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 non compliant 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. Mmany 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.
Members of Congress are called “representatives” because their job is to represent the interests of their “constituents.” You are represented in Congress by two senators from your state and one representative from a district within your state.
When you request action from a government agency or Congress you are “petitioning” them, whether your request is via a letter, phone call, in-person meeting, or signature on a formal petition. By participating in this campaign, you are exercising your First Amendment right to “petition the government for redress of grievances.”
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.
You can find the phone numbers for your representatives at this website: https://www.nationalpriorities.org/take-action/know-your-representative
Sample scripts are available on the Facebook page for the event at 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.
Spread the Word
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
Calling for Congressional Investigation of CDC, IDSA & ALDF petition to the U.S. House of Representatives, U.S. Senate
Legalize Lyme Disease petition to President Barack Obama, U.S. House of Representatives, U.S. Senate