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News from Representative Chris Smith
December 14, 2016

Lyme Disease Legislation: Year in Review
Two Big Wins for Lyme Victims in 2016!

Knowing of your interest in bolstering federal efforts to help individuals with Lyme disease, I would like to take the opportunity to provide you with an update on recent legislative accomplishments impacting Lyme disease patients.

As the Co-chair of the House Lyme Disease Caucus and a representative of one of the hardest hit states, I am acutely aware of the impact that devastating and rare diseases like Lyme have on families. The CDC estimates that there were over 380,000 cases of Lyme disease in the US last year, with more than 48,000 cases in New Jersey.

 

21st Century Cures Act Signed into Law
Breakthrough Lyme Disease Working Group Included

The 21st Century Cures Act, bipartisan legislation I supported to reform and streamline the federal research and treatment approval process, incentivizes the development of lifesaving cures and brings many other needed improvements to the delivery of health care was signed into law yesterday. Among its many specific provisions, the bill includes many provisions to help patients with Lyme disease by establishing a national, patient-centric working group.

Speaking during the debate in the House of Representatives, I reminded my colleagues that as far back as 1992 I brought together medical officials at NIH and CDC with Lyme Disease Association President Pat Smith and other advocates from New Jersey who highlighted the alarming increasing prevalence of Lyme. I later introduced the first bill to bring patients and their advocates into the process—as well as doctors, researchers and on-the-ground officials from state and county health organizations—by creating an inter-agency Task Force.

My original legislation ensured the individuals impacted by federal policies would have a seat at the table when the decisions are made. It has taken many years, and several drafts but thankfully today’s Cures package includes similar language that will begin the process of addressing the great unmet needs in the Lyme community in an open and transparent manner. Specifically, the Cures package will create a Working Group comprised of federal and non-federal members tasked with reporting to Congress on scientific advances, research questions, surveillance activities and emerging strains in species of pathogenic organisms.

The members must also represent a “diversity of views,” bringing hope to Americans suffering from chronic Lyme. Many have suffered for decades with this debilitating disease, only to be told that their illness does not exist. Enactment of the Cures package will move us one step closer to acknowledging and addressing the root problems of chronic Lyme.


‘Chronic’ Lyme Patients Recognized for First Time with Smith-Requested Research Funding 

Lyme disease victims will no longer be marginalized, with research funds allocated in the 2016 (FY16) Congressionally Directed Medical Research Program (CDMRP) Tick-Borne Diseases Programmatic Panel. 

The House Appropriations Committee, for the first time, included new resources for Lyme disease research through DOD’s innovative, high-risk, high-reward program. 

The funding in the DOD bill will go a long way to find better treatments for the men and women in our military who have contracted Lyme—and the advances in research and treatments made on behalf of our men and women in uniform have substantive and beneficial applications for patients in the greater population.

The $5 million allocated by the DOD for Lyme and other tick-borne disease research represents a quarter of funding currently allotted for Lyme disease, which is $23 million annually at the National Institutes of Health (NIH).

 
 
How I Can Help You
 
•  Federal agencies
•  Federal grants
 
•  Service academy nominations
•  Tours and tickets in Washington, D.C.
 
 
 
 
How You Can Help Me
 
I remain convinced that some of the best solutions to America's problems come from outside of Washington, D.C. I encourage you to voice any questions, concerns, or suggestions you may have by contacting one of my offices.
 
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