Jenna Luché-Thayer… March 29, 2018

consulting Senior Advisor - US Government, United Nations, non-profits, corporate social responsibility programs

Friends,

What happens when the laws intended to serve you are used against you?

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’.

Regarding the TBDWG, Health and Human Services has posted very general information to meet some minimum requirements of FACA. For example, there have been a few announcements regarding persons leaving and joining the TBDWG and there was one podcast of Subcommittee meetings.

However, during the December 2017 public meeting, the Designated Federal Offer to the TBDWG made a series of promises regarding transparency that have, for the most part, not been met.

Therefore, it is understandable that Lyme patients and advocates following the TBDWG have become frustrated and skeptical from this lack of transparency and accountability.

The Code of Federal Regulations (CFR) is considered a body of administrative law and it governs many practices related to transparency and accountability. “The CFR is the codification of the general and permanent rules and regulations published in the Federal Register by the executive departments and agencies of the federal government of the United States.” [1]

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.

Does this mean the TBDWG voted to keep these meetings closed and this information withheld?

It is required that the General Counsel ‘publicly certify that, in his or her opinion, the meeting may be closed to the public and shall state each relevant basis for closing the meeting’

In the case of the TBDWG, where is statement that details the relevant basis for closing the meetings?

In fact, the Sunshine Act only allows for certain reasons to close a meeting and the information related to this meeting be withheld. The reasons include:

× classified information that must be kept secret in the interests of national defense or foreign policy

× matters of internal personnel rules and practices

× trade secrets and privileged or confidential commercial or financial information

× information that might affect due process and law enforcement, such as accusing a person of a crime, investigatory records compiled for law enforcement, endanger the life or physical safety of law enforcement personnel; disclose confidential sources; deprive a person of a right to either a fair trial or an impartial adjudication, an action in a foreign court or international tribunal, or an arbitration

× information that might constitute an unwarranted invasion of personal privacy

Clearly, none of the above reasons apply to the TBDWG.

There is another reason for having closed meetings, it is “that the matters be withheld from the public in such a manner as to leave no discretion on the issue”. In plain speak, this means ‘the public has no say in the matters at hand’.

On the one hand, the application of this ‘no say’ reason this would go against the spirit of law that established the TBDWG.

On the other hand, application of the ‘no say’ reason would simply continue the decades of behavior by the Centers for Disease Prevention and Control (CDC) regarding Lyme patients and advocates and any member of the public who does not share CDC’s opinions regarding Lyme.

At this point in time, the lack of transparency surrounding the TBDWG can be interpreted as ‘the public has no say in the matters at hand’ —particularly given the majority of the persons chosen for the TBDWG and its subcommittees receive CDC and/or National Institutes of Health (NIH) grants and/or have made clear and public expressions promoting the opinions of the Infectious Diseases Society of America’s (IDSA) as found in their 2006 Lyme Guidelines.

The IDSA and the CDC share near verbatim versions of anti-patient rhetoric regarding Lyme disease. Both entities promote the fraud that Lyme patients suffering from ongoing Lyme symptoms and serious complications following a short course of antibiotics are ill-adjusted hypochondriacs who would benefit from counseling, in combination with psychotropic drugs and pain management.

Both IDSA and the CDC promote the fraud that ‘extending the use of antimicrobial therapies for such patients in order to reduce, manage or eliminate their symptoms is unnecessary and dangerous’ —despite the fact there are Clinical Practice Guidelines for Lyme disease that include these treatment options and fully meet internationally accepted evidence-based standards. Furthermore, these pro-patient Guidelines are posted on the federal National Guidelines Clearinghouse.

The secrecy shrouding the TBDWG may be further exacerbating Lyme patient distrust, as well as the distrust of many members of the public who know someone suffering from the disease.

For example, in the last few weeks, Lyme patient advocates sending inquiries to the TBDWG regarding the lack of posting of public comments have been told “Federal regulations require that any documents posted to the internet must give disabled employees and members of the public access to the information that is comparable to the access available to others. This regulation adds to the amount of time it takes to post items to the internet. The written public comment specific to the TBDWG meetings will be posted on the website soon”.

According to these laws, persons with disabilities include persons with ‘a physical or mental impairment that substantially limits one or more major life activities —such as hearing, speaking, sleeping, thinking, learning, working or the operation of a major bodily function’.

This description of the disabled describes many persons suffering from persistent cases of Lyme disease, including those with complications from co-infections.

In law, ‘Section 508 of the Rehabilitation Act of 1973 (as amended 29 U.S.C. 794d), clearly spells out federal agency requirements and emphasizes that information sharing, using electronic and information technology, such as the TBDWG website, must be accessible to those with visual and audio disability. [3]

Section 508 of the Rehabilitation Act states that readily available commercial products can be used to provide access and “the agency must procure the product that best meets the standards”.

