Remarks of Pat Smith, President, Lyme Disease Association, Gear Up for Lyme (VT) 2014
Welcome and thanks to all of you who participated, organized or supported the bikers in this race today and the past 10 years. Since the first race in 2004, the Manchester Rotary has raised a total of more than $71,000 for the LDA for its Lyme disease programs. I am so sorry not to be here with you today and glad that Dr. Woolrich-Holzman is able to relay this information to you. I am not present today primarily because of a tremendous fight I have been a part of for 30 years, Lyme disease advocacy. The past 6 weeks, there has been a little known battle taking place between Lyme advocates and Washington DC. There was a bill in Congress for more than a decade which was good for patients, which would have created a federal advisory committee for Lyme. For political reasons, the bill was scrapped by Congress and a new damaging one proposed earlier this year. LDA met in DC to change that bill into something that was protective for Lyme patients. After negotiations, all parties agreed to bill passage. The day of the vote, a half hour before, a new totally different substitute bill dangerous to patients was proposed and voted out of the House Health Subcommittee. That was June 19. Since then, the LDA with help from its associated groups, led a nationwide effort to again remake the bill. We were successful in getting 154 groups signed onto a letter sent to each of the 54 members of the Energy & Commerce Committee. It contained what we as a Lyme community needed in a bill to not oppose it. They would hear the bad bill next and we needed to influence them not to accept that bill. Numbers talk, and they were impressed with our group numbers and the rationale we presented.
For me, the past 6 weeks have been dedicated to the passage effort, day and night. If you are frustrated watching on TV how Washington acts, you would be horrified at what occurs to just get a working group with federal agencies, patients and advocates, physicians who treat Lyme and researchers who understand it at the same table to provide information into the development of a federal research agenda. Other diseases have had these working groups established for years. On the morning of July 30, I watched on line with bated breath while the entire Committee of 54 went through the same process which had killed our bill in the smaller subcommittee. This time, the same dissenters spoke, but the bill went through with a voice vote. It still has a long way to go, beginning with a trip to the House floor for a vote after Congress’ summer recess is over. If the bill makes it through there, it then must go to the Senate. We have to be vigilant throughout the entire process to ensure no changes are slipped into the bill.
This effort has been repeated by many in states across the country, including Vermont this year, getting legislation passed to protect physicians treating Lyme disease. One might think that fighting a disease is done in the laboratory, and that is usually true; however, with Lyme disease, much of the fighting is done in the political arena, to get the disease accepted, to allow treatment. The fact that the CDC announced last year that 300,000 new cases of Lyme occurred in 2013 and that there are more than 15 tick-borne diseases now in the US, would seem to spur government to be more rather than less proactive against the disease. Unfortunately, there are powerful vested interest who have the time, money, and people fighting against patients’ getting diagnosis and appropriate treatment.
Besides the Lyme bill passage out of Committee, another positive for patients happened this week. The International Lyme & Associated Diseases Society, ILADS, doctors who believe in and treat chronic Lyme, published in peer review their new long-awaited clinical guidelines for treating chronic disease. So today, please help us celebrate these hard fought victories for Lyme patients by helping yourselves remain physically fit and at the same time, raising funds for Lyme disease research. Thanks to the Rotary, the Holzmans, and to you from the LDA and the Lyme Community..