D.C., Md. Face Cut In AIDS Funding
Grants to Be Linked To Use of Patients' Names to Track HIV

By David Brown
Washington Post Staff Writer
Monday, March 13, 2006

The District of Columbia and Maryland may lose millions of dollars in federal AIDS grants if they do not agree to have local health departments collect and record the names of people with newly diagnosed HIV infection.

The two jurisdictions are among about a dozen in the country that collect data about new HIV cases using coded identities, not names -- a strategy adopted two decades ago when HIV infection was untreatable and highly stigmatizing.

Many jurisdictions have since switched from "code-based" to "name-based" reporting of new cases. A name-based system is already used everywhere for AIDS, the advanced stage of HIV infection.

The Centers for Disease Control and Prevention says universal name-based reporting for all HIV cases -- not just AIDS -- is essential for tracking the epidemic in the United States. Having such a system is likely to become the key determinant of how $2.2 billion a year in federal AIDS grants is distributed to cities and states under the Ryan White CARE Act.

It is a time-honored practice for public health departments to record the names of people with specific communicable diseases. Doing so allows health officers to ensure that people are treated so they do not infect others, as in the case of tuberculosis, or to help trace patients' contacts so they can be treated, as with syphilis.

Today, HIV infection in people with no symptoms is the only reportable disease for which some U.S. health departments record cases using only codes, made from letters, birth dates, sex and sometimes elements of Social Security numbers.

Once sworn enemies of collecting the names of HIV-positive people, many activist organizations now either support it or do not oppose it. Some say health departments have shown they can keep the data confidential and, with the advent of effective drug treatments, now have a reason to contact infected people.

"There is this opportunity to do good -- of getting people to find out about their HIV status so they can begin treatment if it's appropriate," said Mark Cloutier, executive director of the San Francisco AIDS Foundation. The organization changed its position against name-based reporting five months ago.

A bill requiring name-based reporting of HIV passed one chamber of California's legislature in January and is before the other.

But this view is not universal.

Some people "will be driven away from the system if we cannot guarantee confidentiality. It may be the very people you want to most engage in testing and the health care system," said Denise McWilliams of the AIDS Action Committee of Massachusetts, which uses only codes.

The move to name-based reporting has long been in the wind. Last July, CDC Director Julie L. Gerberding sent a letter to state health departments saying -- twice, in italics -- that the agency "recommends" name-based reporting.

Several jurisdictions got the message -- Philadelphia switched in October, and Illinois and Maine changed in January. (Virginia already has name-based reporting.) Some of the holdouts want more time. It takes about three years to change systems, and they do not want to be penalized in the interim. Elsewhere, it is a matter of principle.

"We oppose it no matter how much time we are given," McWilliams said.

In the District and Maryland, which also use a coded system, health officials appear to be hedging their positions.

"The district follows the CDC guidelines, and consistent with that is currently exploring the transition to name-based reporting for HIV infection," said Marsha Martin, senior deputy director of the District Health Department. Any new system "must ensure full protection and absolute confidentiality. We must make certain the public feels that test has been met."

Michelle A. Gourdine, Maryland's deputy secretary of health, said last week that "there is a potential name-based reporting may be required, and if it is, Maryland will comply. We will do what we need to maintain our funding to fight this epidemic."

Joshua M. Sharfstein, Baltimore's new health commissioner, was more supportive. "I do see advantages to adopting a name-based system in Maryland," he said. "But it is essential to make sure there is a transition period, and that states should not be penalized during it."

Without a transition period in the new Ryan White provisions, the District and Maryland could lose several years of full funding even if they move to name-based reporting.

It takes about three years for a name-based HIV reporting system to get up and running. Consequently, the two jurisdictions would miss the law's fiscal 2007 deadline this fall even if they switched over now. Also, the change would require action by the D.C. Council and the Maryland General Assembly, neither of which has a proposal on the issue before it.

At risk is money used to help HIV-positive people in many ways -- paying for medical care and drugs, subsidizing housing and community clinics, and training health workers. Two-thirds of AIDS care in the United States is paid for by the federal government through Medicaid, Medicare and the Ryan White act.

"Ryan White is the payer of last resort. It is the safety net underneath the safety net," said Laura Hanen, director of government relations for the National Alliance of State and Territorial AIDS Directors.

Ryan White was a teenager in Kokomo, Ind., a hemophiliac who contracted the AIDS virus through a blood product. After White's condition was diagnosed in 1984, his school banned him as a health risk. In the early years of the epidemic, he became a symbol for AIDS discrimination and spoke publicly about how the infection could -- and could not -- be acquired.

White died in 1990 at 18.

How much money the District and Maryland might lose depends on what changes are adopted in the Ryan White reauthorization bill pending in the House and Senate. It could be as much as one-third.

For example, if the CDC rejects code-based counts of HIV cases -- and it has not accepted them from any state yet -- the District and Maryland would each lose 38 percent of the money they receive to help people buy AIDS drugs, including life-extending antiretrovirals. Baltimore would lose 30 percent, according to a report released in February by the Government Accountability Office.

One change favored by the Bush administration is making the number of HIV and AIDS cases the primary basis for distributing Ryan White money, eliminating a provision that would give special consideration to places such as Washington and Baltimore, where the epidemic began early. That would shift money to the South and West and increase the losses for places that do not adopt name-based reporting.

In that case, according to GAO estimates, the District would lose $8.8 million, or 19 percent, of its Ryan White funding. Maryland would lose $12.3 million (36 percent) and Baltimore would lose $3.1 million (16 percent).

Although code-based systems can enumerate cases inside a state, they do not allow the CDC to identify people who have been counted in more than one state -- an essential correction to the national data. Only if all states used the same code would that be possible. But in the 11 states that still use codes, there are 10 variations.

Furthermore, one study showed that code-based reporting costs 50 percent more per case, largely because of the labor that health departments expend helping doctors and hospitals code cases properly.

"We have a good code-based system. It's called the person's name," said Matthew T. McKenna, a physician and epidemiologist at the CDC's division of AIDS.

Does name-based reporting have a chilling effect on people coming forward to be tested? A study of CDC-funded HIV counseling and testing sites in New York suggests not. In the two years after that state's name-based system took effect in 2000, the number of HIV tests did not decrease and the percentage of anonymous tests did not increase.