Bloody Lymey

A Blog About Living with Lyme Disease

ACTION!!! From the Massachusetts Lyme Legislative Task Force, July 12, 2016

Email from Lyme Alliance of the Berkshires:

From the Massachusetts Lyme Legislative Task Force, July 12, 2016:

When the Massachusetts House and Senate sent a Lyme disease insurance mandate to the governor as a budget amendment, it was intended to ensure insurance coverage for Lyme disease treatment beyond 30 days, when prescribed by a licensed physician.

But Governor Baker rewrote that amendment, severely limiting insurance coverage to only those treatments prescribed by infectious disease specialists, rheumatologists, and neurologists. These specialists tend to adhere to the rigid, overly restrictive treatment guidelines established by the infectious Diseases Society of America.  The IDSA guidelines are one of the reasons this mandate was needed in the first place.

Baker’s plan would deny coverage for licensed physicians in family practice, pediatrics, internal medicine and other practice areas, who tend to oversee Lyme disease treatment in the community.  It also would trigger referrals to more expensive specialists and further delay treatment.

In a nutshell, Baker’s recommendations would reinforce the original problem of restricted insurance coverage, not eliminate it.

Fortunately, Governor Baker’s recommendations are NOT binding!  Our state legislators are not done fighting for us. However, they will need the following help from each and every one of us:

The single most important thing you can do right away is to contact your own state legislators and urge them to do the following:

1) Please reject the governor’s damaging recommendations for mandated treatment coverage in the FY’17 Budget!

And:

2) Please restore the language released by the Conference Committee and previously adopted by both the House and the Senate! This is the best language for mandated treatment coverage for Lyme disease.

Contacting your legislators is easy to do with the Voter Voice system. Follow the link it only takes a minute! This bill and the Governor’s changes don’t just effect chronic Lyme patients, it effects all patients, those with acute Lyme and those who will get it in the future. The Governor’s move here also could set a dangerous precedent of government setting limits on what types of doctors could be seen for certain ailments, effectively eliminating patient choice!
We also encourage you to leave a comment on this article, letting your voice be heard about your what Governor Baker has done by altering a open-minded bill into an attack on Lyme patients. Share with everyone you know!
http://m.telegram.com/news/20160712/mass-governor-narrows-mandate-on-lyme-disease-treatment
Thank you for your time,
Lyme Alliance of the Berkshires
http://www.berkshirelyme.blogspot.com
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Lyme Legislation – Massachusetts

