“Tick-borne disease working group” nominations due to HHS by August 16
The Department of Health and Human Services (HHS) is accepting nominations for people to serve on a federal “tick-borne disease working group.” The working group was a Lyme-related portion of the 21st Century Cures Act, signed into law in December 2016.
According to an HHS announcement,
The Working Group will consist of 14 voting members who represent diverse scientific disciplines and views. The composition will include seven federal members and seven non-federal public members. The federal members will consist of one or more representatives of each of the following: Office of the Assistant Secretary for Health, the Food and Drug Administration, the Centers for Disease Control and Prevention, and the National Institutes of Health. The non-federal public members will consist of representatives of the following categories: Physicians and other medical providers with experience in diagnosing and treating tick-borne diseases; scientists or researchers with expertise; patients and their family members; nonprofit organizations that advocate for patients with respect to tick-borne disease. Individuals who are appointed to represent federal entities will be classified as regular government employees. The non-federal public members will be classified as special government employees. Invitations of membership will be extended to other agencies and offices of the Department of Health and Human Services and other individuals as determined by the Secretary to be appropriate and beneficial for accomplishing the mission of the Working Group.
Dr. Neil Specter
When I first asked Neil he said no, but later was considering it.
He certainly would be ideal.
I also think we could “pack the ballot box” by sending in separate nominations for him…
I just saw this site now, the 16th ! I am a Support Group facilitator, Advocate & Activist in RI. I would like to nominate someone (? perhaps myself) from my members’ list of over 200 patients who have come to me in the past 6 years, seeking help for medical care, to be a a part of this group. After having been to several doctors & medical facilities where they were tested, mis-diagnosed & mistreateded, I have been able to refer them to Lyme Literate Doctors, who know the reality of this dibilitating disease and how to treat effectively ! This working/study group must include neglected long suffering people from ”the trenches of LD’ ! Many vital decisions have been made without the input of the victims (those who have been there) ! RI being a critical endemic area, I would suggest Sen. Jack REED or Sheldon WHITEHOUSE be involved ! Or, maybe just me ? I do have a lot of experience & knowledge to provide. Respectfully submitted by: Jane Barrows
You can nominate yourself. Act fast–today’s the deadline.
I nominate Darlene O’Conner, Board member of Central Mass LD Foundation and a strong activist in the world of Lyme. Darlene is very knowledgable in all things Lyme…….especially in diagnosis & treatment ! BTW: 14 members of Darlene’s immediate family have struggled & suffered with this horrendous disease. She would be a valuable asset to this ‘team’ !! NOTE: Per my previous response……I still want to (re-) nominate myself. This critical, complex & controversial health epidemic needs input from the community
I would like the opportunity to contribute my vast knowledge, accumulated over the past 66 years, as…………. a victim, researcher, supprorter, & advocate for over 200 local individuals; and, as an activist…….working with our State politicians, and the DOH ! I’ve been called an “encyclopedia of Lyme”. If you have not secured 14 candidates yet, I would like to be considered for a position on the ‘Working Group’. Respecfully, Jane Barrows of LyLyme Newport , RI
I just wrote a (lenthy) response to nominate 2 more people, who KNOW Lyme inside out, upside down. Somehow my message disappeared when I tried to send. Hopefully you got it; if not, here they are, briefly ! Without all the substantiation, they are: 1) Eva Sapi, Research Director, Univ. of New Haven, West Hartford, CT. 2) Daniel Cameron, MD “All Things Lyme”. Though it’s past deadline…..these are in the category of people that are meeded in this ‘working group’ ! Most sincerely, Jane Barrows