Madison Area Lyme Support Group

Latest on 21st CCA

Latest on the 21st Century Cures Act

House.gov is the site to go to to watch the proceedings around 1 pm ET. Check schedule for updated times as they frequently change.  The vote is expected at 5pm.

Here is the exact language concerning Lyme in today’s pending House action:

http://docs.house.gov/billsthisweek/20161128/CPRT-114-HPRT-RU00-SAHR34.xml#toc-H24E98F6D61984CE6B08DC7B0D831AB57

SEC. 2062. TICK-BORNE DISEASES.

(a) In General.—The Secretary of Health and Human Services (referred to in this section as “the Secretary”) may continue to conduct or support epidemiological, basic, translational, and clinical research related to vector-borne diseases, including tick-borne diseases.
(b) Reports.—The Secretary shall ensure that each triennial report under section 403 of the Public Health Service Act (42 U.S.C. 283) (as amended by section 2032) includes information on actions undertaken by the National Institutes of Health to carry out subsection (a) with respect to tick-borne diseases.

(c) Tick-Borne Diseases Working Group.—

(1) ESTABLISHMENT.—The Secretary may establish a working group, to be known as the Tick-Borne Disease Working Group (referred to in this section as the “Working Group”), comprised of representatives of appropriate Federal agencies and other non-Federal entities, as appropriate, to provide expertise and to review all efforts within the Department of Health and Human Services related to tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.
(2) RESPONSIBILITIES.—The working group shall—

(A) not later than 2 years after the date of enactment of this Act, develop or update a summary of—

(i) 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;
(ii) advances made pursuant to such research;
(iii) Federal activities related to tick-borne diseases, including—

(I) epidemiological activities related to tick-borne diseases; and
(II) basic, clinical, and translational tick-borne disease research related to the pathogenesis, prevention, diagnosis, and treatment of tick-borne diseases;
(iv) gaps in tick-borne disease research described in clause (iii)(II);
(v) the Working Group’s meetings required under paragraph (4); and
(vi) 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 nongovernmental 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.
(3) MEMBERSHIP.—The members of the working group shall represent a diversity of scientific disciplines.
(4) MEETINGS.—The Working Group shall meet not less than twice each year.
(5) REPORTING.—Not later than 2 years after the date of enactment of this Act, and every 2 years thereafter until termination of the Working Group pursuant to paragraph (6), the Working Group shall—

(A) submit a report on its activities under paragraph (2)(A) and any recommendations under paragraph (2)(B) to the Secretary, the Committee on Energy and Commerce of the House of Representatives, and the Committee on Health, Education, Labor, and Pensions of the Senate; and
(B) make such report publicly available on the Internet website of the Department of Health and Human Services.
(6) SUNSET.—The Working Group under this section shall terminate 6 years after the date of enactment of this Act.

Urgent! Calls Needed Asap!

Please contact your US Representative asap and ask them to vote YES to the 1st Century Cures Act.  This bill has Lyme legislation that will help patients.

The vote will be at approximately noon today.

http://www.whoismyrepresentative.com  If you are unsure who your Representative is, you can find them here with your zip code.

Thankful

Published on Nov 28, 2016
LymeLight Foundation grant recipients share about their treatment grants and describe symptoms of Lyme disease.

Breaking Lyme Bill News!

November 30, 2016

Lyme community leaders are pleased to announce that language on tick-borne diseases (TBD) will be included in the 21st Century Cures Act (the House Amendment to Senate Amendment to HR 34). The inclusion of this language was achieved after 2 days of intense negotiations with Congressional offices. The language will be included in the House version of the bill which is expected to pass easily due to its broad bipartisan support. The signatories listed below mutually agreed upon the new TBD language that will now be included in the bill.

Yesterday and early today, Leaders put out calls to the community to have them contact their federal Senators and Representatives to pull out congressionally proposed Lyme language that would have contradicted the bill’s intent. Thank you all for those efforts. Congressional leaders responded by indicating a willingness to work with the Lyme community. That effort was successfully concluded at 5pm today when the Rules committee met and the proposed language agreed upon by both sides was incorporated into the large 21st Century Cures amendment legislation.

We would like to thank House Majority Leader Kevin McCarthy, Chairman Fred Upton of the Energy & Commerce Committee, and Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus, for their efforts to make this happen. We also thank Congressman Chris Gibson whose work in having Lyme language inserted into the original Cures Act which passed the House enabled us to move forward with this groundbreaking effort. A vote on the Rules portion and then on the Managers Amendment will take
place Tomorrow Wednesday, midday, and will be broadcast on CNN. Final times will be available in the AM.

Patricia Smith, President, Lyme Disease Association, Inc.
Jill Auerbach Chair, Hudson Valley Lyme Disease Association
Phyllis Mervine, President, LymeDisease.org
Ira Auerbach, Hudson Valley Lyme Disease Association
Christina T. Fisk, President, Lyme Action Network
David Roth, Founder of Tick Borne Disease Alliance and Global Lyme Alliance
Bruce Fries, President, Patient Centered Care Advocacy Group
Holly Ahern, Vice President, Lyme Action Network
Dorothy Leland, Vice President, LymeDisease.org
Timohy Lynagh, Board Member, Lyme Disease Association, Inc.