Good Day, Friends!  I received this email from my friends at The Lyme Alliance of the Berkshires today and it is pretty important!  Be sure to take action!
A long in the works amendment to the 2017 fiscal year state budget that would mandate that insurance companies in MA cover treatment for Lyme disease for as long a licensed physician saw fit is almost official! The Lyme Alliance of the Berkshires supports this bill as it would allow patients access to care that is currently not widely available and would create an atmosphere that wasn’t overwhelmed by fear. With such a amendment local doctors would face far less opposition if they chose to treat patients with Lyme disease as they saw fit. The Lyme Alliance of the Berkshires testified at Beacon Hill last October in support of this bill.
At this time, the Governor’s signature is required to pass it into law. There has been opposition to this legislation by the Mass Medical Society– legislation which would require insurers to cover long-term antibiotic therapy for a patient with Lyme disease. Let’s ensure the Governor knows you Massachusetts residents are aware of the hardships faced by patients in Mass who develop Lyme and that you want him to sign this legislation into law. See the message from Mass Legislative Task Force below for actions to take.
_____________________________________________________________________________________
FOR DISTRIBUTION TO MASSACHUSETTS RESIDENTS:
Dear Friends,
It’s time to contact the Governor’s office and encourage him to sign this legislation into law!
At this point, it’s sheer numbers that matter, not lengthy explanations, and every one of you can help. If you or your family member was hurt by inadequate antibiotic treatment and/or by a lack of insurance coverage, you may want to include a brief statement about that. Please don’t dwell on the high cost of treatment. Instead, emphasize how important it is to keep people healthy and functioning, as well as free from painful suffering.
Call and/or email today! Ask your family, friends and neighbors in Massachusetts to do the same. The Massachusetts State House will reopen Tuesday morning, and Governor Baker could decide to sign or veto the Lyme amendment at any point. We need to impress him with overwhelming support from his constituents!
______________________________________________________________________________________________________________________________________________________________________________________________________
Three different ways you can take action, pick one and DO IT NOW:
1. Call the Governor’s office 617-725-4005
Tell him that you want him to sign the budget with the Lyme amendment intact
2. Use the form on the Governor Baker’s website to email this message to him http://www.mass.gov/governor/constituent-services/contact-governor-office/  (be sure to scroll down to the bottom to find the form):
3. Fax your message: 617-727-9725
__________________________________________________________________________________________________________________________________________________________________________________________________________
Background information
We want to provide you with some additional information which we hope will increase your comfort level and encourage you to do this right away:
1. Over this past weekend, we’ve been actively conferring with the ILADS board. After reviewing the legislation and connecting them with the attorney who shepherded the Rhode Island bill into law (and who now lives in Massachusetts), ILADS has agreed to write a letter, urging Baker to support the Lyme amendment. This will be delivered to the governor’s office by Tuesday morning.
It is especially important to have ILADS as a medical society endorse the amendment, given the opposition expressed by the Massachusetts Medical Society. http://www.lymediseaseassociation.org/news/1505-ma-lyme-leg-task-force-reply-to-mms-bill-opposition
2. Similarly, after conferring with the attorney and studying the language, the Lyme Disease Association (LDA) is on board, and will fax its letter of support to Governor Baker no later than Tuesday morning. As a major patient advocacy group, the endorsement of the LDA is significant.
3. We also will be providing a letter from the attorney referenced above, describing Rhode Island’s comparable legislation and its striking success over the past decade. There has been no negative impact in the Rhode Island economy in the decade since its passage, and not a single health insurer opposed it at the end of its sunset period.
4. We plan to hand-deliver a packet of information to Governor Baker’s office (in a “Lyme” green folder, of course), Bright and early on Tuesday morning. We had promised his legislative aide that we would provide this material as a follow up to our meeting there last Thursday.
5. Please note that the State House reporter was incorrect when he wrote that the Conference Committee dropped the prohibition against characterizing antibiotic treatment as experimental. That’s not what they did, and that hasn’t been our concern. In fact, they broadened the language to say that even experimental medications can be used off-label as antibiotics, as long as they are FDA approved. We were told that this was done in order to make the current language comparable to the language used for cancer treatment. This could cause confusion, which is why we preferred the simpler, straightforward language in the original bills and in the House amendment.
4. Other questions have pertained to the repetition of the same language in several sections, and to a few restrictions which pertain to a small number of health plans with unusual coverage, like rebates. Representative Linsky’s office asked us to hold off on endorsing the amendment until they could check into the reasons for that language, and to examine it for potential loopholes. They’ve since given us a green light.
5. We’ve been gladly addressing questions and concerns from various other stakeholders all weekend. That way, we will be less vulnerable to having our actions second-guessed later. This did happen after the physician protection bill was passed in 2010, when one disgruntled advocate called for its repeal.
Now we’re ready to hit the ground running as this holiday weekend comes to a close. Let’s act as a truly united front! Thanks for your patience, your thoughtful consideration and above all your support. Don’t forget: we need tons of phone calls and emails to Governor Baker right away!
Happy 4th.
The Massachusetts Lyme Legislative Task Force
Helen Brown – Whitman
Donna Castle – Ayer
Janice Dey – Westport
Susan Fairbank-Pitzer – Danvers
Sharon Hawkes, MLIS – Nahant
Jayme Kulesz – Groton
Robin LeMieux – Lowell
Sheila Statlender, Ph.D. – Framingham
Share with everyone you know! Anyone who has ever known someone with Lyme disease has a stake in this fight! Anyone who lives in a Lyme endemic area (all of MA) has the right to tell Governor Baker that he must support this amendment!
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Help! Federal Lyme Bill Stuck in Committee

Lyme Disease.Org Logo
Federal Lyme bill stuck in committee. 
Help us “unstick” it!
capitol dome

The federal Lyme bill – S. 1503 – sponsored by Senator Blumenthal, is stuck in the Senate Health, Education, Labor, and Pensions (HELP) Committee, with only a few days left to “unstick” it.

