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More accurate reporting system could increase funding for research
The Centers for Disease Control and Prevention in Atlanta now recommends that all states and territories include HIV cases in their AIDS surveillance programs, a move that is expected to add 200,000 people diagnosed with HIV to the overall surveillance count. The change could prompt many more states to begin to collect the information within the next two years.
Thirty-two states already perform HIV surveillance using the same reporting system for both HIV and AIDS cases. Three of these have collected only pediatric HIV/AIDS information. The CDC’s guidelines are recommendations, and states can decide for themselves whether to conduct HIV surveillance. There are no penalties for states that decide not to follow the recommendations.
"Most of the states will be expanding their existing AIDS surveillance infrastructure to include persons with HIV," says Patricia Fleming, PhD, chief of the HIV/AIDS surveillance branch division of the CDC’s Division of HIV/AIDS Prevention.
The HIV reporting will come from hospital inpatient settings, private providers, and laboratories that conduct diagnostic and CD4 count tests.
CDC officials estimate the greatest initial impact will be that an additional 200,000 people diagnosed with HIV will be added to the HIV/AIDS surveillance count.
"We think that’s a conservative estimate of the number of people who are infected with HIV and have been diagnosed," Fleming says.
States now report 300,000 are living with AIDS. And the states that perform HIV surveillance report that about 100,000 people are living with HIV, Fleming says. (See HIV surveillance charts, pp. 14-16.)
A more accurate reporting system could mean increased federal funding for HIV/AIDS research and a more detailed picture of how much the disease has spread. "This will allow us to target our efforts to reduce HIV infections and to reduce morbidity and mortality," Fleming adds.
For example, AIDS data underestimate the infection rate of youths because the number of young people diagnosed with AIDS is much lower than the number of young people infected with HIV, Fleming explains.
"What states have found is that by having data on young people with HIV, they are better able to effectively target interventions, treatment, referrals, and prevention to young people," she adds.
But have the CDC’s guidelines arrived soon enough?
"We’ve been waiting for these recommendations for over a year, and the jurisdictions have been very frustrated that they haven’t been out even for comment until now," says Julie Scofield, executive director of the National Alliance of State and Territorial AIDS Directors in Washington, DC.
Fleming says the CDC has been working on the draft of HIV surveillance guidelines since May 1997. CDC officials have met with public health groups and community groups to discuss the recommendations. The research on which the guidelines are based was started many years ago.
The CDC also has been criticized for recommending that states adopt name-reporting methods rather than non-name coding systems.
The Washington, DC-based advocacy group AIDS Action announced in December that the group opposes name reporting because it might cause some at-risk people to avoid being tested.
AIDS Action spokesman Steven Fisher publicly denounced names reporting, calling it a disaster: "Without better access to health care, names reporting is the Titanic all over again — we’re creating passenger lists without providing enough lifeboats."
The CDC is advising states to report HIV patients’ names because evaluations have shown that names reporting systems perform well, Fleming says. "Some states may choose to adopt coded identifiers in lieu of names, and we’ll work with those states to try to ensure the level of performance is high enough to obtain accurate, high-quality data," Fleming adds.
Texas, New York, and Maryland had used unique identifiers, but Texas found that the system did not perform well and has changed its law to use names, beginning Jan. 1, 1999. New York also is switching to using patient names this year, Fleming says.
The first state to begin HIV surveillance was New Jersey in 1991. The state has used names reporting from the very beginning, and officials have found that names reporting for HIV cases works very well, says Sindy Paul, MD, MPH, medical director of the Division of AIDS Prevention and Control of the New Jersey Department of Health and Senior Services in Trenton. People receive counseling with their HIV testing, and they’re assured that their names will be kept confidential.
"We have a steel cage around our computer," Paul says. "We have criminal penalties for breaches of confidentiality by anyone, and that was put in before names were collected."
Since the state began names reporting of HIV/AIDS patients, there have been fewer New Jersey residents going to New York for HIV testing. So that trend obviously was not affected, Paul adds.
"The CDC has found that a concern with names reporting is rarely mentioned as a deterrent for people going for testing and counseling services," she says.
However, New Jersey residents who would like to receive anonymous testing may do so. "We have an anonymous testing option, and people can go to a publicly funded site and be tested at no charge, and we’d receive an anonymous report," Paul says.
HIV surveillance and names reporting have been tremendously helpful in finding accurate trends with regard to case demographics and infection rates, Paul says.
For example, New Jersey’s AIDS cases listed through Sept. 30, 1998, indicate that 61% of the cases are men and 39% are women. However, the HIV cases listed for the same period show that 52% of the cases are women and 48% are men, Paul says. This type of statistical difference in case demographics can affect how state health officials target prevention efforts. The HIV data indicate that prevention efforts need to be divided equally between men and women.
New Jersey AIDS prevention officials evaluate prevention of perinatal HIV transmission through identification of HIV-positive mothers and their babies. By having the mothers’ names, the state knows which mothers received AZT during their pregnancy or neonatal period. They also can follow the child to find out whether the child became infected with HIV.
Paul says HIV surveillance data also can be used to target mutations and changes in the virus.
"You can identify from surveillance who would be a potential carrier, [and] who comes from a country where a particular strain is endemic," she says. "We get the consent of the patient, and then we interview them and send specimens to the CDC."
States also can use HIV surveillance, along with input from community planning groups, to develop a community prevention planning process. New Jersey used its HIV statistics to create a priority list of people to target for AIDS information.
New Jersey obtains its information from laboratories and medical providers, who send HIV/AIDS cases directly to the state health department. "We do active surveillance, in which our staff go out to providers, hospitals, and physicians to complete the report forms," Paul says.
The state verifies the completeness of its HIV reporting by matching its own statistics with other databases, such as AIDS drugs distribution program databases. Also, the state can minimize the number of duplications in its database with names reporting. "We match close to 90%," Paul says.
For states that would like to conduct HIV surveillance and names reporting, the CDC’s guidelines could serve as a benchmark for how to conduct such programs. (See summary of CDC guidelines, at right.)
It will be difficult for the CDC to evaluate HIV infection nationwide without the states’ surveillance, Fleming says. "We think it is in the best interest of public health that we do this surveillance nationwide," she adds.
Scofield asserts that states will need more federal funds to help them handle the increased surveillance efforts.
Current funding, which was $53 million to all states and territories in 1997, is too little money, she adds.
"The overall CDC HIV prevention budget is over $600 million, and $53 million for state surveillance, which is the backbone of monitoring the epidemic, is a very small proportion," Scofield says.