Published on Dec 1, 2016
Congressman Chris Smith (NJ-04) is a senior member of the House of Representatives, spoke just before the passage of the 21st Century Cures Act, which will establish a new working group on Tick-borne Disease and help patients with Chronic Lyme.
The 21st Century Cures Act passed the House with a recorded vote of 392-26 at 6:39 PM yesterday. The debate took place early in the afternoon, but then a request was made for a recorded vote and so there was a delay of approx. 4.5 hours till other matters were debated and until the whole house could get together on site for a recorded vote.
Despite a switch in bills at the last minute, Lyme Advocates fought hard to overcome the harmful wording to patients.
There are many in Congress that do not want to deal with Lyme and tick borne illnesses as they are influenced and have loyalty to agencies who do not want the Lyme bill at all.
Due to all of this, there were 6 iterations of changes during negotiations and as one advocated on the front lines stated,
“They offered us lemons, we made lemonade. Not as sweet as we would have liked it, but it replaced something that IDSA, and the agencies would have loved: no list of categories, no diversity of views, no FACA (transparency and accountability). Would we have liked more? Yes. Would we have had the Lyme provision removed if we could have and started from scratch in the future? Yes, but that was not an option. What we got was good. Plus we have several champions in the upcoming Congress who will be helping us to ensure we can make the best of this language, if it passes, in the Senate.”
So there you have it folks. The hard reality of working with governmental agencies.
As soon as the official language is published, I will post it.
Today – consider this a victory. Sometimes it’s small steps forward.
The US House of Representatives will vote today on the 21st Century Cures Act. Provisions related to Lyme disease are included in the bill.
Click here: https://www.lymedisease.org/get-involved/take-action/support-legislation/?vvsrc=%2fcampaigns%2f48669%2frespond to use Voter Voice to send a message to your lawmakers.
You can either use the brief message already supplied or feel free to add your own comments and experiences. Now is the time to be heard. It will be delivered to your Representative and Senators.
The Senate will vote soon.
Let’s remind them we aren’t going away and our numbers are growing.
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:
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.
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.
Madison Area Lyme Support Group 