At this point, our best shot is to get the provisions of this bill put into a bigger health bill the Senate is working on, by adding our language as an amendment.

The key person for making that happen is the committee chair, Sen. Lamar Alexander, of Tennessee.
We’re asking you to phone your OWN senators, requesting them to ask Sen. Alexander to add our language as an amendment to this bill.

LymeDisease.org, publisher of The Lyme Times, is the Lyme community’s leading source of news, information, and health policy analysis. 
Federal Lyme bill stuck in committee. 
Help us “unstick” it!
capitol dome

The federal Lyme bill – S. 1503 – sponsored by Senator Blumenthal, is stuck in the Senate Health, Education, Labor, and Pensions (HELP) Committee, with only a few days left to “unstick” it.

At this point, our best shot is to get the provisions of this bill put into a bigger health bill the Senate is working on, by adding our language as an amendment.

The key person for making that happen is the committee chair, Sen. Lamar Alexander, of Tennessee.
We’re asking you to phone your OWN senators, requesting them to ask Sen. Alexander to add our language as an amendment to this bill.

LymeDisease.org, publisher of The Lyme Times, is the Lyme community’s leading source of news, information, and health policy analysis. 
Leave a comment »

More Lyme Legislature! Massachusetts House Ways and Means Committee

Dear Friends,

Thanks to your help, the Massachusetts Bill H.4259, An Act Relative to Lyme Disease Treatment Coverage, that would require insurance companies to pay for long-term antibiotic treatment of Lyme disease was referred earlier this week to the MA House Ways and Means Committee! We have had good information that this bill will be considered by the Committee this Thursday, July 17, and that it can still get through and be voted on before this session ends, if we keep the interest high.
 
Do you think that the decision for treatment should NOT be up to your insurance company, and instead be left to you and your physician?


THEN YOUR VOICE NEEDS TO BE HEARD!

 

 
There are very few  weekdays left in this legislative session. We need to push this bill forward! Please CALL, WRITE, E-MAIL or VISIT your representative. Many MA Lyme advocates are also contacting the members the House Ways and Means Committee.
If you are from Southern Berkshire County, Representative Smitty Pignatelli from Lenox, represents you, has co-sponsored H.4259, and sits on the MA House Ways and Means Committee.
 
Find your MA legislators’ contact info at: https://malegislature.gov/people/search
Please reach out to family, friends, and neighbors and ask that they also CALL, WRITE, E-MAIL or VISIT! This legislation, if passed, would let people focus on the fight for their lives and not the fight with their insurance companies.
You are making a difference in the future of Lyme disease treatment. 
 
Thank you!

Karla

 
 
TALKING POINTS
 
1) Where in Massachusetts you are from. They most want to hear from people in their district.
 
2) I vote, and I am in favor of the Lyme Disease Patient Protection Bill, H.4259,

with the edits of the Mass Lyme Disease Legislative Task Force. Please vote in favor of this bill.

3) Why H.4259 is important to you (e.g., I can get the treatment that I need so I can get back to work)

4) Remind your rep that the financial impact study of this bill predicted LITTLE TO NO INCREASE in insurance premiums for the general public.

5) This specific legislation was recommended by the Governor’s Special Commission to Conduct an Investigation and Study of the Incidence and Impacts of Lyme Disease in 2013.

 
 
Sample E-mail 
 
(Please add your own personal note about how Lyme disease has effected you and your loved ones to the beginning of this message)
 
(Just Copy, Paste, and Insert the Rep’s name & your name)
 
Subject: Support H.4259, An Act Relative to Lyme Disease Treatment Coverage & the MA Lyme Legislative Task Force’s Edits
 
Dear <Insert Rep on House Ways and Means>,
 
As one of the thousands of Massachusetts citizens affected by the burgeoning epidemic of Lyme disease, I support the intent of H.4259, An Act Relative to Lyme Disease Treatment Coverage which is currently before your committee. I respectfully request your assistance with H. 4259, as the current wording contains various loopholes that insurance companies could use to deny care to people with Lyme disease.
 
