"I am delighted to announce this important milestone in the years-long effort to combat Lyme and tick-borne diseases," said Congressman Chris Gibson (NY-19). "This legislation is the first-ever standalone bill to address Lyme disease. I deeply appreciate the support and advocacy of the many citizens who speak out on this issue every day, especially Pat Smith and the members of the Lyme Disease Association. I look forward to passage of this bill by the full House, but I will not relent in our fight for improved research, treatment, and prevention of this public health scourge."

The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress including "a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections.... "    

The battle for passage of this bill began early this year when LDA met with House leadership to present objections to a vector-borne diseases bill from being introduced in the House Health Subcommittee that would have covered Lyme disease but had no representation at all from patients and physicians and would not have covered other tick-borne diseases because of incidence rates.  The LDA provided language changes which provided patient input and transparency. The bill was brought before the Subcommittee, but an amendment in the nature of a substitute was offered and passed out instead-a substitute that was dangerous for patients.

The LDA led a nationwide campaign to bring back patient friendly language and had a letter signed by 154 groups nationwide stating what was necessary from a patient perspective which was sent to all of the Members of the Energy & Commerce Committee. We then worked with Mr. Gibson and the Committee to change the language to produce a bill which will help provide a research agenda for Lyme and other tick-borne diseases including evaluating chronic or persistent infection and co-infections.

"This bill provides recognition that research is needed for Lyme disease and all tick-borne diseases and provides for a structure where the ultimate stakeholders, Lyme patients, will finally have a voice at the table in a transparent setting" said Lyme Disease Association President Pat Smith. "Additionally, the inclusion of  'chronic or persistent infection' finally allows that to be more fully examined as part of the federal research agenda."

The LDA thanks Mr. Gibson, bill sponsor; Mr. C. Smith; and Mr. Upton and all of the Committee members who supported the bill. We also thank our partner groups who were instrumental in the effort to pass this legislation, and all Lyme groups across the country, patients, and other groups who worked on this effort. The next step for the bill is to go to the House floor, which will probably occur sometime after the summer Congressional recess.