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April 18, 2008
SURVEILLANCE 101
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Kates and Hall talk surveillance |
The Centers for Disease Control and Prevention (CDC) will no longer cite its decade-old statistic of 40,000 new HIV infections a year in the U.S.—but it will also not update the number until the much-and long-anticipated release of a new national estimate, expected some time this year.
The national infections estimate was one of the many hot topics discussed at the well-attended Federal AIDS Policy Partnership community forum on the "HIV/AIDS Surveillance and the CDC 2006 HIV/AIDS Surveillance Report" in Washington, D.C. on Monday. The CDC so botched the roll out of the new numbers in the report that the gathering was necessary to explain them to AIDS groups nationwide.
Chief of HIV Incidence and Case Surveillance Branch for the Division of HIV/AIDS Prevention Irene Hall admitted the CDC's mistake. "It's a time of transition, and the CDC has not done a good job of communicating these changes," Hall read from a statement.
A crowd of some 40 AIDS providers and advocates in Washington, D.C. and more than 100 on the phone were eager to make heads and tails of the 2006 HIV/AIDS Surveillance Report. Hall was joined by Chair of the HIV/AIDS Workgroup for the Council of State and Territorial Epidemiologists Nanette Benbow; Director of HIV Policy at the Kaiser Family Foundation Jennifer Kates; and Community HIV/AIDS Mobilization Project epidemiologist Walt Senterfitt (via speakerphone). The experts used the hullabaloo over the Surveillance report as a teachable moment, explaining everything from the difference between prevalence and incidence, the CDC's risk classification system, and which pages of the surveillance report contained the most useful information. To read their full presentations go to nastad.org.
As The Update reported two weeks ago the 2006 Surveillance report stated that newly reported infections in the U.S. rose dramatically from 35,537 in 2005 to 52,878 in 2006. But this wasn't actually a statistical increase in new infections, but the result of more states' data included for the first time in the CDC surveillance. In many cases the data wasn't even reported to the states in 2006. Previous years' data was just being added to the CDC system that year. For example, in Chicago, although there were 4,677 cases reported to the CDC in 2006, only 18 percent of them were actually diagnosed in 2006. Nonetheless, the seeming increase in numbers led to mass confusion and prompted some AIDS organizations to issue ill-informed statements that there has been an increase in new incidence in the U.S.
In actuality it is impossible to conjecture from the report if there is any national trend in new infections. A new national estimate to replace the aged 40,000 new infections should be coming out, though the CDC is mum about when.They are apparently waiting for a peer-reviewed process to approve the data.
While the CDC is stepping away from its notorious 40,000-a-year number pretty quick, Israel Nieves-Rivera with Urban Coalition for HIV/AIDS Prevention Services noted during the Q & A following the presentation that whatever number the CDC comes up with in the upcoming report, even though it will be just another estimate, has a lasting impact on the ground. "This 40,000 a year number has meant a lot at the community level, as far as funding and prevention efforts go," he said via phone. "All of us as advocates need to know how to interpret the data and use it. The data is going to become better and people shouldn't be shocked."
No identified risk?
The other topic that came up most often during the Q & A involved the controversy arounod "no identified risk." The CDC's HIV/AIDS data has only nine transmission categories that it tracks (in order of risk):
1. MSM (male-to-male sexual contact)
2. MSM/Injection drug use
3. IDU
4. Hemophilia
5. Heterosexual contact (male or female who has sexual partner who is IDU, MSM and/or HIV positive)
6. Transfusion
7. Occupational exposure
8. Perinatal exposure
9. NIR (no identified risk)
NIR includes a lot of people, particularly many women who are unaware that they have a high risk partner. This issue has long been troubling to advocates. The National Women's AIDS Collective formed with the goal of expanding the categories the CDC tracks.
Robin Webb, a Campaign to End AIDS member, called in from Mississippi and asked about NIR and how it affects MSM who don't choose to identify as such to their doctors. "Gay men of color often feel mistrustful of the government so they don't answer the question," he said. Benbow, an epidemiologist in Chicago, responded that in the Chicago health department, when a person is originally identified as NIR, the local health departments follow up with the health care provider to find out what the transmission risks are. Benbow also responded that epidemiologists working on a better system for identifying some of the people in the NIR category, but it's far from perfect.
San Francisco AIDS Foundation policy director Ernest Hopkins also asked about the meagerness of CDC data. "If a transgender person comes in, we're not able to note that fact and get the information we need," Hopkins said. Benbow responded that many localities do note this, and that once again, Chicago tracks if a person infected is transgender. But not every city or reporting juristdiction includes this level of detail, however, so CDC doesn't publish every category so as not to skew the data.
Hopkins told The Update, "I'm confident the CDC is asking for the right data, but it's hard to know because we've gotten so little of it," he said. "There needs to be a braoder discussion about data to the community."