U.S. Sen. Kristen Gillibrand, D-N.Y., and Blumenthal are co-sponsoring legislation that would establish a federal advisory committee on Lyme issues, consider a uniform reporting system and boost educational and research efforts to limit the disease spread’s and better treat patients.
On August 30, 2012, the US Senators held a hearing at the University of Connecticut Stamford where over 200 peple attended with many sharing heartbreaking stories of their personal experience with chronic Lyme disease.
The pressure for political intervention has been growing over the last decade as doctors have cut back on the amount of antibiotics they give to people who test positive for Lyme leaving the disease only partially destroyed and giving rise to chronic cases that were completely avoidable.
Meanwhile insurance companies grabbed the “Klempner Study” – what many consider a flawed and improperly conducted study that was released in a rush back in 2001 denying chronic Lyme or the need for extended antibiotics to deny care to people who desperately need it.
Unfortunately the affected victims are in no shape to fight for help – in fact they can barely help themselves with the very basic physical requirements of life. This makes it almost impossible to fill conference rooms or to participate in demonstrations or fundraisers. It has taken years for legislation to be pushed to the very first stage of becoming law, that is being heard in Committee, and many despaired that even the weakest bill would ever make it through both houses and signed into law.
There has been tremendous excitement about this hearing, but unfortunately given the upcoming presidential election and the end of the legislative year approaching Senator Blumenthal said moving the legislation forward during the current session of Congress is unlikely.
However outreach efforts around the bill have helped focus attention on the clash between patients who have debilitating Lyme-like symptoms and members of the medical establishment who dismiss the idea of chronic Lyme disease.
Actually this is all happening at a great time when the basis for the IDSA’a stance on chronic Lyme is being challenged by credible researchers around the country. It is also happening at a time when an accurate test has appeared that will be essential for any kind of accurate record keeping.
We need to be thankful for the attention chronic Lyme is finally getting at in Congress as wel as the doctors who are looking at the research rather than the IDSA guidelines. We need hope where ever we can find it!
“This is very powerful and compelling evidence of the need for better diagnostic tools,” Blumenthal said. “The suffering, anxiety, pain, and the loss of productivity should help drive and embolden the push for legislation.”
Medical authorities and the federal Centers for Disease Control advocate against long-term antibiotic treatment for Lyme disease; symptoms persisting beyond two to four weeks are generally viewed as likely due to non-Lyme related causes.
Hard to believe, isn’t it?