As the intent of the bill is to protect patients’ access to care, it is my hope that you may be able to assist us with implementing the Massachusetts Lyme Legislative Task Force’s essential edits to H. 4259, which serve to tighten up the legal wording.  Without these essential edits, the bill may harm people like me, the very people it is supposed to protect; I need your help. 
 
H. 4259 builds on the Massachusetts Physician Protection Act.  It also fulfills the Massachusetts Special Commission to Conduct an Investigation and Study of the Incidence and Impact of Lyme Disease recommendation for “mandatory Lyme disease insurance coverage to be enacted in Massachusetts.” Importantly, the recent Center for Health and Information Analysis (CHIA) report found that there would be little to no ($0.0) impact on the cost of insurance.
 
Please implement the suggested edits from the Massachusetts Lyme Legislative Task Force and vote favorably on H.4259.  Thank you for your time and consideration. 
 
Respectfully,
 
<insert your NAME and ADDRESS here>
 


Sample Facebook post or e-mail to family/friends:
 
I support H.4259 and the MA Lyme Legislative Task Force Edits. Do you? If
yes, then call 617-722-2990 and let Brian Dempsey, the House Chair of Ways
and Means know!
 
This note could be used when you share the following link to a recently published article, which talks about why this bill is so important. “Massachusetts face to face with Lyme disease patient protection bill:” http://worcestermag.com/2014/07/10/massachusetts-face-face-lyme-disease-patient-protection-bill/25114
 
 
MA House Ways & Means Committee Members
 
<https://malegislature.gov/Committees/House/H34>
If you are from Southern Berkshire County, Representative Smitty Pignatelli from Lenox, represents you, has co-sponsored H.4259, and sits on the MA House Ways and Means Committee.
 
Brian Dempsey, House Chair 617-722-2990
Brian.Dempsey@mahouse.gov
 
Stephen Kulik, House Vice Chair 617-722-2380
Stephen.Kulik@mahouse.gov
 
Matthew Beaton 617-722-2488
Matthew.Beaton@mahouse.gov
 
Michael Brady 617-722-2230
Michael.Brady@mahouse.gov
 
Linda Campbell 617-722-2305
Linda.Campbell@mahouse.gov
 
Christine Canavan 617-722-2575
Christine.Canavan@mahouse.gov
 
Nick Collins 617-722-2080
Nick.Collins@mahouse.gov
 
Viriato deMacedo 617-722-2100
Vinny.deMacedo@mahouse.gov
 
Angelo D’Emilia 617-722-2488
Angelo.D’Emilia@mahouse.gov
 
Geoff Diehl 617-722-2810
Geoff.Diehl@mahouse.gov
 
Carolyn Dykema 617-722-2210
Carolyn.Dykema@mahouse.gov
 
Lori Ehrlich 617-722-2014
Lori.Ehrlich@mahouse.gov
 
Robert Fennell (co-sponsor) 617-722-2575
Robert.Fennell@mahouse.gov
 
Gloria Fox 617-722-2810
Gloria.Fox@mahouse.gov
 
Sean Garballey (co-sponsor) 617-722-2090
Sean.Garballey@mahouse.gov
 
Robert Koczera 617-722-2582
Robert.Koczera@mahouse.gov
 
Timothy Madden (co-sponsor) 617-722-2810
Timothy.Madden@mahouse.gov
 
Paul McMurtry 617-722-2015
Paul.McMurtry@mahouse.gov
 
Kevin Murphy no # listed.
Kevin.Murphy@mahouse.gov
 
Rhonda Nyman 617-722-2210
Rhonda.Nyman@mahouse.gov
 
Thomas Petrolati 617-722-2255
Thomas.Petrolati@mahouse.gov
 
Smitty Pignatelli (co-sponsor) 617-722-2017
Smitty.Pignatelli@mahouse.gov
 
Angelo Scaccia 617-722-2060
Angelo.Scaccia@mahouse.gov
 
Thomas Stanley (co-sponsor) 617-722-2230
Thomas.Stanley@mahouse.gov
 
Walter Timilty 617-722-2230
Walter.Timilty@mahouse.gov
 
Cleon Turner 617-722-2090
Cleon.Turner@mahouse.gov
 
David Vieira 617-722-2230
David.Vieira@mahouse.gov
 
Donald Wong 617-722-2488
Donald.Wong@mahouse.gov
 
House Ways and Means Committee Members email list
 
It is better to send a separate individually addressed email to each Committee member, but if that is too hard for you the entire list is below:
 
