Bill supporters in Washington and beyond have been ecstatic all week, since Washington Lyme Disease Advocate and Bill co-auther Dan Boeholt’s announcement that WA Bill 5448 (a Bill to Recognize Chronic Lyme Disease) has passed unanimously on the Senate floor and moves to House Hearing!  I had high hopes for this Bill being supported, but unanimous support is incredibly encouraging.

In addition to announcements from Dan and other supporters, the March 3rd unanimous vote received positive coverage in The Daily World.com.  The article describes the current bill language, as well as Boeholt’s desires that other treatments, in addition to antibiotics, be addressed as well.

You can continue to watch for updates from Dan at the Ticked Off On Lyme WA Facebook page, as well as this Bill Information page and other legislative links at the bottom of this post.

*Please quickly double check one or both locations if you are reading this after the second week of March to see if the hearing noted below has already occurred, at which time different action may needed rather than this current step.  The hearing could reportedly occur between March 12 and April 1.

How to Help

If you haven’t yet supported Washington state’s proposed Chronic Lyme Bill, you are just in time to quickly help with the next needed round of support (the last round being emails to all Senators). If you’ve already written directly to the Health Care and Wellness Committee Representatives, that is excellent–you are all caught up (so far).

*There is no longer a need to write to the Senators as previously requested, since the Bill has now moved to the Senate floor.  Please write the 15 Committee members at this time.

For quick reference, there is information below so you can easily:

1. Look over the summary or draft of the Bill;
2. Copy an example message into an email or write your own;
3. Paste the Committee’s email addresses into the bcc box;
4. Send your email (and perhaps save a copy for friends/family to refer to);
5. Send a note to friends and family asking them to quickly do the same.

Excerpts from Facebook posts by Washington patient and advocate Kristine Moden included in later sections contain a heartfelt request, background, email addresses, instructions, and an example/form letter.  Those pieces combined, or a clear and concise Facebook post from Kristine (here) are a convenient option for reaching out friends and family.

Why to Help

This Bill is important for Washington state residents and non-residents, and not just those currently infected with Lyme.

If you recreate or work outdoors or  you have a pet or a yard (or leave your house at any time) it may some day matter to you or a loved one that there be adequate care available where you live.

If you live in another state (as I do, though I am native to Washington), it is still worth your time to support this legislation on behalf of patients everywhere who are fighting for better diagnosis and care for Lyme disease.  Successes in each state contribute to efforts elsewhere, awareness in general, and addressing the current urgent need for change.

About the Bill

The current Bill is described in the summary below, “From Substitute Bill Report, Mar. 3” and the initial Bill, applicable when letters were previously written to all senators, is described in the summary “From First-Reading Bill Report, Feb. 2” (included for reference or comparison, particularly for those writing second letters).

The following resources and excerpts provide further information and history regarding this Bill so far:

• A list of relevant links (end of post),
• The Daily World.com article (mentioned earlier),
• The initial and current bill summaries (below and Bill Reports),
• Testimony summary (below and Bill Reports),
• Previous posts (listed at end post).

Kristine Moden (WA State Lyme Patient) Facebook Posts/Instructions:

*Excerpted and posted with permission

WA Lyme Bill 5448, has moved to the Senate Floor. It’s moving but we still need your support!

Good news. WA Lyme Bill SB 5448 has already moved to the senate floor. This happened on March 3rd, earlier than the expected March 11th deadline. The battle is still not over though. We still need emails sent to support the bill, this time to Representatives. We are waiting on a hearing date in Olympia, WA. I don’t know if I’ll be able to make it myself due to my health but I’m going to try my hardest. Your emails are very important. The bill is moving but we still have a long way to go. Again, if it’s not too much trouble, I ask residents and non-residents to email the form letter below and BCC the list of Representatives. If you haven’t sent an email yet to the Senators please disregard my previous email because the bill has already moved to the Senate Floor and we now need to send emails to Representatives on the Health Care and Wellness Committee. This is a new group of people, 15 only. Contacting them would make a tremendous impact and is very much needed. Thank you so very much for being a part of this and for your help in making the WA state Lyme Bill a reality. I never thought in a million years that this would occur and am very excited that it may finally happen. Thanks to Dan Boeholt, an Aberdeen, WA resident, and co-author of the bill. If it were not for him, this bill would never have been created. Thank you so very much to Dan and to all of you for your support!! Kristine

Kristine’s Instructions/Request:

Hello Everyone,

Can you take a moment and send an email to support WA Lyme Bill 5448 Recognizing Chronic Lyme Disease. The list of Representatives who are on the Health Care and Wellness Committee are below. I’ve written a short form letter but it pertains to me so you will need to change it a bit. BCC instructions just as we did with the NY and MA bills are also below. State by state we’ll get there!

