Problems with the Distribution of the Draft Report of Federal Interagency Workgroup on MCS

From: Albert Donnay, adonnay@mcsrr.org
Subject: ATSDR runs out of MCS report !!!
Date: Wed, 23 Sep 1998 10:07:01 -0400
To: immune@lists.best.com

More evidence of ATSDR a) incompetence b) mendacity or c) both: (I was taught that you can never be sure of which judging from the results alone !)

On Sept 20, ATSDR claimed it "ran out" of copies of the draft MCS report (just 3 weeks into the comment period), and is only now printing more. It says more (another 1000) will not be available for another week (athough they are still taking orders to fill when they do).

Apparently ATSDR only printed 1,000 and --even though it got 200 orders in the first 2 days-- it didn't think (or care?) to print more earlier.

The Federal Interagency Workgroup also refused numerous requests to put the draft report on the web or take comments electronically (a violation of the Federal Paperwork Reduction Act ?), even though the same high-level Environmental Health Policy Committee overseeing its work has posted another report (Healthy People 2010) for comment at http://web.health.gov/healthypeople/2010Draft/object.htm with links for comment after every single paragraph !

[The Healthy People report sets detailed public health goals for the year 2010 in areas such as environmental health and occupational health and safety, such as reducing the use of latex and pesticides like chlorpyrifos, but of course it does not mention MCS at all, despite its extraordinarily high prevalence among Gulf War veterans (36% of 1004 randomly sampled from the VA Registry) and the general population -- 6% of 4000 randomly sampled by the California Health Dept.]

Another sign that the Workgroup is hampering access to its report is the extraordinary length of time it has been taking to get some people their copy. I requested mine on the 2nd day and it took 2 weeks, while a colleague who called 2 weeks ago was told he'd have to wait 4 weeks! Others have received copies in a day or two.

If you haven't called yet to order your free copy, please do so now --

CALL 1-800-447-1544

-- Albert Donnay, MHS
Exec. Director, MCS Referral & Resources, Inc.
410-889-6666, fax 889-4944, donnaya@rtk.net, http://www.mcsrr.org

PS: MCS R&R is also concerned about the report's content, of course, and will post more information about this in two parts:

1) a comparison with the comments of 12 "expert reviewers" solicited last year, including those of MCS R&R's medical director Dr. Grace Ziem,

and

2) a comparison with the 1st draft written by ESRI Board Member Frank Mitchell, --a draft which I'd been told several months ago by ATSDR had been lost (after I submitted a FOIA request for it) but which then was miraculously rediscovered after Congressman Bernie Sanders asked for it (although even he had to ask twice) -- Thank you Bernie !

From: Albert Donnay adonnay@bcpl.net
Subject: ATSDR Ombudsman on Agency's Refusal to Post MCS Draft
Date: Fri, 25 Sep 1998 13:51:43 -0400
To: immune@lists.best.com

fyi:

this is the answer i got back from the ATSDR ombudsman yesterday (9/24) after i called to complain about ATSDR's refusal to post on-line or allow electronic comment. (apparently i was the first to complain about this, and only the 5th complaint in the history of the ombudsman office, which just opened 2 months ago)

he is now away until monday when i expect to get an answer to my followup questions. i'll keep the lists posted...

Subject: Re: MCS Draft report
Date: Thu, 24 Sep 1998 18:31:20 -0400
From: Albert Donnay adonnay@bcpl.net
To: "Wilson, Ron" rqw3@cdc.gov

Wilson, Ron wrote:

Mr. Donnay, I have made the necessary and appropriate contacts in the Agency regarding the Draft MCS Report and the issues you raised. I have been advised that a firm decision has been made to not place the Draft Report on the Net since it is possible that persons could alter, amend or otherwise impact the report. For those who desire a copy, they may request a copy via the 1-800 number or file a request under the Freedom of Information Act. I have been advised that another 1,000 copies are expected to arrive on Wednesday, September 30th.

With regard to your request for an extension of time, the appropriate manner for the request is in writing, requesting the extension and proposing a window of time that you feel appropriate under the circumstances.

I am sorry that I was not able to get a more favorable response, but the sensitivity of this report makes it one that the agency desires be viewed by all parties in its original manner, and not a potentially altered version.

If I may help you with other issues, please feel free to call.

Ronnie D. Wilson rqw3@cdc.gov
Ombudsman, ATSDR (at 800-447-1544)

Thanks for your prompt reply.

So that I am sure I understand your response correctly, please answer the follwing:

1) Just who exactly within ATSDR did you identify as responsible for this policy of refusing to post the draft report ?

2) Is there any precendent for this policy of intentionally withholding a draft for public comment from an ATSDR website due to security concerns about hacking?

3) Has any ATSDR webpage has ever been hacked or altered in the past and if so what was its subject matter?

4) May I interpret this decision to mean that ATSDR is placing its website security concerns above its legal responsibilities under ADA to (reasonably) accommodate the needs of citizens with MCS (many of whom cannot tolerate or handle printed materials) and its responsibilities under the Paperwork Reduction Act?

or does ATSDR consider this to be an unreasonable accommodation request?

or does ATSDR consider itself exempt from ADA and PRA requirements?

or does ATSDR simply believe ADA and PRA do not apply in this case? > 5) Since this is an interagency report of 8 agencies acting under the oversight of the Env. Health Policy Committee (according to the Federal Register announcement, EHPC gave ATSDR the admin task of handling the reports' distribution), may I infer that ATSDR's refusal to post the draft for comment represents an explicit decision of the entire workgroup supported by all (or some majority) of its member agencies and/or the EHPC ?

or is this solely a decision of ATSDR that was made without the explicit consent or awareness of EHPC and the other 7 agencies in the workgroup? (You may want to check with Dalton Paxman at EHPC on this: he told me yesterday he thought it was on the web and he was surprised to hear it wasn't.)

6) What about my request that ATSDR accept comments electronically? Even if it won't post the report, shouldn't it be willing to accept comments via email?

7) What about my request that ATSDR include notice of the report's availability on both its "what new" page and its "recent announcements" page?

As for an extension, I hereby formally request that the comment period be extended for 60 days from whatever date it is eventually posted on the web by ATSDR or EHPC -- I am not abandoning this request. At the very least, ATSDR should agree to extend the comment period for as long as the report is out of stock.

Thanks for your initial effort. If you don't feel you can do any more to help me pursue this ADA accommodation request within ATSDR, I will move my complaint up to the next level, but--either way--I hope that you will answer these questions or point me to someone who can.

Last Modified: 9/27/98