Thankful
Published on Nov 28, 2016
LymeLight Foundation grant recipients share about their treatment grants and describe symptoms of Lyme disease.
Archive for the ‘Uncategorized’ Category
Breaking Lyme Bill News!
November 30, 2016
Lyme community leaders are pleased to announce that language on tick-borne diseases (TBD) will be included in the 21st Century Cures Act (the House Amendment to Senate Amendment to HR 34). The inclusion of this language was achieved after 2 days of intense negotiations with Congressional offices. The language will be included in the House version of the bill which is expected to pass easily due to its broad bipartisan support. The signatories listed below mutually agreed upon the new TBD language that will now be included in the bill.
Yesterday and early today, Leaders put out calls to the community to have them contact their federal Senators and Representatives to pull out congressionally proposed Lyme language that would have contradicted the bill’s intent. Thank you all for those efforts. Congressional leaders responded by indicating a willingness to work with the Lyme community. That effort was successfully concluded at 5pm today when the Rules committee met and the proposed language agreed upon by both sides was incorporated into the large 21st Century Cures amendment legislation.
We would like to thank House Majority Leader Kevin McCarthy, Chairman Fred Upton of the Energy & Commerce Committee, and Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus, for their efforts to make this happen. We also thank Congressman Chris Gibson whose work in having Lyme language inserted into the original Cures Act which passed the House enabled us to move forward with this groundbreaking effort. A vote on the Rules portion and then on the Managers Amendment will take
place Tomorrow Wednesday, midday, and will be broadcast on CNN. Final times will be available in the AM.
Patricia Smith, President, Lyme Disease Association, Inc.
Jill Auerbach Chair, Hudson Valley Lyme Disease Association
Phyllis Mervine, President, LymeDisease.org
Ira Auerbach, Hudson Valley Lyme Disease Association
Christina T. Fisk, President, Lyme Action Network
David Roth, Founder of Tick Borne Disease Alliance and Global Lyme Alliance
Bruce Fries, President, Patient Centered Care Advocacy Group
Holly Ahern, Vice President, Lyme Action Network
Dorothy Leland, Vice President, LymeDisease.org
Timohy Lynagh, Board Member, Lyme Disease Association, Inc.
Stand Down
ILADS
International Lyme and Associated Diseases Society
As a result of strong lobbying efforts by Lyme advocates across the country, ILADS doctors and the community, House Representatives have entered into negotiations with the Lyme community to modify the amended language. This language is currently being negotiated as I write this email.
The new language is more in line with Chris Gibson’s bill and we are carefully analyzing it at this time. It appears that a consensus may be on the horizon. It is with that in mind that I request that everyone stand down until the final language is determined.
Thank you for your efforts in encouraging the physicians to weigh in. Without the call to action from the entire community working in concert, these negotiations would likely never have taken place.
Best,
Susan
Susan R. Green
Attorney-at-Law
Lyme Cases 400,000
The Lyme Disease Association (LDA) reports that the total number of Lyme cases in the US is now approaching 400,000 per year.
The report is based upon the just released CDC’s MMWR final reported Lyme
case numbers for 2015.
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The three states with the highest case numbers are from the Mid-Atlantic region: Pennsylvania, New Jersey and New York. These three states constitute 48% of the Lyme case numbers in the US. LDA president Pat Smith said “Lyme case numbers continue to surge, yet government is doing little to combat this massive epidemic, which destroys families and costs lives.”
The LDA has ranked the top 15 states based on those CDC reported Lyme case numbers.
The table below has state, followed by CDC reported number, and the number
adjusted by a factor of 10 for underreporting.
Total US
38,069 – 380,690
1. Pennsylvania 9,048 – 90,480
2. New Jersey 4,855 – 48,550
3. New York 4,314 (combined NYC & upstate) *43,140
4. Massachusetts 4,224 – 42,240
5. Connecticut 2,541 – 25,410
6. Wisconsin 1,894 – 18,940
7. Minnesota 1,805 – 18,050
8. Maryland 1,728 – 17,280
9. Virginia 1,539 – 15,390
10. Maine 1,201 – 12,010
11. Rhode Island 904 – 9,040
12. Vermont 710 – 7,100
13. New Hampshire 529 – 5,290
14. Delaware 435 – 4,350
15. Iowa 318 – 3,180
* Many counties (19 in 2014) in New York State investigated a sample of
positive laboratory results. The number of Lyme cases was then extrapolated
to generate estimates of the total number of cases in that particular
county. The CDC says it cannot publish averages, thus many counties in NY do not have their numbers reported out by CDC. The LDA does not know how many NY counties in 2015 are contained in the CDC numbers above.
Madison Area Lyme Support Group 