Urgent Action Needed

Please find information regarding the potential NEW FEDERAL LYME law that could potentially CODIFY the IDSA guidelines. PLEASE contact your senator or congressperson TODAY and talk with anyone else you feel may have influence on this vote: requesting the following outlined by Gregg Skall:



The 21st Century Cures Act now being refined by the lame duck Congress is one of the most-lobbied health care bills in recent history, with nearly three lobbyists working for its passage or defeat for every lawmaker on Capitol Hill.

Legislation That Would Shape FDA And NIH Triggers Lobbying Frenzy
 http://www.npr.org/sections/health-shots/2016/11/25/503176370/legislation-that-would-shape-fda-and-nih-triggers-lobbying-frenzy

Prior versions of section 2062 required diversity of working group members (i.e. members who support the variety of viewpoints and the diversity of science research respecting Lyme and Tick-borne diseases). This language has been stripped from the current version, undermining the interests of the Lyme community:
 


A reworked 21st Century Cures Act was released over the holiday weekend which contains wording that is undeniably HORRIBLE for the Lyme patient community.  The 21st Century Cures Act new version provides for the formation of Lyme committees without any guarantees of balance. Based on years of experience with all the parties involved, including and particularly NIH, this new provision will not provide for the required diversity of viewpoint required to arrive at a meaningful and useful result; indeed, it will have the opposite effect.  We are asking that the Tick-borne disease provision, starting at Section 2062 be deleted from the bill.
 
   

(c) TICK-BORNE DISEASES WORKING GROUP.—

10 (1) ESTABLISHMENT.—The Secretary may es-

11 tablish a working group, to be known as the Tick-

12 Borne Disease Working Group (referred to in this

13 section as the ‘‘Working Group’’), comprised of rep-

14 resentatives of appropriate Federal agencies and

15 other non-Federal entities, as appropriate, to provide

16 expertise and to review all efforts within the Depart-

17 ment of Health and Human Services related to tick-

18 borne diseases, to help ensure interagency coordina-

19 tion and minimize overlap, and to examine research

20 priorities.


The Lyme disease community is united against this wording as it currently stands. At this point, there is a consensus that we want section 2062–the part of bill related to Tick-borne Diseases–be struck completely from the bill.
 


Attached is a copy of the full 21st Century Cures Act and the Section that we need deleted.  Section 2062.  Also, attached is a PowerPoint I presented a couple of weeks ago that shows the provisions of the Gibson bill in side-by-side with a senate version.  The bullets under the side-by-side slides show the benefits of the Gibson version.  Compared to the new Sec. 2062 attached, you can see why we just want it pulled.

Thanks to Gregg Skall JD of Womble Carlyle and Susan Green, JD for sharing this information with ILADS.

 Thank you for your quick action!

The ILADS Board

21st Century Cures Act
http://imgsvr.eventrebels.com/ERImg/01/07/55/21stCenturyCuresActCPRT-114-HPRT-RU00-SAHR34(2)(1).pdf

Section 2062

  http://imgsvr.eventrebels.com/ERImg/01/07/55/SEC.2062.TICK-BORNEDISEASES(1).pdf

Lyme Legislation PowerPoint http://imgsvr.eventrebels.com/ERImg/01/07/55/LymeLegislation201621st.pdf