Senate & House Lyme Bills: $100 Million for Lyme Research & Education

Senate & House Lyme Bills: $100 Million for Lyme Research & Education
National Lyme Disease Association Announces Support for Bills
Nearly 90 Lyme groups supporting measures

The bills direct the U.S. Secretary of Health and Human Services over a 5 year period to include development of a sensitive and accurate diagnostic test; improved surveillance and prevention; and clinical outcomes research to determine long-term course of illness and effectiveness of different treatments. They establish a Tick-Borne Diseases Advisory Committee to ensure interagency coordination and communication, among federal agencies, medical professionals, and patients/patient advocates.

“These bills are outstanding pieces of legislation that addresses chronic Lyme disease, an area often neglected by government and physicians alike,” stated LDA President Pat Smith. “Now we have the same legislation introduced in both the US Senate and US House of Representatives with a comprehensive set of goals designed to help Lyme patients receive early diagnosis and appropriate treatment and to help in the development of education and prevention programs. As a result of the introduction of the bills, we are one step closer to realizing a federal law for Lyme disease and we thank Senators Dodd and Santorum and Representatives Smith and Kelly for their commitment to making this happen.” She indicated that the next step is to have patients contact their senators and representatives to co-sponsor these bills.

Nearly 90 organizations nationwide including all LDA chapters and affiliates have signed on to a letter to support the bills. Internationally acclaimed author Amy Tan, Joy Luck Club, author Jordan Fisher Smith, and E. Jean Carroll, part of LDA’s Literati with Lyme team (see www.Lyme literati.org) support the bills. All three authors have Lyme disease, and Tan and Fisher Smith have discussed their personal experiences in their books. “As yet another patient with Lyme disease, I personally look to these bills as my hope for the future” Ms. Tan states. “For the rest of this country, this bill represents the first reality-based plan for dealing with an epidemic that must be stopped. It is a devastating disease–one that is widely misunderstood, even within the medical community. Lyme is not simply temporary arthritis. Lyme can quickly become a brain disease with lifetime consequences. The Lyme bacterium is a more clever bacterium than previously thought. It can transform itself.”

Ms Tan also questions why the disease is spreading so quickly in nearly every state and so many of its victims go undiagnosed, and why treatment fails in a proportion of late-stage patients. “If the disease goes unchecked, will we soon face a costly medical crisis nationwide,” Tan said. “Research is our war plan against Lyme disease. It is the only way we will be able to detect, combat, and destroy a bacterium that has spread to nearly every state in the union.”

The International Lyme & Associated Diseases Society (ILADS), a professional medical society, also endorses the bills. The Society consists of treating physicians and other health care providers for chronic Lyme disease (see www.ILADS.org). ILADS is particularly concerned about the vast number of doctor-diagnosed cases which do not fit the CDC surveillance criteria and are never able to be reported, thus leading to an inaccurate picture of actual case numbers and distribution. These bills ask for reform of the diagnosis and reporting system.

LDA urges people to contact their U.S. Senators to co-sponsor S.1479 (Dodd/Santorum) and their US Congressmen to co-sponsor H.R. 3427 (Smith/Kelly). Please visit the LDA website for more information www.LymeDiseaseAssociation.org. See https://thomas.loc.gov/ for bill text and https://www.visi.com/juan/congress/ to locate contact information for your congressmen and senators.