The following call-to-action is from the Oregon Lyme Disease Network, regarding proposed Lyme-related legislation.
Oregon Lyme Disease Network— SB916
** CALL TO ACTION # 4 for the House Committee On Health Care **
INSTRUCTIONS FOR WRITING YOUR REPRESENTATIVE
Feel free to copy the text between the solid lines, using it as the beginning of your letter, or you can do your own. Please include the request which is the last paragraph before your story. Remove any print in red and fill in your information.
Please click on your Representative’s email address, below, which should then open up his/her email. (If not, copy their email address into the ‘To’ line of a new email.)
If you don’t know who your representative is, click here for more information.
Please copy this list of the health committee member’s emails and place it in the CC line
Rep.MitchGreenlick@state.or.us; Rep.RobNosse@state.or.us; Rep.email@example.com; Rep.JohnLively@state.or.us; Rep.CedricHayden@state.or.us; Rep.BrianClem@state.or.us; Rep.AlissaKenyGuyer@state.or.us; Rep.BillKennemer@state.or.us; firstname.lastname@example.org; email@example.com
In the Subject Put: SB 916– PLEASE AMEND Before vote
Please cut and paste the letter below
Dear Representative (put your Representatives name here),
I am writing today because we have a very important bill which would affect many Oregonians. As you know, Governor Kate Brown recently proclaimed May as Lyme Disease Awareness Month. In fact, her proclamation states human caseload may be as high as 800 cases per year. Many physicians in Oregon do not consider a diagnosis for Lyme disease, even when early symptoms are present. When not caught early, many patients will develop late stage Lyme disease which is far more difficult to treat and often accompanied by chronic, debilitating and costly conditions, often without insurance coverage.
I am one of those patients. We are asking you to consider re-amending the bill after reading the information below.
Please take some time to hear the Senate testimonials on this Video of Testimony in Senate .
While all the testimony is important, we understand it is lengthy. Please be sure to review the following which clearly outline our concerns:
- EXHIBIT 1-10: Theresa Denham, Lyme Disease Network Task Force 15
- EXHIBIT 19-20: Beth Schultz, patient, Lyme Disease 00:59:36
- EXHIBIT 21: Mike Dewey, patient, Lyme Disease 01:02:37
- Compare this patient’s outcome with the above testimony due to his wife’s inability to get care: EXHIBIT 22-26: Chris and Kara Chytka, husband and patient, Lyme Disease 01:09:10
- Why we believe Oregon is failing to recognize the seriousness of our Lyme disease problem: EXHIBIT 27-28: Sharon Lee, patient, Lyme Disease 01:13:444
It is important to know that the IOM/NAM (Institute of Medicine / National Academy of Medicine) is a branch of the National Academy of Sciences. One of its key purposes is to provide unbiased and authoritative advice to decision makers and the public through evidence based guidelines.
The original bill was amended in the Senate. Essential aspects were removed that were intended to provide beneficial care for Oregon Lyme disease patients. We need the House to add the following important language
- SB916 shall be re-amended to allow a physician, with informed consent from patients, to use any guidelines that use IOM, PRIZM or NGC developed criteria for treating Oregon patients, when considering the diagnosis and treatment of Lyme disease and co-infections.
- The study needs to be well defined before voting and should include asking the question: Why are Oregon patients able to get properly diagnosed and treated with better health outcomes outside of Oregon versus their lack of diagnosis and care for their Lyme disease within Oregon?
Study participants should be equally represented and include members of:
- Oregon Medical Association
- Oregon Naturopath Association
- IDSA (specialty society)
- ILADS (specialty society)
- Oregon Lyme Disease Network (Patient Advocacy)