As we are all aware, the passage of the 21st Century Cures Act includes a provision for the creation of a Lyme and Tick-borne Diseases Working Group to operate under the aegis of the U.S. Department of Health and Human Services. The purpose of the Working Group is:
“. . .to provide expertise and to review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure inter-agency coordination and minimize overlap, and to examine research priorities.”
(The full text of the Act is provided via the link below. (Section 2062, page 47, refers to tick-borne diseases.)) https://www.gpo.gov/fdsys/pkg/BILLS-114hr34enr/pdf/BILLS-114hr34enr.pdf
The law calls for both federal and non-federal membership on this Working Group. Of the non-federal membership, the distribution of expertise, representing all points of view, shall include:
NON–FEDERAL PUBLIC MEMBERS.—Seven non–Federal public members, consisting of representatives of the following categories:
(i) Physicians and other medical providers with experience in diagnosing and treating tick-borne diseases.
(ii) Scientists or researchers with expertise.
(iii) Patients and their family members.
(iv) Nonprofit organizations that advocate for patients with respect to tick-borne diseases.
(v) Other individuals whose expertise is determined by the Secretary to be beneficial to the functioning of the Working Group.
The Lyme advocacy community is invited to nominate experts for consideration for appointment to the Working Group. This invitation represents an extraordinary opportunity. It is critical that we work together to recommend the best qualified members of our community to represent the interests of Lyme patients on this Committee, and then offer our unified support, expertise, and assistance to our representatives as they go forward.
Unlike many similar cause-based communities, the Lyme community does not operate under one primary umbrella. We are leaders and members of a variety of smaller organizations or entities, sometimes affiliated with larger groups, sometimes independent. We are professional individuals, or expert volunteers. Together we represent a broad, diverse and very dedicated community committed to reforming the Lyme landscape.
In recognition of the expertise existing throughout our community, and to help facilitate t participation by all concerned stakeholders to this issue, several advocates have offered to create a system that allows interested participants an easy vehicle by which to advance their nominations.
Advocates have developed a Nomination Form that can be found below.
The form may be used by Lyme leaders and other Lyme advocates or experts who are well-versed in the issues that will be under consideration at the federal level, and who have the breadth of insight and experience to nominate highly qualified candidates.
In an agreement with ILADS, the Lyme Action Network will compile nominations for the categories of “Patients and their families” and “Non-profit organizations and advocates” while ILADS will focus on collecting and advancing nominations for “Physicians and other medical providers” and “Scientists and researchers”. If you wish to participate in the nomination for “Non-profit organizations and advocates” and “Patients and their families” please use the form on the LAN website.
The nominating period will close on May 31, 2017. The nominations submitted through the Lyme Action Network’s site will not undergo any adjudicative evaluation but will be collected and tallied. LAN and ILADS will coordinate efforts to advance a list of nominees for each category to the legislators who will be working with Secretary Price to select the non-federal members of the Working Group. Working together helps to demonstrate that we are united in our commitment to use this opportunity as the basis for meaningful and permanent change. We expect that the legislators will include Senator Blumenthal, Senator Gillibrand, and Congressman Smith. At that point, additional information may be requested of the n
The nomination form on this website is offered as a voluntary tool to Lyme leaders and experts and other members of the community who are considered to have expertise in this field.
Please continue down the page to file your nomination.