Congressman Gottheimer: Lyme Press Conference on Fed. Leg.– LDA Pres. Speaks

LDA President Pat Smith was asked to speak at the press conference on June 10, 2021 in West Milford, NJ, and discussed her personal family involvement with Lyme and tick-borne disease and how the LDA has been active in Washington fighting for help for patients which includes the establishment of the HHS Tick-Borne Disease Working Group, where she served for four years, and the recent introduction of the Children Inflicted by Lyme Disabilities Act, CHILD Act 2021 (HR 3636), for which LDA initiated and helped in development of the language.

 

The CHILD Act 2021 was introduced in the house by Lyme Caucus Co-chair Congressman Christopher Smith (NJ-4-R) and co-sponsored by Congressman Gottheimer and Congressmen Henry Cuellar (TX-28-D), Bill Posey (FL-8-R), and Brian Fitzpatrick (PA-1-R).  The purpose of the bill is “To amend the Individuals with Disabilities Education Act (IDEA to recognize more clearly that Lyme disease can cause disabilities that affect the education of children and to enhance educational services and related services for children with Lyme disease and other tick-borne diseases and for other purposes.” Children can have manifestations including cognitive impairment, mental confusion, memory loss, headaches, difficulty concentrating, speech difficulty, visual and hearing problems, dizziness, mood swings, outbursts, depression, sleep disturbance, OCD, and seizure activity, all of which affect their educational experience. Read LDA article on the Bill

 

Congressman Gottheimer also co-sponsored HR3637, introduced by Smith, authorizing HHS to be able to launch prize competitions for research. HHS and the Alexandra and Stephen Cohen Foundation have formed a public private partnership, LymeX, which will host competitions. The idea is based on the successful KidneyX program.  The LDA is on the webinars group for LymeX working to develop more trust with government and more ways to implement strategies for new research.

 

Congressman Gottheimer also co-sponsored The Stamp Out Lyme Act introduced by Antonio Delgatto (NY-19-D) which would provide a stamp to benefit Lyme research. The bill has 11 co-sponsors including Smith. The LDA worked on earlier versions of this bill in a prior Congress.

 

“Lyme disease can be brutally debilitating, hard to detect and treat, and cause real long-term health issues. It’s a problem that we must try to solve,” said Congressman Josh Gottheimer. “The federal action I’m announcing today will boost investment for Lyme disease research, incentivize the development of new treatments, and amend federal law to accommodate the health impairments that can be caused by Lyme disease in children, so they can receive the specialized education and care they need.”

“It is imperative that we get help for the thousands of sick Lyme patients — 29% are children. We need Congress to act quickly to not only provide money but to ensure the monies are actually being used to help Lyme and tick-borne disease patients by providing cutting edge diagnostics and treatment therapies for the 20+% who remain sick after a short course of antibiotics. I thank Congressman Gottheimer and the House Lyme Disease Caucus for their continued efforts in this area,” said Pat Smith, President, Lyme Disease Association Inc.

Several Lyme patients and family members spoke about their struggle with Lyme disease. Advocate Dorreen Edwards from Tick Squad in Sussex County spoke on the need to provide more education for schools and for health care providers. LDA partnered with the Tick Squad in 2019 to present a Lyme conference at Sussex County Community College in 2019. Read LDA article on Conference

Terry Duffy, Commissioner, Board of County Commissioners, County of Passaic and Don Weise, New York – New Jersey Trail Conference, also spoke on the issues surrounding Lyme disease.

Watch video of entire press conference on facebook.