Let me put two disclosures up at the front of this post. I'm a person living with HIV who didn't have good numbers at all, except for one vital measurement, on his last labs. Everything to do with HIV research at NIH and what drugs it recommends I take to stay alive are of vital interest to me. Second, as a columnist for POZ magazine, I'd eventually like to write a column about the NIH HIV drug advisory panel.
That being said, let the record show today marks the one-year anniversary since I filed a FOIA request for documents from my federal government, documents created with my tax dollars. See the full request below.
It's an effing shame that the NIH HIV drug panel is not already open to the PWA community, our allies and advocates, and that the records created from the panel, created mind you with our tax dollars, are not already in the public sphere.
I received a reply today from the Public Health Service, parent agency to NIAID, NIH, HHS, all the sub-agencies where my FOIA requested been bounced and pass on to someone else.
Nice to hear from the PHS FOIA person, but it is incredibly depressing to learn my request, after being shuffled from NIAID FOIA office to NIH FOIA office to HHS FOIA office and then PHS FOIA office is now before the Office of General Counsel for PHS.
Just how many hoops is one person with AIDS/citizen of USA supposed to jump through before he gets public records that may help him make the most informed health choices with his doctors and other caregivers?
Rest assured, this year-long delay will be on the agenda at the OARAC meeting at NIH on April 19.
Click here and also here for my previous posts on the documents I want and battles with NIAID/NIH.
This is the email from PHS FOIA that came today:
In a message dated 4/3/2007 8:37:22 A.M. Pacific Daylight Time,
I apologize for the delay in responding to the message you left on my office voice-mail regarding the processing of your appeal. Because of our time difference, I thought email was the best way to respond in this instance. I do understand your urgency to get a final response from the Agency. Please be assured that I am working as quickly as possible to provide you with a final response.
Your appeal is now being reviewed by the Office of the General Counsel (OGC). I have advised OGC that you are anxious to receive a final response and have asked them to expedite their review. After I receive the file back from OGC, if there are no changes or questions that need to be resolved, I will forward the file to the Deputy Assistant Secretary's office for final review and signature.
I anticipate that it will be at least another two weeks before you receive a final agency decision. If you have any questions regarding the continued processing of your appeal, please do not hesitate to contact me. And, again, I apologize for my delay in responding to your telephone message.
Division of FOIA Services
And this is my year-old original FOIA request:
April 3, 2006
Freedom of Information Office, NIH
Building 31, Room 5B35
9000 Rockville Pike
Bethesda, MD 20892
Re: Panel on Clinical Practices for Treatment of HIV Infection files
Dear Sir or Madam:
Under the provisions of the Freedom of Information Act, I hereby request copies of, or access to, the following documents and records pertaining to the Panel on Clinical Practices for Treatment of HIV Infection, hereafter referred to as the “Panel,” a component of the National Institutes of Health’s Office of AIDS Research Advisory Council.
Going as far back to 1995 and up to the date of letter, I request copies of the following records from the Panel:
All meeting agendas and print materials distributed to Panel members;
All minutes from any and all Panel meetings;
All transcripts of the Panel’s monthly teleconferences.
I am a news blogger and AIDS journalist working on important HIV/AIDS stories of crucial interest to the American public and I ask that you grant this FOIA request expedited processing status. Additionally, as a working reporter, I ask that searching and copying costs be waived.
If you have questions or need clarification on any aspect of this request, please contact me at 1-415-621-6267.
I look forward to your response within the 10-day period stipulated by law. Thank you in advance for your prompt attention and reply to this request.