From the Massachusetts Lyme Legislative Task Force:

In anticipation of Governor Baker's veto, we updated our previous advocacy document "Fiction versus Fact," and posted it for you below.

We sent it to every legislator at the State House Thursday morning, to encourage them to support an override:

"FICTION VERSUS FACT"

In view of Governor Baker's veto of this vital legislation, we want to clarify some misconceptions about H4491 and to remind you of the following factual information. We hope that this will be help to sort out truth from error in suppositions about the bill:

FICTION #1: Legislators should not pass this bill because they are not qualified to practice medicine.

FACT: This bill does NOT legislate treatment. On the contrary, it enables licensed physicians to make treatment decisions based upon their best clinical judgement, without interference from third-party insurers.

It simply bridges the gap between the physician’s prescription of long-term antibiotics (defined as anything greater than one month), already protected by state law, and the patient’s ability to pay for it through insurance. This approach incorporates both physician judgement as well as patients' values, consistent with the principles of evidence-based medicine.

FICTION #2: The Lyme disease treatment guidelines developed by the Infectious Diseases Society of America (IDSA) in 2006 are the gold standard. Their guidelines recommend only one month of antibiotics, and therefore their treatment advice should prevail. (3)

FACT: The IDSA guidelines for the treatment of Lyme disease are not even listed on the National Guideline Clearinghouse, because they are out of date and don't conform to the stringent standards for guideline development established by the Institute of Medicine (IOM). The only guidelines for the treatment of Lyme disease currently listed on the NGC website are the guidelines published by the International Lyme and Associated Diseases Society (ILADS), which would support extended treatment with antibiotics, when necessary. (4)

Only a tiny fraction of the IDSA membership claims expertise in the diagnosis and treatment of Lyme disease, and even fewer published the highly restrictive Lyme treatment guidelines that severely limit treatment options. Some IDSA members do not agree with these guidelines, including Dr. Sam Donta, professor emeritus of Boston University School of Medicine, published researcher and former member of the Massachusetts Lyme Commission, who has written to you and testified in support of this legislation.

The IDSA's Lyme disease treatment guidelines have been the subject of considerable criticism. They were the target of an investigation by former Connecticut Attorney General Richard Blumenthal, who found significant, undisclosed conflicts of interest among the authors. 5, 6, 7http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

The Institute of Medicine (IOM) has cited the IDSA guidelines as an example of the guidelines process gone awry, noting a lack of transparency in the guideline development process (8)

http://nationalacademies.org/…/Clinical-Prac…/Standards.aspx

Despite all of these problems, insurance companies rely on the IDSA guidelines in order to deny coverage for Lyme disease treatment.

FICTION #3: These treatments should not be covered by insurance because physicians must not be allowed to treat Lyme disease according to their clinical judgement.

FACT: The right to diagnose and treat Lyme disease according to the clinical judgement of the licensed physician has already been granted through legislation passed in MA in 2010 (9)

The opposition of the Massachusetts Medical Society is very surprising because, as a patient-centered approach which respects the physician’s expertise, H4491 supports the mission posted on its website:

"Our goals are to enhance and protect the physician-patient relationship and to preserve the physician's ability to make clinical decisions for the benefit of patients."

This approach also is supported by the evidence-based treatment guidelines published by The International Lyme and Associated Diseases Society (ILADS), a multidisciplinary, international medical society dedicated to better understanding and improved treatment for patients suffering from Lyme disease. As noted above, the ILADS guidelines are the only Lyme disease guidelines currently posted on the National Government Clearinghouse (NGC), indicating their legitimacy and approval from medical guidelines overseers.

H4491 fulfills the recommendation of the Massachusetts Lyme Commission, a multidisciplinary, governor-appointed panel of experts, which recommended mandatory insurance coverage in its 2013 report (10)

H4491 is based on nearly identical legislation which has been in place in Rhode Island since 2004, where the law was made permanent after a one-year sunset period. This was done without a single complaint from insurers, medical specialty groups or small business interests. We fully expect a similarly successful experience in Massachusetts.

FICTION #4: Only a handful of physicians treat patients with long-term antibiotics, a practice contrary to the best standards of care.

FACT: A recent CDC survey noted that 56% of Lyme patients received more than 28 days’ of antibiotics, indicating that many physicians agree that a one-month course is not sufficient for some patients (11) More recently published ILADS guidelines recommend allowing physicians to treat with antibiotics according to their clinical judgment. (4)

FICTION #5: Lyme disease is not a costly problem.