Brian.Dempsey@mahouse.govStephen.Kulik@mahouse.gov,Angelo.Scaccia@mahouse.govThomas.Petrolati@mahouse.govChristine.Canavan@mahouse.govKevin.Murphy@mahouse.govThomas.Stanley@mahouse.govCleon.Turner@mahouse.govPaul.McMurtry@mahouse.govSean.Garballey@mahouse.govCarolyn.Dykema@mahouse.govNick.Collins@mahouse.govVinny.deMacedo@mahouse.govMatthew.Beaton@mahouse.govDavid.Vieira@mahouse.gov,Gloria.Fox@mahouse.govRobert.Koczera@mahouse.govRobert.Fennell@mahouse.govWalter.Timilty@mahouse.govSmitty.Pignatelli@mahouse.govLinda.Campbell@mahouse.govLori.Ehrlich@mahouse.govMichael.Brady@mahouse.govTimothy.Madden@mahouse.govRhonda.Nyman@mahouse.govAngelo.D’Emilia@mahouse.govGeoff.Diehl@mahouse.govDonald.Wong@mahouse.gov
Yes, Smitty is a member of the House Ways and Means Committee. He is also a co-sponsor of this bill, and has been helpful with information and advice. He is one of the good guys on this bill! Yes, contact him, and be sure to THANK HIM.

We are asking right now that only constituents contact their reps on House Ways and Means. If Smitty is not your rep, please hold off on contacting right now. In a couple of days, we will have additional alerts, to make sure that no stone is unturned in getting support for this bill.

Thanks!

Sharon

MA Lyme Legislative Task Force

________________________________

Subject: MA LYME BILL ACTION ALERT!

Brian.Dempsey@mahouse.gov<mailto:Brian.Dempsey@mahouse.gov>

Stephen Kulik, House Vice Chair 617-722-2380

Stephen.Kulik@mahouse.gov<mailto:Stephen.Kulik@mahouse.gov>

Matthew Beaton 617-722-2488
Matthew.Beaton@mahouse.gov<mailto:Matthew.Beaton@mahouse.gov>

Michael Brady 617-722-2230
Michael.Brady@mahouse.gov<mailto:Michael.Brady@mahouse.gov>

Linda Campbell 617-722-2305
Linda.Campbell@mahouse.gov<mailto:Linda.Campbell@mahouse.gov>

Christine Canavan 617-722-2575
Christine.Canavan@mahouse.gov<mailto:Christine.Canavan@mahouse.gov>

Nick Collins 617-722-2080
Nick.Collins@mahouse.gov<mailto:Nick.Collins@mahouse.gov>

Viriato deMacedo 617-722-2100
Vinny.deMacedo@mahouse.gov<mailto:Vinny.deMacedo@mahouse.gov>

Angelo D’Emilia 617-722-2488
Angelo.D’Emilia@mahouse.gov<mailto:Angelo.D’Emilia@mahouse.gov>

Geoff Diehl 617-722-2810
Geoff.Diehl@mahouse.gov<mailto:Geoff.Diehl@mahouse.gov>

Carolyn Dykema 617-722-2210
Carolyn.Dykema@mahouse.gov<mailto:Carolyn.Dykema@mahouse.gov>

Lori Ehrlich 617-722-2014
Lori.Ehrlich@mahouse.gov<mailto:Lori.Ehrlich@mahouse.gov>

Robert Fennell (co-sponsor) 617-722-2575
Robert.Fennell@mahouse.gov<mailto:Robert.Fennell@mahouse.gov>

