The AIDS virus "continues its relentless march into and through our population," said one oft-quoted government AIDS specialist. "HIV continues to spread through the population essentially unabated," declared a Washington Post article, leaving "the reality of an increasingly infected populace."
The gloom concerned a new Centers for Disease Control and Prevention (CDC) study of HIV surveillance data. "Were not seeing good news [because] we are not seeing a substantial decline" in infections, said the author of the study. Commentators and congressmen have used the report to blast the Clinton Administration decision to not fund needle exchange programs.
The CDC study cast a pall over all the recent good news. AIDS deaths dropped 21 percent in 1996, and an additional 44 percent in the first half of 1997. The number of AIDS cases reported dropped six percent in the first half of 1997.
Moreover, theres good reason to think that the bad news is wrong. Thats because the CDCs methodology and author Patricia Flemings report is utterly bankrupt, as a different CDC study indicates and as I found when I contacted the same public health departments whence she drew her data.
First, lets get straight what the CDC report said, as opposed to what you might have heard.
Further confusing matters is that the AIDS Policy Center for Children, Youth & Families (which receives federal funds) announced, "New figures released today by CDC show rapidly rising rates of HIV infection in women, minorities and youth ages 13-24, despite declines in AIDS cases nationwide."
The headline of an Atlanta Journal story read: "HIV infections on the rise for women, Hispanics." In fact, the study only looked at overall trends and trends for those age 13-24. Far from "rapidly rising," infections in the 13-24 group declined somewhat. There were no data on changes of infection rates for any other category, including women or Hispanics. "They study didnt even look for those," CDC press officer Terry Hammond told me.
The main problem with Flemings report that the data are drawn neither from the solid AIDS reporting system nor on random sampling, but rather individual reports of 25 states. It simply assumes that during the two-and-one-half years it covers (January 1994-June 1997) there has been no change in HIV reporting.
But doesnt it make sense that health departments would be improving their surveillance systems? More important, doesnt it seem that during a time when new drug therapies have challenged the notion that AIDS is a death sentence, more high-risk people would get tested, thereby raising the number of infections reported? Yes. Twice.
I contacted six state health departments. Officials at each indicated they believed they were picking up a higher percentage of HIV infections than just a few years earlier.
Consider Colorado, which originally like many other states was severely hampered in its HIV monitoring by the ready availability of anonymous HIV-antibody testing. No name meant no surveillance. But surveillance began improving dramatically in recent years, says Kenneth Gershman, M.D., Manager of the HIV/STD Surveillance Program for the states Department of Health, when new types of tests became available.
The antibody test only indicates infection. The newer ones — such as the CD4 test, which measures the number of a type of white blood cell, and the viral load test, which measures how much HIV your blood contains — roughly indicate how far the disease has progressed. There are no anonymous test sites for these and "results indicative of HIV infection must be reported by laboratories," says Dr. Gershman. These "really facilitate a complete reporting system."
Other states have improved surveillance through streamlining. Formerly, says Utah Department of Health HIV/AIDS director Edie Sidle, "We had different pockets of reporting. Now a lot of our care is centered at the University of Utah Infectious Disease Clinic so that makes reporting easier." Still other states, like Colorado and Michigan, have become far more aggressive in going out and getting the data from care-givers instead of simply letting it come in.
State officials repeatedly told me that more high-risk people are also coming forward for testing. One reason is growing confidence in confidentiality. Early fears that one day youd be diagnosed with HIV or AIDS and the next day your boss would know about it have practically disappeared.
Yet clearly the most important reason more such persons are getting tested and hence registered in the surveillance system is that as Utahs Sidle says, "the new therapies have really changed things." As a result, says Denise Boyd, head of HIV/AIDS surveillance for the Arizona Department of Health Services, "In the last two years theres been great excitement."
Richard Holmes of Alabamas Department of Public Health, HIV/AIDS Division, notes that in his states HIV tests nearly doubled from 1992 to 1997, from 57,000 to 109,000. Likewise, New Jersey saw HIV tests rise from 45,000 in 1992 to 65,000 in 1997, according to Department of Health and Senior Services Public Information Officer Tom Breslin.
Other states, such as Michigan, havent seen their test numbers go up. But their spokesman told me he thinks theyre seeing an increase in the percentage of truly high-risk persons getting tested, rather than the panicky people who flooded clinics after Magic Johnsons announcement. "Instead of quantity, I would say we are doing a better job of getting at persons at highest risk," says Michigan Department of Community Health Chief Medical Examiner Dave Johnson, M.D.
A new type of HIV antibody test has facilitated this. Called "OraSure," rather than requiring blood-drawing it is simply placed in the mouth where it soaks up secretions. Intravenous drug users are "much more inclined towards it because theres less chance of their being exposed for their drug usage" by giving blood, New Jerseys Breslin told me. OraSure went into use in January, 1997 six months before the close of Flemings study.
Apparently advances in AIDS therapy have not only brought infected persons "in from the cold," but have invigorated health care workers to seek out and test them. Nobody likes saying, "Youve got a horrible, terminal disease thats incurable. And by the way, dont ever have sex again." Outreach workers are "very much driven by the news" of the effectiveness of the new drugs, says Arizonas Boyd.
Yet the CDC neednt go to the states to confirm what is so intuitively obvious. It could have gone down the hall. Over the last few years, the CDCs own Stan Lehman has been conducting the HIV Testing Survey, now completed and awaiting publication. Lehman sought out high-risk groups at gay bars, STD clinics, and places where intravenous drug abusers congregate. He found 75 percent of these people have been tested. "Thats more than people have assumed," Lehman says. "A lot of times they estimate its just 50 percent [of high-risk] people.
"It seems that a lot more people are being tested now and the big change is the introduction of the therapies," says Lehman. "Its having a powerful effect on our HIV and AIDS data surveillance nationwide." As one would guess, his survey found the main reason people avoided or delayed tests was fear. "The effective new therapies ought to help that," Lehman said.
If new developments are skewing the infection data upward, could they also be skewing it within the categories? Yes.
For example, much has been made of Flemings finding that fully a third of the new infections are in women, even though the latest AIDS data show a somewhat smaller 27 percent of AIDS cases reported in 1997 were female. But these female infections assuredly reflect at least in part a requirement for receiving federal AIDS funds under the Ryan White Reauthorization Act of 1996. It demands that states show great progress in reducing the number of babies born with AIDS.
This means identifying HIV-positive women of child-bearing age and either discouraging them from having children or offering them AZT therapy during the course of their pregnancy, greatly reducing the chance of the virus being passed on. If a state wants to hold onto those funds, it must aggressively find and test such women.
"Weve become very active in increasing pre-natal HIV surveillance," to make sure the Ryan White funds flowing, Michigans Johnson told me. "Weve added staff specifically" for this reason.
We cannot know how much HIV infections have declined, other than to say it must be more than the CDC claims. What we DO know is that somehow it never occurred to an agency packed with epidemiologists that there might be a change in HIV reporting during a period of such dramatic developments, that they couldnt make a few calls to state health departments like I did, and that they that they somehow didnt know about a major study going on right under their noses.
That or the agency that has been exaggerating and "democratizing" the AIDS epidemic since 1986 insisting that we are all at risk — is still at it. And by the way, the man who directed the CDC while that report was in preparation was David Satcher, M.D. Hes our new surgeon general.
Read Michael Fumentos additional work on AIDS.