Patients Will Have a Seat On the Tick-Borne Diseases Working Group
The US Senate passed the 21st Century Cures bill which included Lyme language. After days of discussion on the Senate floor about numerous provisos in the huge health care initiative, and stalling on the floor, a vote was called for and the Senate amendment including Lyme passed 94-5. The five Senators who voted no on the Cures Act are Sanders (I), Wyden (D), Merkley (D), Lee (R), Warren (D).
President Obama, in his weekly address on December 3, called upon the Senate to pass this important legislative package just as the House had overwhelmingly done on November 30.
The LDA and other groups worked up until the US House Rules Committee met on November 29 to change language which would have been bad for Lyme patients, who would not have had a seat at the table of a federal working group, something they have long been denied
despite their long held commitment to the best science.
According to Lyme Disease Association President Pat Smith, “We have worked for many years to get chronic Lyme recognized, as probably 20% or so of patients develop it after short-term treatment. The government agencies have not recognized those individuals with chronic symptoms, and along with certain groups who have exclusively promulgated Lyme treatment guidelines that only permit short-term treatment, they have shut out from the deliberations in DC the most important stakeholder group, patients, along with advocates and treating physicians.”
She added, “these stakeholders will provide input into the research choices necessary to help all Lyme patients – research then funded by the agencies. Much of the past research funded ignored the plight of those with chronic disease, and discounted the research that so clearly demonstrates that the spirochete may survive current recommended treatment regimens.” Not only does this bill allow for those stakeholders at the table, but also it requires a diversity of “scientific disciplines and views,” the latter which was almost a deal breaker during Lyme language negotiations.
We are grateful to Senator Lamar Alexander (TN) and Patty Murray (WA), Senate HELP Committee Chair and Ranking Member, respectively, for helping to get this “Cures” bill passed.
We also thank Senator Richard Blumenthal (CT) and Senator Kirsten Gillibrand (NY) for their support in earlier Senate efforts on Lyme disease.
In the House, we thank House Majority Leader Kevin McCarthy, Chairman Fred Upton of the Energy & Commerce Committee, Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus, and Congressman Chris Gibson.