Is Julie Gerberding Getting Advice from Steve Jobs?

I guess I should let it go but I'm still annoyed that CDC and JAMA officials treated the roll out of new HIV incidence estimates like Steve Jobs launching a new iPhone.

This product launch offers "consumers" scarcely any new fun features or software improvements, and if we allow the alarming new data to fall into oblivion, it will also fail to give the fight against HIV/AIDS any meaningful utility.

For months, AIDS advocates called for the public release of the data, which CDC admitted this weekend it had finalized in October 2007. An earlier release might have given the Bush administration second thoughts about requesting a $1 million decrease for CDC's domestic HIV prevention programs; spurred presidential candidates to talk more readily about HIV/AIDS in the U.S.; persuaded media pundits and debate moderators to quiz candidates on plans to end the epidemic; led Congress to pass even one of the dozen domestic HIV prevention bills languishing on Capitol Hill or motivated appropriators to finally boost HIV prevention funding or end long-held restrictions on how funding can be used.

No, instead the cult of embargoes prevailed, with no account to the burgeoning public health crisis the very paper in question describes.

With great annoyance, JAMA lifted its embargo on the article one day ahead of its planned release and CDC rushed a press conference, ensuring that most GLBT and community media -- as well as many mainstream outlets -- received notice so late as to not participate.

For those of us living with HIV, the data is so much more than fancy new de-tuned assays or sophisticated statistical modeling. Behind each of the 56,300 estimated annual cases is a person whose life changed radically and forever. There's a narrative of loss behind the back calculation that traces the darkest days of this human crisis from its frightening beginnings to the shameful unresponsiveness of government and medical personnel to the grassroots responses required to care for those whom society was unwilling to touch or help or mourn.

Reading the Fine Print

The data tells an alarming if not surprising story of the challenges before us and the inadequacy of all our past responses and lack of responses.

There are also persistent questions raised by the article that I hope CDC addresses or remedies without the protracted delays that brought us to this point:

1. For data documenting severe disparities among African Americans and among men who have sex with men, why is there no discourse or official figures of infections that cross both of these definitions?  One can certainly imply significant overlap, but why presume it when the data could describe it definitely and, one would hope, with greater accuracy?

2. Why describe HIV infection estimates and conduct back-calculations representative of all U.S. jurisdictions except Puerto Rico, the U.S. Virgin Islands, and Guam? That's odd, don't you think? Might the severely elevated infections in communities of color (among 2006 infections, 45% were among Black individuals and 17% were among Hispanics) actually be HIGHER among Black individuals, Hispanics, and Asian Pacific Islanders if these U.S. territories were included in the analysis? Inquiring minds would like to know.

Incidentally, CDC was forced to adjust its 2006 estimates for HIV/AIDS diagnoses among Hispanics earlier this year when advocates noted that Puerto Rican cases had not been classified as Hispanics. Doing so raised the proportion of U.S. diagnoses among Latinos from 17% to 22%--a significant increase that gave the U.S. a more accurate picture.

3. There are probably many valid explanations but I found it curious to see cited an article -- again in JAMA -- from 1998 by Rob Janssen (then a top HIV programs official at the CDC) describing "new testing strategy to detect early HIV-1 infection for use in incidence estimates and for clinical and prevention purposes." Check it out: it's citation #9. So, ten years ago CDC knew how to develop incidence estimates and we are reaping the benefits of that new knowledge just now?

There are probably many other anomalies that need further investigation so please post them in the comments.