Gloria Fox 617-722-2810
Gloria.Fox@mahouse.gov<mailto:Gloria.Fox@mahouse.gov>

Sean Garballey (co-sponsor) 617-722-2090
Sean.Garballey@mahouse.gov<mailto:Sean.Garballey@mahouse.gov>

Robert Koczera 617-722-2582
Robert.Koczera@mahouse.gov<mailto:Robert.Koczera@mahouse.gov>

Timothy Madden (co-sponsor) 617-722-2810
Timothy.Madden@mahouse.gov<mailto:Timothy.Madden@mahouse.gov>

Paul McMurtry 617-722-2015
Paul.McMurtry@mahouse.gov<mailto:Paul.McMurtry@mahouse.gov>

Kevin Murphy no # listed.

Kevin.Murphy@mahouse.gov<mailto:Kevin.Murphy@mahouse.gov>

Rhonda Nyman 617-722-2210
Rhonda.Nyman@mahouse.gov<mailto:Rhonda.Nyman@mahouse.gov>

Thomas Petrolati 617-722-2255
Thomas.Petrolati@mahouse.gov<mailto:Thomas.Petrolati@mahouse.gov>

Smitty Pignatelli (co-sponsor) 617-722-2017
Smitty.Pignatelli@mahouse.gov<mailto:Smitty.Pignatelli@mahouse.gov>

Angelo Scaccia 617-722-2060
Angelo.Scaccia@mahouse.gov<mailto:Angelo.Scaccia@mahouse.gov>

Thomas Stanley (co-sponsor) 617-722-2230
Thomas.Stanley@mahouse.gov<mailto:Thomas.Stanley@mahouse.gov>

Walter Timilty 617-722-2230
Walter.Timilty@mahouse.gov<mailto:Walter.Timilty@mahouse.gov>

Cleon Turner 617-722-2090
Cleon.Turner@mahouse.gov<mailto:Cleon.Turner@mahouse.gov>

David Vieira 617-722-2230
David.Vieira@mahouse.gov<mailto:David.Vieira@mahouse.gov>

Donald Wong 617-722-2488
Donald.Wong@mahouse.gov<mailto:Donald.Wong@mahouse.gov>

House Ways and Means Committee Members email list

It is better to send a separate individually addressed email to each Committee member, but if that is too hard for you the entire list is below:

Brian.Dempsey@mahouse.gov<mailto:Brian.Dempsey@mahouse.gov>, Stephen.Kulik@mahouse.gov<mailto:Stephen.Kulik@mahouse.gov>, Angelo.Scaccia@mahouse.gov<mailto:Angelo.Scaccia@mahouse.gov>,Thomas.Petrolati@mahouse.gov<mailto:Thomas.Petrolati@mahouse.gov>, Christine.Canavan@mahouse.gov<mailto:Christine.Canavan@mahouse.gov>, Kevin.Murphy@mahouse.gov<mailto:Kevin.Murphy@mahouse.gov>,Thomas.Stanley@mahouse.gov<mailto:Thomas.Stanley@mahouse.gov>, Cleon.Turner@mahouse.gov<mailto:Cleon.Turner@mahouse.gov>, Paul.McMurtry@mahouse.gov<mailto:Paul.McMurtry@mahouse.gov>,Sean.Garballey@mahouse.gov<mailto:Sean.Garballey@mahouse.gov>, Carolyn.Dykema@mahouse.gov<mailto:Carolyn.Dykema@mahouse.gov>, Nick.Collins@mahouse.gov<mailto:Nick.Collins@mahouse.gov>,Vinny.deMacedo@mahouse.gov<mailto:Vinny.deMacedo@mahouse.gov>, Matthew.Beaton@mahouse.gov<mailto:Matthew.Beaton@mahouse.gov>, David.Vieira@mahouse.gov<mailto:David.Vieira@mahouse.gov>,Gloria.Fox@mahouse.gov<mailto:Gloria.Fox@mahouse.gov>, Robert.Koczera@mahouse.gov<mailto:Robert.Koczera@mahouse.gov>, Robert.Fennell@mahouse.gov<mailto:Robert.Fennell@mahouse.gov>,Walter.Timilty@mahouse.gov<mailto:Walter.Timilty@mahouse.gov>, Smitty.Pignatelli@mahouse.gov<mailto:Smitty.Pignatelli@mahouse.gov>, Linda.Campbell@mahouse.gov<mailto:Linda.Campbell@mahouse.gov>,Lori.Ehrlich@mahouse.gov<mailto:Lori.Ehrlich@mahouse.gov>, Michael.Brady@mahouse.gov<mailto:Michael.Brady@mahouse.gov>, Timothy.Madden@mahouse.gov<mailto:Timothy.Madden@mahouse.gov>,Rhonda.Nyman@mahouse.gov<mailto:Rhonda.Nyman@mahouse.gov>, Angelo.D’Emilia@mahouse.gov<mailto:Angelo.D’Emilia@mahouse.gov>, Geoff.Diehl@mahouse.gov<mailto:Geoff.Diehl@mahouse.gov>,Donald.Wong@mahouse.gov<mailto:Donald.Wong@mahouse.gov>

