If you are concerned about CDC’s preferential treatment of IDSA and the harm from CDC’s endorsement and promotion of the IDSA guidelines for Lyme disease, you can help by contacting one of your representatives in Congress with a “constituent request” that asks them to take action on your behalf. You are exercising your First Amendment right to “petition the government for redress of grievances.”
Even though Congress is out of session until January 6, you should send your request now to get it in the queue so it’s at the top of the pile when Congress goes back to work.
You are not imposing or inconveniencing your representatives: It’s part of their job to serve their constituents, which include all U.S. citizens in their state or district. It is also our duty, as concerned citizens, to speak out together and call on Congress for help.
Representatives and senators who serve on key committees generally have the most influence. If you don’t have a preference, choose a senator who sits on one of the following committees.
The Senate Health, Education, Labor and Pensions Committee has jurisdiction over health-related matters. The Senate Homeland Security and Government Affairs Committee handles oversight of government agencies.
Your options for correspondence are snail mail, email, phone calls, and contact forms on the representative or senator’s website. Email is recommended. To find out the best email address, call the office and ask them where you should send your request. Do not send the same request to more than one of your representatives.
LETTER 1. Identify yourself as a constituent. 2. Keep your letter short and focus on key points. 3. Make specific requests that are reasonable. 4. Include links to key references. 5. Request a response. 6. Feel free to use the sample letter at the end of this post but make sure to personalize it.
The fact that you are a constituent, a clear description of the issue, and your specific requests are the most important items. Make sure to include a hyperlink to the CDC petition or the press release. Include a paragraph about the impact Lyme has had on you personally or on someone you know. If you have the information, include a paragraph with details about how the issue affects your state.
The website below takes you to a page with all the contact information for your representative and senators. It has good advice on the content and tone of the letter. A nice feature is that it puts all the contact info in one place, including social media links.
STEPS 1. Create your letter in a word-processing program. 2. Spell-check and proofread it. 3. Visit https://www.nationalpriorities.org/…/know-your-representat…/ 4. Enter your zip code and click “Search.” 5. Review the lists of members of the committees at the end of this document 6. Pick a senator from your state who sits on one of these committees or the one you like most. 7. Call the main phone number to get the email address.
Note: Most of the web pages include a contact form than allows you to bypass email. The disadvantage is that you lose most formatting. If you use this form, make sure to include two return characters after each paragraph. This keeps one line space between paragraphs. Otherwise, it will look like a big block of text with no line breaks. Once you hit “Submit,” the message is sent and you can’t fix it.
8. Copy and paste your letter into your email program and send it. 9. If you do not receive a response in 2 or 3 weeks, call to follow-up and confirm they received your correspondence.
This campaign is not intended to support any pending legislation. Given the entrenched conflicts of interests and long running violations of federal laws and codes of conduct, CDC’s Lyme program needs to be independently audited and reformed to ensure CDC’s participation in any advisory committee is not contrary to the interests of the hundreds of thousands of patients who get Lyme every year, especially those unable to get treatment and insurance coverage as a result of the chronic Lyme denialism and misinformation published by CDC and IDSA.
SAMPLE LETTER Email Subject: Constituent Request for [Senator Name or Representative Name]
Dear [Senator Name or Representative Name]:
I am writing to request your assistance in resolving a concern I have with the Centers for Disease Control and Prevention (CDC) providing preferential treatment to a private organization, and with CDC’s failure to protect the public from one of the most serious threats to public health of our generation.
As you likely know Lyme disease is an out of control epidemic with more than 327,000 new cases each year. When not treated early, patients can go on to suffer lifelong pain, crippling fatigue, and neurological and cardiac problems that can lead to death either from the disease itself or from symptoms so severe that suicide is common.
Despite the availability of more accurate tests, CDC continues to promote an unreliable test that misses almost half the cases, resulting in thousands of patients who are not diagnosed in the early stages of Lyme disease, when it can be most successfully treated.
Recently I signed a “citizen petition” that calls on CDC to end the preferential treatment it extends to the Infectious Diseases Society of America (IDSA).
The petition shows that CDC provides preferential treatment to IDSA by endorsing and promoting IDSA's 2006 guidelines for diagnosis and treatment of Lyme disease while withholding information from the public about more recent 2014 guidelines from the International Lyme and Associated Diseases Society (ILADS).
CDC’s preferential treatment of IDSA harms patients who are misdiagnosed or otherwise denied treatment because of restrictions imposed by the outdated, critically flawed IDSA guidelines.
CDC’s failure to provide equivalent exposure for the ILADS guidelines compounds the harm by limiting access to information about evidence-based treatments that could help these severely ill patients recover from this devastating disease.
In addition to the harm to our health, CDC’s preferential treatment contributes to the financial hardships of patients who must pay out of pocket for medically necessary treatment.
CDC’s preferential treatment could be costing our economy hundreds of millions in increased health care and disability costs.
According to the petition, CDC’s preferential treatment of IDSA also violates the federal law that governs the conduct of Executive Branch employees, which states:
“Employees shall act impartially and not give preferential treatment to any private organization or individual.”
I am concerned to learn that CDC officials, who provide and endorse this preferential treatment, are also members of IDSA, the organization receiving the preferential treatment—a clear conflict of interest.
As a constituent, I request you contact the CDC on my behalf to express concerns about the preferential treatment of IDSA. I would also like a response as to what else you can do to address this issue.
We cannot let the CDC operate above the law to the benefit of a private medical society at the expense of hundreds of thousands patients who are battling Lyme disease.
Lyme patients are suffering tremendously from this terrible injustice and desperately need your help.
Below are links to the petition and a related press release.
Citizen Petition to CDC: End Preferential Treatment of the IDSA Guidelines for Lyme Disease http://tinyurl.com/CDCpetition
CDC Refuses to End Preferential Treatment of IDSA Lyme Guidelines http://tinyurl.com/CDC-IDSA-COI