The day after Xmas, I wrote to executive secretary of NIAID's HIV drug advisory panel, asking for their 2007 meeting schedule. I thought it would be a no-brainer for her to simply reply with the schedule and I could start to make plans to attend the panel's meetings and offer my advice to the panel members.
I apparently asked a tough question because the reply from the executive secretary didn't provide me the schedule and informed me that my very basic questions would be addressed by higher ups in the NIH chain of command:
In a message dated 1/10/2007 6:26:17 A.M. Pacific Standard Time, apau@niaid.nih.gov writes:
Dear Mr. Petrelis:
Thanks you for your inquiry. Your request has been forwarded to the NIH Committee Management Office. You will receive a response to your query from a representative of that office.
Sincerely,
Alice Pau
This reply is one more glaring example of the heavy secrecy cloak surrounding this drug advisory panel and should be of deep concern to all people with HIV or AIDS, our doctors and advocates, because the recommendations it makes have a direct and daily influence over our lives, personal health and HIV treatment choices. There's no reason to keep out the prying eyes of the public and PWAs from the work of the panel. Do the community reps on the panel understand this, and if they do, why aren't they insisting on opening the panel's proceedings?
You will not find any information about the deliberations and meetings of the panel on its web site. Sunshine seems to be an anathema to the panel and I don't know why.
Also bear in mind that this is the same NIAID HIV panel that until I came along with my FOIA request, had never been asked to make public its meeting minutes and all documents used to arrive at treatment recommendations.
In response to my request, the NIAID FOIA office has located thousands of pages of records, for which they want me to pay nearly $600 in searching and copying fees. My appeal for a fee waiver is pending and I hope to soon hear from NIAID FOIA that the waiver has been granted.
The drug panel's secrecy (and weakness) stands in stark contrast to the glorious transparency of another NIH AIDS related advisory body, the Office of AIDS Research's Advisory Council, OARAC. Check out their web site here.
At the time when I was asking the drug panel's secretary for their 2007 meeting plans, I simultaneously made the same request for meeting info from the OARAC's coordinator. Her response is a wealth of info, compared to the buck-passing and no info from her drug panel counterpart:
In a message dated 1/3/2007 1:31:02 P.M. Pacific Standard Time, BracknaC@od.nih.gov writes:
Mr. Petrelis:
I understand that you called my office to request information about the Office of AIDS Research Advisory Council (OARAC) meeting that will be held in April 2007.
The notice of meeting will appear in the Federal Register approximately 30 days before the meeting (currently scheduled for April 19 - 20, 2007). There is time provided at every OARAC meeting for public comments at the end of the meeting.
Sincerely,
Christina Brackna
Coordinator, Program Planning and Analysis
Office of AIDS Research
National Institutes of Health
Very much unlike the drug panel, the OARAC has a web page of minutes from previous meetings, four years' worth actually, located here. And they also have a page about their 2007 meeting schedule. Click here to read it.
Is the drug panel totally averse to explaining publicly some of its responsibilities? No, not really, but to locate even the most basic stuff on it one has to go Down Under.
On October 14, 2006, in Melbourne, Australia, at an HIV treatment consensus conference organized by the Australian Society for HIV Medicine, Dr. Alice Pau, of the NIH drug panel, made a presentation about the panel using 19 PowerPoint slides full of useful basics, such as:
- rules of governance and structure;
- panel membership terms of 1-, 2- or 3-year durations, with an option to renew the 3-year term memberships;
- self-perpetuating panel with a membership committee that identifies new members;
- members expected to attend at least 50% of meetings and/or monthly teleconference calls, and to serve on a subcommittee or a working group;
- confidentiality and financial disclosures;
- funding support matters.
With this public presentation by Dr. Pau to Australian PWAs, their caregivers and government health authorities, she has done more to educate and engage Australians than U.S. citizens on the inner workings of her panel, and that is something the panel should quickly rectify. Click here to read her nineteen slides.
Why can't I find on the web any URLs to reports about Dr. Pau making similar efforts on American soil regarding the drug panel? Probably because she has not done so. The transparency she gave to the Australians should and must be duplicated at home.
The Proceedings Report put out by the Australian HIV group contains a section on comments and questions from the audience, with replies from the experts. This was of keen interest to me:
Question: Does the US rely on NIH's Panel member's voluntary disclosureof conflict of interest and is there a cap on the percent of Panel members who have declared a conflict of interest?
Answer: Voluntary and no cap.
I've no clue why the NIH HIV drug panel is so secretive, but it should change its ways, adopt transparency as a way of better meeting the needs of PWAs, and follow the example of openness set by OARAC, without forcing American PWAs to scour Australian HIV web sites.
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