Instructions: In the subject line title the email: Please support Lyme Bill SB 5448 Recognizing Chronic Lyme disease. Copy and paste the below Representative list into the BCC box, leave the To: box empty, copy the form letter or write your own, type your name and info at the bottom and hit send. The process should only take about five minutes.

Kristine’s Email List (Health Care and Wellness Committee Representatives ):

Committee Representative list, to cut and paste all email addresses into the BCC box:

Caldier.Michelle@leg.wa.gov, Judy.Clibborn@leg.wa.gov, Eileen.Cody@leg.wa.gov, Richard.DeBolt@leg.wa.gov,
Paul.Harris@leg.wa.gov, Laurie.Jinkins@leg.wa.gov,
Norm.Johnson@leg.wa.gov, Jim.Moeller@leg.wa.gov, Marcus.Riccelli@leg.wa.gov, June.Robinson@leg.wa.gov, Jay.Rodne@leg.wa.gov, Joe.Schmick@leg.wa.gov,
Shelly.Short@leg.wa.gov, Steve.Tharinger@leg.wa.gov, Kevin.VanDeWege@leg.wa.gov

Kristine’s Example/Form Letter

Dear Representative,

Please support Lyme SB 5448 Recognizing Chronic Lyme disease and protecting the doctors who treat it. This is an extremely important bill and it’s crucial that it be passed. I have been dealing with this disease for years. I did not get properly diagnosed early on and I’m now struggling with debilitating chronic Lyme disease and am extremely ill. I am on disability, very few doctors will treat me, and insurance won’t cover the astronomical medical costs I’m incurring. I implore you to do everything in your power to support and pass this very important bill.

Thank you,

Your name

Additional Example Letters

My Anticipated Letter (As Example)

Dear Senator,

Please support Lyme Bill SB 5448 Recognizing Chronic Lyme disease.  I am a former Washington resident with numerous family members still residing in Washington.  I am a professional federal biologist who contracted Lyme disease through a tick bite in the course of my fieldwork in Montana in 2010. Despite several acute symptoms and the onset of Bell’s palsy within weeks of the tick bite, I was misdiagnosed for three years. This delay in treatment meant that several months of antibiotics, combined with other therapies, were needed to begin meaningful recovery.

Current testing and diagnostic shortcomings are missing hundreds of thousands of cases of Lyme Disease in the United States annually.  Diagnosis and treatment are further complicated by poorly understood and/or poorly acknowledged factors, such as the presence of coinfections (parasites, Bartonella, Babesia, to name but a few).  Doctors need the education and procedural freedom to properly diagnose and treat patients, understanding that length of infection and a multitude of additional factors increases the complexity of the illness and the duration and complexity effective treatment (which requires more therapeutic options than antibiotics).  Short course antibiotics are not adequate for persistent, Chronic or long-term infection and do not address coinfections, nor other factors critical for recovery.

You can help current and future patients regain their health more effectively, with lesser costs to families and communities, by supporting this legislation.  My extended family still resides in Washington as do dozens of other friends and loved ones, almost all of whom recreate in the outdoors avidly. Please consider this information for residents and patients. Recovery should not be impeded by arbitrary limitations.

Thank you,

Angela Daenzer

Highly Generic Letter (Suited to Friends/Family/Anyone)

Please support Lyme Bill SB 5448 Recognizing Chronic Lyme Disease.  [Optional:] I have seen first-hand the difficulties in diagnosing and treating this illness through the experiences of my [friend/loved] and the hardship an unnecessary suffering caused by the lack of access to adequate care.