Today there are many such commercial products available for both the visual and hearing impaired. For those with visual impairment, there are free screen readers —such as https://www.nvaccess.org/

It should be noted that simply posting the minutes of meetings and public comments on the TBDWG website would provide access to information for those who have hearing loss.

Not only does it appear ‘Section 508 of the Rehabilitation Act’ is being used for purposes opposite to its lawful intent, this use may also be undermining the Sunshine Act and the purpose of FACA.

For goodness sake, who had the bright idea of recommending the TBDWG use a law that is intended to provide access to information and facilitate participation by those who are disabled as the reason to deny access to information to Lyme patients, many of whom are themselves disabled?

This excuse is as ironic as it is shameful and frankly unbelievable.

Let me know what you think.

Faithfully,

Jenna

Jenna Luché-Thayer. 32 years working globally on the rights of the marginalized — Former Senior Adviser to the United Nations and US Government. Founder, Global Network on Institutional Discrimination™ — Holding institutions accountable for political and scientific solutions. Founder and Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes

Email — jennaluche@gmail.com

……………………………………………………………..

[1] https://www.archives.gov/federal-register/cfr/about.html.

[2] https://www.law.cornell.edu/cfr/text/6/part-1003

[3] https://www.access-board.gov/guidelines-and-standards/communications-and-it/about-the-section-508-standards/section-508-standards

Link To Complaining Piece Here

My Response to the

Blah Blah Blah...

Shortened/quoted to bring up the main points.

THAYER- Does this mean the TBDWG voted to keep these meetings closed and this information withheld?

My Response- No. It means they recently completed the first meeting (December) and haven’t had time to post all of the submitted materials on their website yet. They’ve apologized in writing and also explained the delay, which is due to the privacy issues that were brought up at the last minute by the website staff, NOT the TBD working group!

The TBD working group is trying to remedy this situation and be sure everyone who submitted comments wants their names and personal information publicized along with their comments. I know. I got an email last week explaining this whole process and asking my permission to display my personal information. Thayer has also seen this explanation, but still whines. ??

THAYER- At this point in time, the lack of transparency surrounding the TBDWG can be interpreted as ‘the public has no say in the matters at hand’

My Response- No, it can’t. Not by a long shot! The TBD working group members are willing and already said they will be sharing the comments as permitted by federal rules, regulations and acts. You just need to give them some time! Bugging them to hurry up does absolutely NO good and it makes the Lyme patient "buggers" look crazy.

THAYER- For example, in the last few weeks, Lyme patient advocates sending inquiries to the TBDWG regarding the lack of posting of public comments have been told “Federal regulations require that any documents posted to the internet must give disabled employees and members of the public access to the information that is comparable to the access available to others. This regulation adds to the amount of time it takes to post items to the internet. The written public comment specific to the TBDWG meetings will be posted on the website soon”.

My Response- B-I-N-G-O! Thayer KNOWS this is the reason there is a delay, but still wants to whine and complain about it. And she wants YOU to do the whining for her! Will that REALLY make them move any faster? I think not.

Thayer goes on to say…

THAYER- In law, ‘Section 508 of the Rehabilitation Act of 1973 (as amended 29 U.S.C. 794d), clearly spells out federal agency requirements and emphasizes that information sharing, using electronic and information technology, such as the TBDWG website, must be accessible to those with visual and audio disability. [3]

My Response- B-I-N-G-O! Again, she KNOWS why there is a hold up with sharing the information- got it in writing- but, she still wants to whine! What's wrong with these people?

Thayer goes on to complain…

THAYER-Today there are many such commercial products available for both the visual and hearing impaired. For those with visual impairment, there are free screen readers —such as https://www.nvaccess.org/

My Response- Are you for real? Yes, there are screen readers and other products. But, that doesn’t mean patients are suppose to run out and buy these products as Thayer seems to think. (READ THE AMERICAN WITH DISABILITIES ACT THAYER.)

It means there needs to be adjustments to this NEW federal working group’s webpages- audio/video- so that those with disabilities can access the information.

Then I like the folksy, quaint comment that follows… (And I thought I had the market on that- HA!)

THAYER- For goodness sake, who had the bright idea of recommending the TBDWG use a law that is intended to provide access to information and facilitate participation by those who are disabled as the reason to deny access to information to Lyme patients, many of whom are themselves disabled?

My Response- Did you have to read that line more than once to get it? I did! Whew!

Twisting this GOOD rule that is designed to help ALL disabled people everywhere, into something to support the bad judgment and thinking portrayed here by Thayer, et. al, is stupid/no, crazy/no, its sad and manipulative. It shouldn't be happening.

One more time- LET THEM DO THEIR WORK SO THEY CAN TRY TO MAKE PROGRESS AND TRY TO HELP OUR SITUATION. YOU CERTAINLY AREN'T HELPING NOW WITH THROWING OUT THIS JUNK.