Link to post- https://www.linkedin.com/pulse/sunshine-law-faca-ever-see-sun-tbdwg-kristina-bauer/
Will the Sunshine Law and FACA ever see the sun in the TBDWG?
Published on April 10, 2018
Instructor and President at Yoga Synergy Spa
The Tick-Borne Disease Working Group (TBDWG) is governed by a number of laws including the Federal Advisory Committee Act (FACA). FACA assures that ‘the Congress and the public are kept informed with respect to the number, purpose, membership, activities and cost of advisory committees’.
The Sunshine law requires public meetings, deliberations, and the sharing of documents to be open to the public so we have a chance to participate in the following meetings.
However, during the December 2017 public meeting, the Designated Federal Officer to the TBDWG made a series of promises regarding transparency that have, for the most part, not been met. The point of the committee is to appease the public in many cases related to Lyme disease.
RESPONSE- The "point of the committee is" NOT "to appease the public in many cases related to Lyme disease." It has a stickly outlined structural foundation and specific goals, as stated publicly below. Source
QUOTE- "The Working Group will provide expertise and review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.
The Working Group shall have the following responsibilities:
(A) Not later than two years after the date of enactment of the authorizing legislation, develop or update a summary of:
(1) ongoing tick-borne disease research, including research related to causes, prevention,
treatment, surveillance, diagnosis, diagnostics, duration of illness, and intervention for
individuals with tick-borne diseases;
(2) advances made pursuant to such research;
(3) federal activities related to tick-borne diseases, including:
(a) epidemiological activities related to tick-borne diseases; and
(b) basic, clinical, and translational tick-borne disease research related to the pathogenesis,
prevention, diagnosis, and treatment of tick-borne diseases.
(4) gaps in tick-borne disease research described in clause 3b;
(5) the Working Group's meetings; and the comments received by the Working Group.
(B) Make recommendations to the Secretary regarding any appropriate changes or improvements
to such activities and research; and
(C) Solicit input from States, localities, and non-governmental entities, including organizations
representing patients, health care providers, researchers, and industry regarding scientific
advances, research questions, surveillance activities, and emerging strains in species of
pathogenic organisms."
CONTINUED RESPONSE- No where does it say this working group must "appease the public" or even bow to their demands. If anyone would like a committee to do something different than this one was designed and ordered to do by way of an official Congressional Act and Codes of Regulations, then get one of your own. This is not the time, place or audience to be complaining to or about any structural changes wanted by a handful of non-professionals tossing themselves into the political arena.
The subcommittee members are doing their jobs and are not going to suddenly stop and cow-tow to your unsubstaniated complaints because you happen to want something different.
In the Lyme community there has always been a divide created by those who have an uncontrolable desire to crush what others are working on at any given time. These same people continue to try to disrupt others work rather than focusing on what they can do to HELP our situation. They need to stop impeding progress and making the Community as a whole appear insane.
We find this unacceptable in that we need action now, especially in making sure all committee and subcommittee meetings are transparent and members held accountable. This is the very framework of what work will transpire on our behalf.
CFR Part 1003 details the implementation of the government in the Sunshine Act; this law further details transparency and accountability requirements. [2]
Under the Sunshine Act:
A meeting or portion of a meeting may be closed and information pertaining to a meeting withheld —for specified reasons found under the law under— only by vote of a majority of members. This is not happening AT ALL!
RESPONSE- The Code of Federal Regulations (CFR) was implemnented to cover many different scenarios, not just a disagreement in the greater Lyme Community between the IDSA/CDC and patient groups. EXAMPLES- Protecting witnesses' names in a discussion of drug enforcement policies, protecting undercover officers identities and locations when discussing potential terroristic acts against the USA and foreign countries, etc.
And again, the applicable code does not require committee members to share their every day activities step by step with the public.
No 15 days notice of subcommittee meeting, no observing the subcommittee discussions, no access to how they made their decisions. No transparency. We need to make sure the efforts made by the TBDWG are not rewritten or overridden by anyone. If literature is not kept open in what the subcommittees write, it can be rewritten.
RESPONSE- The subcommittee members report to the committee members, not to the Secretary. Subcommittee members work is a contribution, not a final plan or anything that is set in stone. Their contributions are designed to be researched, edited and if they warrant, be placed in a final draft by the Committee members.
QUOTE- "In carrying out its function, the Working Group may establish subcommittees..." There actually can be Committees with NO subcommittee members. Our "side" finally has a seat at the table- a number of them, doctors and strong community leaders- and now is their chance to help all of us get our concerns considered.
So what are these people doing that keep telling you what to do? What is their goal? What is their motivation? Can they possibly think it is helpful to keep pushing YOU to harass the ONLY people who have a chance of helping us?
This violates FACA and Sunshine because their is no reason like a threat to national security for these meetings to be held in secret.
RESPONSE- According to the CFR there doesn't have to be a threat. They have every right to keep on working without reporting every single conversation they have and every little contribution they've made to the public. This is "standard procedure" and it falls under the CFR.
The set-up here has even allowed for public input. So, if you have suggestions that are in line with their mission, you are free to share them and they will be recorded. However, the repeated, petty, half-witted responses you are being told to submit and the harassment and nonsense that goes with it won't be seen by most and will be a waste of your time and energy.
The subcommittee members aren't even allowed to communicate among other subcommittee members, per former TBDWG committee chair, Karen Vanderhoof-Forschner, per a public social media feed.
RESPONSE- Karen Forschner and all other subcommittee members are suppose to provide drafts and collections of information for the Working Group. They do not have the ability, per the CFR (Code of Federal Regulations), to have their research or submissions be the "final word".
QUOTE- "These subcommittees were established to assist the Working Group with the development of the report to Congress and the HHS Secretary as required by the 21st Century Cures Act." Source
That's why it is called a "working GROUP", not a Karen Forschner free-for-all or whatever-I-say-goes committee. Imagine what it would be like if someone on the "other side" of this debate were to be allowed say what ever they wanted and it be the "final word". And since, unlike Karen Forschner and Susan Green, the subcommittee members can't be the final word... are THEY quitting because of that? No.
If anyone would like to send the TBD working group a letter with your thoughts, simply write it out (respectively) and send it to the email address they provided-tickbornedisease@hhs.gov
Thank you for your help in holding these people responsible for the future health of our children.
Kristina Bauer, Lyme Advocate and Mom of 4 Gestational Lyme Babies
KristinaBauer7@icloud.com
A handful of people had a chance to make needed changes for the Lyme Community, and instead QUIT and are now part of the bashing club that's attacking those remaining. What's wrong with these people? You'll notice even with the Constitution the subcommittee members made "important contributions"- at least those who didn't walk out on us.
QUOTE- "The Constitution was the result of months of passionate, thoughtful deliberation among delegates. Many others besides James Madison made important contributions, particularly those who served on the Committee of Detail, which included Oliver Ellsworth, Nathaniel Gorham, Edmund Randolph, John Rutledge, and James Wilson; and those on the Committee of Style, which included Alexander Hamilton, William Johnson, Rufus King, and Gouverneur Morris. Other notable delegates included Benjamin Franklin and George Washington (who served as president of the convention)." Source
o A sizable amount of discourse is occurring among emails, also not publicly available.
o FACA rules require public access to materials used by federal employees in preparation for these open full meetings of the TBDWG; importantly,
o These subcommittees are very much part and parcel to Wolitski’s preparation for the full TBDWG meetings; therefore,
§ FACA requires the public have access to these subcommittees to provide citizens a chance to prepare for the full TBDWG meetings.