On January 26 and 27, Lyme patients and patient advocates from around the United States will join together and call on Congress to take decisive action to address the out of control epidemic of Lyme disease and related tick-borne illnesses.
We are concerned about CDC’s failure to contain this epidemic, and we are concerned about conflicts of interest and violations of federal law that contribute to the preventable suffering of thousands of chronically ill patients.
We are especially concerned that CDC continues to provide preferential treatment to the Infectious Diseases Society of America (IDSA) by promoting the 2006 IDSA guidelines for Lyme disease, which are noncompliant with federal standards, while withholding information from the public about the 2014 guidelines from ILADS, which are compliant with current standards and reflect the best available science.
Especially disturbing is that the CDC officials providing the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a serious conflict of interest.
CDC’s preferential treatment harms many thousands of chronically ill patients, who are misdiagnosed and denied medically necessary treatment due to restrictions imposed by the IDSA guidelines. Many thousands of chronically ill patients face financial hardships from out-of-pocket costs and lost income. The burden on our economy is enormous, the suffering is widespread, and much of this is preventable.
You can make a Difference
It’s easy and takes less than 10 minutes. All you need to do is make three phone calls: one call to each of your U.S. Senators, and one call to your representative in the U.S. House.
Senate staff have reported that telephone calls make a much stronger impression than email, because emails can easily be automated. They say getting 100 phone calls on a topic in a single day is considered “a lot”. We can do that…and much more.
To Find your Representatives and Senators, go to: https://www.nationalpriorities.org/take-action/know-your-representative/
For sample scripts to read from, go to: https://www.facebook.com/events/1739734586248693
The event has pinned post with a photo of a phone. After you have made your phone calls, “like” the photo. The number of likes will provide a real time counter to monitor the response. Also, post the name of your state, so we can gauge the response in each state.
Ask your friends, family and neighbors to participate. If they are not on Facebook, email this information to them. To make it easy for neighbors, print copies of the script with the telephone numbers. Ask if they are willing to spend 10 minutes to make three phone calls that will help provide a wakeup call to Congress to act decisively to address this out of control epidemic.
This campaign leverages three Change.org petitions, with more than 65,000 combined signatures. Please sign them to show your support.
End Preferential Treatment of the IDSA Guidelines for Lyme Disease petition to the Centers for Disease Control and Prevention http://tinyurl.com/CDCpetition
Calling for Congressional Investigation of CDC, IDSA & ALDF petition to the U.S. House of Representatives, U.S. Senate https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf
Legalize Lyme Disease petition to President Barack Obama, U.S. House of Representatives, U.S. Senate https://www.change.org/p/president-obama-and-congress-a-call-to-legalize-lyme-disease