles from Berger's office, patients now are told they must release their names to the state to get medications. Bruce Jackson, director of the Gift House, which offers HIV testing and counseling in southwest Chicago, said some clients are apprehensive, fearing their families or friends will find out they're infected.

Reporting names "can affect if (disadvantaged people) come back for care and it can affect how they describe to other people their experience of getting tested," said Catherine Hanssens of New York's Center for HIV Law and Policy.

There are an estimated 40,000 new HIV infections annually in the United States.

Methods of tracking cases varied from state to state until recently. Some states, including Illinois, and the city of Philadelphia previously tracked HIV with identifying codes that preserved anonymity and were unique to each patient.

Illinois' code-based system was "instituted to protect people's confidentiality because of fears of stigmatization and potential disclosure to insurance companies and family members," said Dr. William Wong, medical director of the AIDS division of the Chicago Department of Public Health.

Illinois started names-based HIV surveillance Jan. 1, 2006, because of federal pressure.

The U.S. Centers for Disease Control and Prevention rejected code-based systems after finding they could lead to double-counting and were cumbersome for health care providers. The CDC announced its support for names-based HIV reporting in 1999, and strengthened that to a recommendation in 2005.

"After many evaluations of code-based systems, it became clear that those systems do not meet CDC standards for HIV data," said Dr. Timothy Mastro, deputy director of the Division for HIV/AIDS Prevention at the CDC. Diseases such as syphilis, tuberculosis and AIDS already were tracked by patient names, he said, making HIV the exception.

Starting this fiscal year, the CDC's HIV numbers were used, along with AIDS case numbers, by the U.S. Department of Health and Human Services to calculate funding to cities and states receiving formula grants through the Ryan White CARE Act, the government's largest HIV/AIDS program. The formulas include only HIV data from states using names-based surveillance.

AIDS advocates, who argued against collecting names of HIV patients in the 1990s, preferred code-based systems to protect the confidentiality of patients and said the CDC ignored evidence that codes could work.

"I've not so much changed my opinion as surrendered," said Ron Johnson, deputy executive director of Aids Action in Washington, D.C. "I still believe code-based reporting is valid and is preferable for HIV reporting. It, for all practical purposes, has become a losing battle."

In Vermont, AIDS advocates succeeded in getting tough security measures written into a bill that would switch the state from a code-based to a names-based surveillance system, said AIDS advocate and Vermont resident Terje Anderson.

The bill prohibits use of networked computers and laptops to store or process any data identifying people with HIV, and allows civil lawsuits for malicious disclosure of that information.

Funding shifts caused by adding the HIV cases to the Ryan White funding formula won't become clear until HRSA makes its awards to cities and states later this year, said Murray Penner of the National Alliance of State and Territorial AIDS Directors.

Housing grants to people with AIDS may be next to use the HIV case numbers to drive funding. The Department of Housing and Urban Development has proposed the change to Congress for fiscal year 2008, said David Vos director of HIV/AIDS housing for HUD.

For now, public health officials are trying to reassure people who test positive for HIV that stiff security measures protect state databases of names.

In Illinois, staff members handling names take an oath of confidentiality and get special training. The names are in a stand-alone computer system, behind locked doors.

"I've never been in that room where they're kept. The security is that tight," said Tom Hughes, a deputy director with the Illinois Department of Public Health.

Participating states strip names and other identifying information from their HIV reports before transmitting them in an encrypted form to the CDC, Hughes and other health officials said.

Berger, the Chicago doctor, said he has told some patients not to give him their real names. He has enrolled patients anonymously in medical studies of HIV drugs without reporting their names, he said.

Health officials said it's impossible to predict how many doctors and patients are finding ways of keeping names out of databases, and whether HIV case numbers will show any decline that can be connected to names-based reporting.

In Illinois, reports to the state of new HIV cases dropped by 14 percent from 2005, the last year of code-based reporting, to 2006, the first year the state used a names-based system. But there was an 8 percent drop in new HIV cases the prior year, long before the change to a names-based system.

With better drugs forestalling the progression of HIV to AIDS, people with no apparent symptoms face knowing their names will be on a state list for decades -- protected by security measures, but nevertheless subject to exposure.

"In many ways, it's a different world today than the world that motivated people to insist on anonymous systems for tracking HIV," said Suzanne Goldberg, director of the Sexuality and Gender Law Clinic at Columbia Law School in New York. "A lot has changed, but unfortunately not enough."