Remarks of Pat Smith, President, Lyme Disease Association to Gear Up for Lyme (VT) 2011
I am sorry not be able to be with you this year at Gear Up for Lyme, as I have been since its inception. I have asked Dr. Stephanie Holzman to speak on behalf of the Lyme Disease Association at this inspiring event dedicated in part to ending the plague of Lyme disease which has swept across the US unabated since the first case was recognized in 1975, about 36 years ago.
In 1990, Vermont had 11 reported cases of Lyme disease and the US had 7,943 reported cases. In 2009, the Centers for Disease Control & Prevention reported 408 cases of Lyme in Vermont and 38,468 in the US. Lyme is underreported by a factor of 10, meaning Vermont cases were over 4,000 and the US cases were almost 400,000 in 2009.
Yet the government has not proposed any plan to deal with the rising case numbers, nor have they been willing to expend monies to solve the problem. The same tests that were used when case reporting began are still used to determine who has the disease—tests which utilize antiquated technology when cutting edge technology is being used in other diseases. Current testing is less than 50% accurate and people can test negative with the current blood test and still have the disease. The problem is, doctors are diagnosing based on the faulty tests, and insurance companies will generally only pay for treatment based on the tests.
We have patients across the country, across the world, who are falling through the cracks. They are sick. They have no place to get diagnosed and treated. They are out of work, out of school. No one will help them.
The Lyme Disease Association is an all volunteer national non profit that is working hard on behalf of patients. We work to raise monies for educational programs and brochure distribution—we have distributed almost 2 million pieces of literature to date—we help children to get diagnosed and treated through LymeAid 4 Kids, which has currently disbursed close to $200,000 nationwide for children without insurance coverage for Lyme—and we raise monies for research.
To date LDA has raised over $5 million for our efforts against tick-borne diseases. The Manchester Rotary has become a partner in that effort by hosting this annual Gear Up Bike Climb. LDA has opened a research center at Columbia University to help find better diagnostics and a cure for Lyme disease, and funds from this event have gone to that cause. This year, Columbia announced the beginnings of a tissue bank, which LDA started by financing a special freezer. Gear Up monies were used toward that project.
Everyone here should be proud that they are contributing to get answers to a disease which is preventing many people from enjoying the great outdoors, a disease which is stealing childhood from our children, a disease which the medical and government establishment have chosen to ignore. Your participation here signifies continuing health, and all of us want that to continue, so we work together to be able to say in the near future, we have taken back the outdoors, they are ours again to enjoy without the threat of Lyme disease. Thank you.