Tuesday, August 26, 2008

CA Office of AIDS: HIV Up, Down or Stable?

When the Centers for Disease Control and Prevention earlier this month released newly revised estimates for number of HIV infections in recent years, one state was glaringly omitted from the federal estimates -- California. Because the state for years refused to implement names-based HIV reporting regulations, and we were stuck with a highly unreliable unique-identifier-based system, our HIV incidence rate is nearly impossible to determine.

Since the release of the new national stats, showing supposed increases, I've been calling and emailing the state Office of AIDS, requesting HIV data because I'm trying to determine if California's HIV rate of new infections has been up, down or stable in the past few years.

I've also complained to Dr. Gil Chavez, head of the CA Department of Communicable Diseases, which oversees the Office of AIDS, that the AIDS division needs to forthwith do a better job of communicating with the public about its activities in the past twelve months. After a lengthy phone conversation with him last week, in which I laid out specific areas I want the state to address, he promised to send me follow up note. I'm please to share with you his reply below.

And one of the state's HIV epidemiologists, who is handling my request for tons more HIV stats and data, sent me an email, see below, detailing when I'm likely to have the requested public information.

After several weeks of communications with CA health officials in Sacramento, discussions with AIDS activists in San Francisco, and lots of cruising around web sites for the many HIV/AIDS service organizations in the state and local health departments, I've got an uneasy feeling that too many powerful institutions have allowed complacency and invisibility to reign at the state level.

I can't locate any letters or news releases from AIDS groups or health departments questioning the lack of reliable HIV stats for California and no real engagement with the affected communities and public on the part of the Office of AIDS.

Who is served when this great state, in year 27 of the American AIDS epidemic, can't begin to tell the public if HIV infections are declining or rising? How did the California HIV/AIDS community get to the point where, despite massive amounts of public and private funding and ultra-modern technology, the HIV rate can't be determined?

It's a shameful blot upon this state and AIDS Inc that HIV epidemiology is woefully and criminally inadequate. This situation must change.

This is the letter from the HIV epi expert:


After our telephone conversation this morning (August 21, 2008), your request should actually have been for two tables. One for the number of monthly and yearly cases of HIV Non-Name Code Based data (July 2002 through March 2006) and a second for the number of monthly and yearly cases of HIV Name Based data (April 2006 through July 2008). I will put the appropriate notes on each table.

I will attempt to have them to you within the next week but, as we discussed, it may be ten working days.

Winnie Dysle

And here is the note from the head of communicable diseases division in Sacramento:

Mr. Petrelis,

I would like to take this opportunity to thank you for taking the time to give me your perspective on our HIV/ADIS programs last week. You clearly have an excellent pulse of the issues facing people living with HIV/AIDS and I welcome your ideas and suggestions on how to better share information on our programs, accomplishments, data, and ideas with the community.

As I indicated to you over the phone, we are fortunate to have someone of the caliber of Michelle Roland, MD at the helm of our state HIV/AIDS activities. She is a visionary leader with immense clinical expertise. You will be pleased to see her progress forward over the next few years.

I discussed with Dr. Roland your request for information on the five major areas listed below:

1. Posting of agendas and minutes for CHPG meetings.
2. Post HIV/AIDS data on our website by race/ethnicity, specifically for African Americans.
3. Provide a response of the California impact of the August 3, 2008, JAMA article on National HIV Incidence Estimates. Do we plan to revise our incidence and prevalence estimates?
4. Provide more level of sub-population detail on our HIV/AIDS data.
5. Provide an opportunity for a Southern and a Northern California Town Hall meeting for people living with HIV/AIDS to hear what the OOA is doing and get community input.

Dr. Roland is preparing a detail response to your request. You will be pleased to hear that she was already moving to address all the points you raised. Much of the information you requested is already available but we need to make it easier for people to find. Please expect to hear from Dr. Roland over the next few days. Feel free to call her at 916-449-xxxx if you want to discuss your request in more detail or if you need additional information.

Dr. Gil Chavez

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