Fifteen Lawmakers Send Letter to CDC Director Requesting Agency Accept Code-Based HIV Data
Fifteen lawmakers last week sent a letter to CDC Director Julie Gerberding calling for the agency to accept code-based HIV data from the 15 states that do not use names-based reporting systems, the AP/San Francisco Chronicle reports (Werner, AP/San Francisco Chronicle, 5/8). Currently, all 50 states have HIV case reporting systems in place. However, CDC does not accept HIV statistics from the 15 states that use code-based systems because the agency says it is too difficult to ensure that reported cases are not duplicated. Some lawmakers have suggested that funding for programs under the Ryan White CARE Act -- which provides federal funds to states and cities to help low-income people living with HIV/AIDS access care and prevention services -- might be better allocated using each area's number of HIV-positive people. However, a recent Institute of Medicine report found that HIV-reporting mechanisms at state and local levels are too incomplete and may be too inaccurate to correctly determine funding using HIV data instead of AIDS data as the main criterion (Kaiser Daily HIV/AIDS Report, 11/10/03). The letter was sent by Democratic Sens. Dianne Feinstein (Calif.), Edward Kennedy (Mass.), Barbara Mikulski (Md.), Patty Murray (Wash.), Jack Reed (R.I.), Paul Sarbanes (Md.) and Barbara Boxer (Calif.), House Minority Leader Nancy Pelosi (Calif.) and Democratic Reps. Henry Waxman (Calif.), Sherrod Brown (Ohio), Elijah Cummings (Md.), Barney Frank (Mass.), Eleanor Holmes Norton (Washington, D.C.) and Jan Schakowsky (Ill.). Sen. James Jeffords (I-Vt.) also signed the letter.
Lawmakers in the letter called on CDC to "take immediate steps to accept HIV data from all states into the national HIV/AIDS reporting database, including the incorporation of HIV data from non-named reporting states." Currently, California, Connecticut, the District of Columbia, Hawaii, Illinois, Maryland, Massachusetts, New Hampshire, Rhode Island and Vermont use a code-based system, and Delaware, Maine, Montana, Oregon and Washington use a "name-to-code" based HIV reporting system, according to a Feinstein release. Citing CDC's "HIV/AIDS Surveillance Report 2002," the letter said that the 15 code-based jurisdictions accounted for 28.7% of all U.S. AIDS cases in 2002. The letter continues, "CDC's refusal to accept and utilize code-based data presents an inaccurate picture of the nation's epidemic and, in doing so, undermines the national effort to win the battle against HIV/AIDS. National surveillance data is critical to federal, state and local governments and communities targeting the delivery of HIV prevention, care and treatment." The letter concluded, "[B]y using AIDS cases as the nation's primary measure of the HIV/AIDS epidemic and HIV cases from a limited number of name-based states as a secondary measure, we are not only underestimating the number of people living with the disease, we are using a skewed national estimate of the epidemic to allocate scarce resources."
The lawmakers asked CDC to consider what actions and its timeframe for evaluating HIV data from code-based states and incorporating the statistics into national data sets. The lawmakers also asked the agency to explain the steps it is taking to "strengthen state HIV surveillance" because states will need "adequate resources for continued implementation of core HIV surveillance systems." In addition, the lawmakers called on CDC to provide information about the technical assistance it is offering to code-based states to "strengthen their capacity to meet national performance standards for completeness and accuracy" (Feinstein release, 5/7). CDC spokesperson Jessica Frickey said that data from states without names-based HIV reporting systems have "not proven up to the agency's standards of reliability," according to the AP/Chronicle. She added that the agency is examining ways to accept data from all states, including those that do not collect patients' names, but she did not say when CDC would be able to do so, the AP/Chronicle reports. "Name-based systems are the most likely to meet the performance standards and provide the quality of data necessary. CDC guidelines advised state and local surveillance programs to use name-based systems," Frickey said, adding, "If the data meets the standards of what CDC needs they would be included" (AP/San Francisco Chronicle, 5/8).