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Lyme Bill Blitz: NY & MA 2014

Dear Friends,

The following messages contain information on how you can help bring two very important bills into law. Both bills, one in MA and one in NY, protect treatment options for Lyme patients. The Massachusetts bill will require insurance companies to pay for long-term treatment for Lyme disease. The New York bill will help to protect our LLMDs from unwarranted investigation by the NYS Office of Professional MisConduct.
Together we can make a difference!
Karla
**THE LYME BILL BLITZ**

Huge Victory

& A NEW CALL TO ACTION!

Massachusetts Bill H.4142

The Lyme Disease Patient Protection Bill Needs your Help!

Great News!!! H.4142 has been reported out of the Joint Committee of Healthcare Financing and is currently before the House of Representatives.

You made the difference. YOUR CALLS, E-MAILS, & VISITS have helped push H.4142 through the JCHCF committee and into the House!

We need YOU to continue to CALL, VISIT, and/or E-MAIL! Please contact your local State Representative and ask them to vote in favor of H.4142 including language changes recommended by the MA Lyme Legislative Task Force. 

To find your Representative go tohttps://malegislature.gov/People/FindMyLegislator PLEASE CALL NOW!!!

This is the Homestretch, this is the time when we are all needed. Representatives have told us that they need our Lyme community’s help. We need to keep the pressure on, so they have the political capital to get this passed!

Together we can make a difference!

Thank you,

The Massachusetts Lyme Legislative Task Force
Helen Brown – Whitman
Donna Castle – Groton
Janice Dey – Westport
Susan Fairbank-Pitzer – Danvers
Sharon Hawkes, MLIS – Lenox
Jayme Kulesz – Groton
Trish McCleary – Sturbridge
Sheila Statlender, Ph.D. – Framingham
Michelle Treseler – Newton

NEWS: Getting your Lyme message to Gov. Cuomo
26th June 2014

Share this link with your Facebook friends!

 http://lymedisease.org/news/lyme_disease_views/news-getting-your-lyme-message-to-gov-cuomo.html#sthash.JsNv8mJZ.dpuf

Special link for NY residents to ask Gov. Cuomo to sign Lyme doctor protection bill. Other contact options for those outside of New York.

NY State residents:

Even if you have already contacted or intend to contact Governor Cuomo via phone call or personal letter, we are requesting that all New York State residents use this link (in addition) to contact the Governor and urge him to sign S7854-A7558B. Please add a personal note concerning how Lyme disease has affected you or your friends, family, and neighbors to the beginning of the letter.

https://www.votervoice.net/NYSCOALITION/Campaigns/36501/Respond

Using the votervoice site helps the NYS Coalition for Lyme and Tick-borne Diseases to document how many requests Governor Cuomo has received from NYS residents.
.
People who don’t live in New York:


