Congressional call for Lyme disease research

Debate on the plight of Lyme patients, chronic Lyme disease, and the failure of Mr. Pallone’s health sub committee to bring up the Lyme bill, HR 741 (Smith NJ).

Click to view the C-Span coverage courtesy of Lymerights.

The National Capital Lyme Disease Association, with Founding Sponsor Turn the Corner Foundation, was pleased  to host the Congressional Luncheon Briefing on Lyme Disease on Wednesday, September 24, 2008. 

We want to offer our heartfelt gratitude to all of you for your support, in whatever form - emotional, financial or active participation through letters, congressional visits and phone calls - over these weeks leading to the luncheon briefing on Capitol Hill.  Thanks also, to Turn the Corner Foundation for making this possible with its generous support. 

The goal of the briefing was to provide education and increased awareness in Congress of the growing Lyme epidemic and to suggest the need to establish a new Congressional record.  Congressional hearings would provide a firm and informed basis for decisive federal action on behalf of all tick-borne disease patients.  Wednesday’s program conveyed the need for comprehensive research reflecting the entire spectrum of the medical community and for careful government oversight of the research process until these infections are conquered.  

By all accounts and measures, it was a success!  We had over 100 in attendance.  We had it filmed and hope to have the program on our website by the end of next week.  It was also covered by our local ABC television station.  If you want to see it click on this link: http://www.wjla.com/news/stories/0908/556184.html 

Keep  in mind that our goal was to convince Congress of the depth of human suffering and loss of productivity caused by Lyme disease.  We wanted Congress to know that the controversy surrounding diagnosis, treatment and the existence of chronic Lyme has created a gridlock that requires their attention and action with an in-depth Congressional hearing and continued oversight. 

Andy's film was beautifully edited to present the most important points.  Viewers were left with  a clear picture of the opposing camps’ thoughts and behaviors.  Most poignantly, however, it conveyed the suffering of patients left wounded on the battlefield.  The audience was extremely attentive! 

Pam Weintraub delivered that missing middle piece - the independent, uncontaminated science - and with passion and eloquence, challenged Congress to investigate fully, but not to allow it’s investigation to degrade into a "he said/she said" between the opposite extremes that would go nowhere.  She encouraged Congress to give hearing to the vast uncommitted central ground of scientists who are studying tick-borne diseases, where real strides are being made to unravel the mystery of these pathogens. 

Pam and Andy both have given us so much more than a book and a film — they continue to sacrifice their time, and invest their careers, to advocate for us.  Our gratitude for that is immense! Dr. Samuel Shor, who is highly regarded among his colleagues as well as the community (Washingtonian's Top Doctor List), spoke about his transition of discovery from IDSA treatment to that of ILADS.  He gave examples of misdiagnosed case studies where he came to understand that many patients diagnosed with other diseases were, in reality, suffering from Lyme.  He shared his experience with the effectiveness of the ILADS treatment approach. 

Dr. Robert Mozayeni, who has both Yale and NIH on his resume, briefly discussed co-infections and the dilemma of trying to diagnose Lyme in the typical short examination time allotted to each patient.  He emphasized the need to listen and remain open-minded to the nuanced and ever-changing world of science. 

We were told not to be surprised that Hill people would come, eat and run.  In fact, very few left, even though it lasted longer than the allotted hour and a half.  Many took notes.   

But what we want you to understand today is the critical role YOU played in this project!  Those phone calls you make to your legislator - you think they don't matter?  Take note:  When we were delivering information to the offices, one of our volunteers walked into the office of a South Carolina legislator and upon announcing who she was and why she was there, she was greeted with "Oh, I was just on the phone with one of our constituents, and she was telling me about her struggles with Lyme.  Count me in.  I'll be at your briefing!" 

During our visits to the congressional offices, we encountered many staffers who were personally affected by Lyme.  We believe that these experiences are going to lead some to read the book and view the DVD, then hopefully they will be shared with others.  Pam's book is now on their book shelves and will be more likely used as a resource when questions arise. 

The clincher on this is the LETTERS you wrote.  They were transcribed on stationery and all were placed in envelopes addressed to your  legislators.  Some were delivered Wednesday and the remaining will be delivered next week.  Every single Senator and Congressman   is receiving a book and a DVD due to your generosity. We know that many of you made a real sacrifice to do this.  Without your participation we would not have reached our goal. 

Congressman Frank Wolf (VA), HR 741 co-sponsor, called Mr. Pallone on the carpet for burying Smith’s vital bill, which addresses the exploding Lyme disease epidemic sweeping the nation. In an impassioned plea, Wolf repeatedly called for Congressman Smith’s bill to be brought up for action. He spoke of the increase in cases in his own state of Virginia and pointed out that Mr. Pallone comes from a high incidence area himself, New Jersey.  Mr. Pallone responded that Lyme disease is a serious issue that requires a lot of study, since some doctors and his neighbors who are doctors have said antibiotic treatment can be dangerous, even cause death.  

Congressman Frank Pallone indicated to the Lyme Disease Association (LDA) that he would bring up the bill before his committee in 2008.  After the IDSA lobbied congressmen in DC, Pallone refused to post the bill for any action in committee, saying we have to wait for the IDSA to reconsider its Lyme disease treatment guidelines under the settlement with the Connecticut Attorney General, effectively putting the disposition of the bill in the hands of the IDSA.   

Since that time, volunteer patient advocates have worked together and continued to educate Mr. Pallone and Congress about the science supporting chronic Lyme.  In April, the LDA held two congressional briefings in DC, and in September, LDA and National Capital each held a briefing in DC.  

Congressman Wolf entered into the Record the effects of Lyme disease on his district and the nation, describing in detail various complications associated with Lyme and the consequences of not being adequately treated.  He reported Lyme case numbers have risen dramatically in his state, and he knows his constituents are suffering due to Mr. Pallone’s actions. 

Congressman Christopher Smith then rose and laid out the rationale for action – vast underreporting of case numbers, misdiagnosis, inability of patients to get treatment and insurance reimbursement.  Mr. Smith then stated that his bill does not address treatment, but will provide a federal  advisory committee and  funds for much needed research to determine the status of chronic Lyme disease, that there is a companion bill in the Senate, and the House version has over 112 co-sponsors.

Mr. Smith said he personally knew many Lyme patients who were seriously debilitated due to chronic Lyme, and he described how patients were unable to be treated due to the treatment guidelines for Lyme disease published by the Infectious Diseases Society of America (IDSA) −a Society which has been investigated by the Attorney General of Connecticut for conflicts of interest in the guidelines’ development. Mr. Smith read into the record excerpts from the AG’s action and settlement where the AG mentioned the conflicts and also the lack of all the science of Lyme disease being presented.  Mr. Smith also indicated that he believed a cover up of chronic Lyme exists. 

Mr. Pallone called both Congressman Smith and Attorney General Blumenthal, “grandstanders,” and implied the AG was interfering rather than helping this situation.   

Wolf & Smith demanded a hearing or some action on the bill; Smith cited a letter from the House Lyme Caucus of which he is co-chair, to Mr. Pallone.  Although the Congressional session is ending, a lame duck follow-up is still a possibility.   

From the early days of educating representatives through massive letter writing campaigns, phone calls, petitions and countless personal visits to Washington DC offices, to the many rallies, protests, scientific presentations, formal gatherings and Congressional briefings, we are now seeing that the goals we set years ago are within our reach.  We have reason to celebrate.   We will provide updates as they become available – please stay tuned and be ready to take action if needed.

Text courtesy of Pat Smith, President, Lyme Disease Association