Misdiagnosis and inadequate treatment options currently lead to delayed and inadequate care and, in many cases, permanent damage, disability, or even death.  Many aspects of treatment are poorly understood or poorly acknowledged by most physicians, and permitted treatment options under current guidelines are dangerously limited, as are medical practitioners with specific knowledge and experience in the treatment of Lyme Disease and the many complicating factors and coinfections that accompany it.  Those practitioners with specific knowledge and experience need to be allowed to treat their patients using effective and adaptive tools of appropriate duration.

Please do all you can to support this legislation and to provide for the needs of Chronic Lyme Disease Patients.

Thank You,

[Name]

Bill & Testimony Summaries

From Substitute Bill Report, March 3 (Current)

Summary of Substitute Bill: The Medical Quality Assurance Commission (MQAC) must do a study of the effects of long-term antibiotic therapy on patients who have been diagnosed with posttreatment Lyme disease syndrome. The study must include a review ofthe following: Ÿ Ÿ Ÿ Ÿ Ÿ

• the antibiotics that are commonly involved in long-term treatment of Lyme disease;
• the side effects associated with long-term antibiotic therapy;
• the effectiveness of long-term antibiotic therapy of controlling symptoms;
• whether allowing the practice of long-term antibiotic therapy would be beneficial to the health and safety of Washington residents;
• and any other aspects deemed important for the health and safety of patients who may receive these treatments.

From First-Reading Bill Report, Feb. 2 (Previous)

Physicians, osteopathic physicians, advanced registered nurse practitioners, physicians assistants, and osteopathic physician assistants may prescribe, administer, or dispense long-term antibiotic therapy to a patient who has been diagnosed with Lyme disease. The long-term antibiotic therapy must be for a therapeutic purpose that eliminates or controls the patient’s infection and symptoms. A provider may not be subject to professional disciplinary action solely based upon the provider prescribing, administering, or dispensing long-term antibiotic therapy to a patient who has been diagnosed with Lyme disease.

Staff Summary of Public Testimony on Original Bill (from Mar. 3 Report, linked below)

PRO: There are many misdiagnoses and mistreatments of Lyme disease, especially in Washington State. Lyme disease must be treated for 22 consecutive days and typical antibiotics cannot cure Lyme disease. The symptoms of Lyme disease are preventable if treated properly from the onset. Treatment can help patients return to normal lives. It is difficult to find physicians who treat Lyme disease in Washington. Some military service members who contract the disease go overseas to countries like Germany, where long-term antibiotic treatments are available. Seven other states have authorized the type of long-term treatment in this bill. Contrary to popular belief, ticks in Washington do carry Lyme disease.

OTHER: Evidence-based science has not yet determined the best long-term treatment option for those with chronic Lyme disease. There are also a lot of complications associated with long-term antibiotic treatments. Evidence-based treatments should remain the standard in Washington State. There should be a review of how to improve early diagnosis of Lyme disease in Washington, including more education for providers.

Persons Testifying: PRO: Dan Boeholt, Bill McClelland, Kevin McClelland, Tatsuko Go Hollo, Brianna Cooper, Celena Adler, citizens. OTHER: Charissa Fotinos, Health Care Authority. Signed In, Unable to Testify & Submitted Written Testimony: PRO: Faith Ramirez, Seattle WA Lyme Disease Group.

Relevant Links So Far:

• Washington Residents, to comment

• Bill Information

• Full Text of Bill (at first reading)

• Bill Report Feb. 2, 2015 (first reading)

• Substitute Bill Reprt Mar. 3 (as passed senate):

• Social Media Updates–Facebook page: Ticked Off On Lyme WA

Previous WA Chronic Lyme Bill posts here (include past requests, past background, etc.):

• Washington Proposed S.B. 5448 Would Allow Long Term Antibiotic Treatment For Lyme Disease (Please see draft proposed legislation and/or summary)
• Please Email Senators by Feb 20 ~  WA Proposed Lyme Bill S.B. 5448 Updates ~ Action Needed! (Background only, these letters not longer needed)
• It’s Not Too Late: Contact 49 Senators NOW to Pass Chronic Lyme Bill SB 5448 in WA (Background only, these letters not longer needed)