Non-NYS residents can use the contact information below to call or write Governor Cuomo and urge him to sign S7854-A7558B. The votervoice link will not work for non-NYS residents but it does contain a sample letter that users can copy and paste as part of their individual letters.
.
The Honorable Andrew M. Cuomo
Governor of New York State
NYS State Capitol Building
Albany, NY 12224
(518) 474-8390
.
http://www.governor.ny.gov/contact/GovernorContactForm.php
.
Bill S7854-A7558B – Prohibits the investigation of any claim of medical professional misconduct based solely on treatment that is not universally accepted by the medical profession:
.
http://open.nysenate.gov/legislation/bill/S7854-2013
.
In addition to this legislation, the NYS Senate’s Lyme Disease Task Force recently released its report. Read more here:
The Press Release and Report by the NYS Senate State Lyme Disease Task Force is astounding in its breath of important initiatives proposed for combating this scourge, including adopting “a resolution calling on the Centers for Disease Control to reevaluate its guidance on Lyme and other tick-borne diseases and for the National Institutes of Health, the Department of Defense, and other federal agencies to provide more funding for these diseases.”  I am posting links to both below.

Our work is just beginning to hold the NYS legislature to its commitment on these important initiatives, including addressing insurance denials and the need to update our physicians on important new research, such as evidence that supports persistence of infection and polymicrobial infection as reason that many patients remain ill after short-term treatment.

One particular interest of mine is the fact that many of the innovative new tests that are available to Lyme patients in all of the other 50 states are denied to NYS residents. As a result of this short-sighted policy, I had to go out-of-state to get many important tests that helped our physicians to properly diagnose and treat the multiple tick-borne illnesses affecting my family members. The Task Force Report recommends that “the Department of Health re-evaluate the tests and facilities it authorizes for Lyme and other Tick-Borne diseases in order to help facilitate earlier diagnoses, and better outcomes, across the State.”

New Task Force Report & Recommendations to Address Lyme and Tick-Borne Diseases
Posted by Majority Press on Wednesday, June 18th, 2014

http://www.nysenate.gov/press-release/senate-releases-task-force-report-recommendations-address-lyme-and-tick-borne-diseases

Report from the Senate Majority Coalition Task Force On Lyme and Tick-Borne Diseases          

http://www.nysenate.gov/files/pdfs/2014_LYME_task_force_report_0.pdf

– See more at: http://lymedisease.org/news/lyme_disease_views/news-getting-your-lyme-message-to-gov-cuomo.html#sthash.JsNv8mJZ.dpuf

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Massachusetts Bill H.989, A Patient Protection Bill Needs Your Help!

***CALL TO ACTION***CALL TO ACTION***CALL TO ACTION***

Massachusetts Bill H.989, A Patient Protection Bill Needs Your Help!

H.989, An Act Relative to Lyme Disease Treatment Coverage, a bill that will require insurance companies to cover physician-prescribed antibiotic treatment for Lyme disease, is currently in the Joint Committee on Financial Services. After the successful hearing in the fall, many representatives are now waiting for a report on how the law may impact the economy. We want them to push it forward regardless, because insurers who deny coverage for care are costing Massachusetts families and the Massachusetts economy. Don’t let some insurance companies push the costs onto Massachusetts residents, employers, and the economy.

Our representatives need to be reminded that H.989 is extremely important to us and that we are counting on them to support it.

WE NEED YOUR HELP, SO PLEASE CALL, WRITE, OR VISIT
YOUR STATE REPRESENTATIVE AND STATE SENATOR

Find your legislators’ contact info at https://malegislature.gov/people/search

TALKING POINTS

Where in Massachusetts you are from.

Why H.989 is important to you (e.g., I can get the treatment that I need so I can get back to work)

Remind your reps that Rhode Island passed a very similar bill in 2004 and the sky did not fall. People were able to receive their physician-prescribed care.

This specific legislation was recommended by the Governor’s Special Commission to Conduct an Investigation and Study of the Incidence and Impacts of Lyme Disease in October 2012.

If you want more talking points, and/or are visiting the representative’s office, then please find attached the packet for legislators.

Please note that it can also be found in the Files section of the MassachusettsLyme Yahoo! Group website at:

https://groups.yahoo.com/neo/groups/MassachusettsLyme/files

“I vote, and I am in favor of the Lyme Disease Patient Protection bill H.989. Are You?

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