Lyme Action Network Celebrates Legislative Victory
The Lyme Action Network, a regional not-for-profit advocacy organization working on behalf of the victims of Lyme disease, celebrated the news that legislation on which they had been working for five years finally passed both Houses of Congress, and is headed to the President for his signature.
The Lyme and tick-borne diseases provisions included in the 21st Century Cures Act will establish a federal Tick-Borne Diseases Working Group under the aegis of the U.S. Secretary of Health and Human Services. The new law calls for broader coordination among federal and non-federal entities in the development of national policy pertaining to this complex issue. The Working Group will be comprised of representatives from such agencies as the Centers for Disease Control and Prevention, the National Institutes of Health, and the Food and Drug Administration, as well as non-federal members including medical providers with experience in diagnosing and treating tick-borne diseases, scientists or researchers with expertise in tick-borne diseases, patients and their family members, and non-profit organizations that advocate for patients.
“Perhaps the most critical section of this legislation lies in the inclusion of fifteen words in the middle of the bill,” noted Christina Fisk, President of the Lyme Action Network. “The bill states: ‘The members of the working group shall represent a diversity of scientific disciplines and views’, which means that, for the first time, the physicians, patients, and advocates who disagree with the Lyme disease treatment guidelines of the Infectious Diseases Society of America will have a seat at the table.”
The disputes between the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS), the professional medical society specializing in Lyme and tick-borne illnesses, are long-standing. “We know without a doubt that the current political bickering is damaging to the patients,” said Fisk. “We expect that a more balanced representation at the highest policy-making levels will lead to more unbiased research, which is absolutely essential. Advances in research will yield better diagnostics and more effective treatments, which is what we all want. Lyme disease is at epidemic levels in many states, including New York. This is an urgent issue, and we look forward to problem-solving initiatives as a result of this legislation.
Chris Fisk and LAN Vice-president and SUNY Adirondack Microbiology Professor Holly Ahern, have been involved in the development and advancement of the legislation since 2011. Prof. Ahern is an acknowledged expert in the microbiology of tick-borne diseases and Lyme disease research and serves as science advisor to Lyme and tick-borne disease organizations across the country. “We worked with Congressman Gibson on this concept, then on his bill as it evolved through many iterations”, said Fisk. “Congressman Gibson stood by the Lyme community through thick and thin as this process developed. We owe Congressman Gibson a huge debt of gratitude for his commitment and perseverance on our behalf.
“Additional thanks to Senators Kirsten Gillibrand, Chuck Schumer, Richard Blumenthal, Lamar Alexander and Patty Murray, and Congressmen Chris Smith, Fred Upton, and Kevin McCarthy, among others. We also thank our colleagues among the Lyme Advocacy leadership for tenacious and skilled advocacy and negotiations, and a big “thank you” to the Lyme community as they jumped on their phones to call their congressional representatives on more than one occasion when called to action.
“This law offers the opportunity for factions that have been in disagreement for twenty years to set aside their “positions” and politics, and come together to allow the highest quality science to be the guide to new solutions for a population in desperate need,” added Fisk.