FACT: According to a study published in 1993 in Contingencies, an actuarial trade publication, the average cost of diagnosis, treatment and lost wages related to Lyme disease was $61,688 per year per patient, or$101,064 in 2014 dollars, well beyond the median household annual income in Massachusetts in 2014 of $69,160 (12)

Researchers at Johns Hopkins have found that patients with ongoing symptoms whose antibiotic treatment is suspended after one month go on to see numerous specialists, are prescribed palliative drugs, undergo expensive testing and more (13). With an estimated 240,000 to 440,000 new cases of the tick-borne illness diagnosed every year, the researchers found that Lyme disease costs the U.S. health care system between $712 million and $1.3 billion a year - or nearly $3,000 per patient on average - in return doctor visits and testing. These visits come after patients have finished their original course of antibiotics (see link below for more information)

ttps://www.sciencedaily.com/releases/2015/02/150205095049.htm

The cost of an additional course of antibiotics is dwarfed by comparison, and will save money for Massachusetts by promoting earlier diagnosis and effective treatment.

http://journals.plos.org/plosone/article…

FICTION #6: Legislators should not pass legislation which is disease specific.

FACT: There is a clear precedent for legislative intervention in specific diseases. Not long ago, breast cancer patients were denied the right to choose lumpectomy, a less invasive procedure, over radical mastectomy. In response to protests, several states passed protective legislation, allowing women to choose lumpectomies, and mandating insurance coverage for that procedure. Lumpectomies are now recognized to be the more appropriate and humane procedure for many women.

http://sd27.senate.ca.gov/…/2012-10-09-all-breast-cancer-pa…

FICTION #7: Long-term antibiotic therapy may be dangerous, even leading to potentially fatal infections in the bloodstream in the case of intravenous (IV) treatment.

FACT: Proper training and monitoring greatly reduces the risks associated with these treatments, and must be weighed against the very serious risks associated with partially treated, disseminated Lyme disease, or cases in which timely diagnosis and treatment have been delayed:

1) Long-term antibiotic treatment is used in a relatively small percentage of patients with Lyme disease, but has been described as safe (14).

2) IV is prescribed routinely in patients with other serious infectious diseases, such as tuberculosis, in which the full course of antibiotic treatment necessary to eradicate the infection includes up to two years of therapy

3) It is not unusual for adolescents to receive long-term regimens of oral antibiotics as treatment for the relatively more benign problem of acne, citing the risk of facial scarring and “long-lasting psychological harm” as the rationale for treating (15)

4) Cancer patients are not denied life-saving treatment because of a fear of potential side effects, nor should Lyme patients be denied.

FICTION #8: Long-term antibiotic treatment promotes antibiotic resistance in the community.

FACT: Antibiotic resistance is an important concern. However:

1) One study suggests that intravenous antibiotics for Lyme do not invite antibiotic resistance (16)

2) The routine, non-therapeutic use of antibiotics in livestock should be the first target in the effort to prevent resistance. The CDC, for example, has reported that antimicrobial use in food animals is a dominant source of antibiotic resistance. According to the Union of Concerned Scientists, 70% of antibiotic and related drug usage in the United States is for agricultural purposes (17)

3) The concern over possible resistance must be weighed against the huge risk to society of an emerging population saddled with chronic symptoms.

FICTION #9: There is no convincing data to support the claim that Lyme disease can persist in humans beyond 30 days of antibiotic treatment.

FACT: The IDSA has ignored credible evidence gleaned from more than 21,000 peer-reviewed scientific articles that Lyme does in fact persist.

In 2012, for example, one such article described the persistence of the Lyme bacterium in primates after having been treated with antibiotics (18)

More recently, researcher Kim Lewis, Ph.D., of Northeastern University, has reported on viable Lyme persister cells which survive and thrive in the laboratory after antibiotic treatment (19, 20)

Linden Hu, M.D., of Tufts University/New England Medical Center, presented a recent xenodiagnoses study, which found evidence of infection in humans previously treated with antibiotics. (21)

The highly respected David Volkman, Ph.D., M.D., Emeritus Professor of Medicine and Pediatrics, SUNY, Stony Brook, NY, a former Senior Investigator at the National Institute of Allergy and Infectious Diseases (NAIAD), a component of the National Institute of Health (NIH), and previous Chairman of both the Internal and External Review Boards of the NIAID, testified at a July, 2009 IDSA guidelines hearing that the IDSA guidelines should be changed, and said that:

“In the face of both animal and human evidence of persistent borreliosis following inadequately treated LD, it is disappointing that Guidelines members continue to dismiss the possibility of persistent borreliosis with unreferenced assertions that it has been “discredited” by “current thinking.” Since mouse models of persistent borrelia infection exist it should be straightforward to design an antibiotic regimen that eliminates this infection. However instead of urging the development of better diagnostic tools to identify individuals with previous infections who may still be infected with chronic symptoms, Guidelines members merely assert the unsupported dogma that chronically infected people are all seropositive. This claim is simply untrue. Some of these committee members have testified as “expert witnesses” for insurance companies attempting to deny health benefits to chronically symptomatic individuals and written articles disputing its existence.”(22)

FICTION #10: This bill will increase everyone’s insurance premiums.

FACT: A Center for Health Information and Analysis (CHIA) report in 2014 estimated the possible increased cost of insurance to be zero to eleven cents per year (23)

FICTION #11: There is no evidence that extended antibiotic treatment (defined as anything beyond the one month allowed in the IDSA guidelines) is effective.

FACT: A critical analysis of at least one retreatment study which failed to find improvement determined that its results were not valid due to flaws in the study design, which lacked statistical power (24)

In his recent presentation at the 2016 Lyme conference at Massachusetts General Hospital, Dr. Brian Fallon of Columbia University also cited retreatment studies, including his own NIH-sponsored research, in which patients showed improvement (25, 26)

In her recent testimony at the recent public hearing in Bolton, MA, Dr. Nevena Zebcevek, Co-Director of the Dean Center for Tick Borne Illness, Spaulding Rehabilitation Hospital, cited three antibiotic retreatment studies in which patients demonstrated improved cognition and fatigue (27)

FICTION #12: Extended antibiotic treatment is particularly dangerous and entails unnecessary risk for children.

FACT: According to the CDC, Children are in the age group most heavily affected by Lyme (28)

Published reports document its negative impact on cognitive functioning and academic progress, as well as health-related symptoms (29, 30, 31, 32)

Some of these children are misdiagnosed with primary psychiatric disorders and placed on powerful medications not even validated for the pediatric population (33). Where is the outcry against that practice?

These children lose years of normal childhood, and many continue to struggle with impaired health as young adults. The resulting emotional and physical trauma experienced by these young patients and their families is enormous and must be remedied.

FICTION #13: The bill’s provision concerning insurance coverage for off-label use of drugs (different than long-term use of antibiotics) is unprecedented and is a reason to vote against a veto override.

FACT: That provision is actually similar to pre-existing Massachusetts law requiring coverage of off-label drugs for the treatment of cancer if such a drug is approved by the FDA for any indication. So the notion that the provision in our bill sets precedent is simply false. Moreover, like in the cancer coverage law, even off-label use of a drug must be supported in medical literature as a recognized standard of care. This provision does not protect physicians using an off-label drugs from meeting a recognized standard of care for the treatment of Lyme disease. Until and unless it does so, a treating physician would not be authorized to prescribe such drug, let alone force an insurer pay for it.

CONCLUSION

Passage of H4491 would send a message that Massachusetts respects and protects the physician-patient relationship, along with the right of the physician to prescribe treatment which is responsible, thoughtful and best for the individual patient. We urge you to override Governor Baker's veto of this vital bill.

REFERENCES

1. Shadick NA, Phillips CB, Logigian EL, Steere AC, Kaplan RF, Berardi VP, Duray PH, Larson MG, Wright EA, Ginsburg KS et al: The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern Med 1994, 121(8):560-567.

2. Asch ES, Bujak DI, Weiss M, Peterson MG, Weinstein A: Lyme disease: an infectious and postinfectious syndrome. J Rheumatol1994, 21(3):454-461.

3. Wormser GP, Dattwyler RJ, Shapiro ED, Halperin AJ, Steere AC, Klempner MS, Krause PJ, Bakken JS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB: The clinical assessment, treatment, and prevention of Lyme disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis 2006, 43: 1089-1134. 10.1086/508667 10.1086/508667

4. Cameron, D.J., Johnson, L.B., and Maloney, E.L. (2014). Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Review of Anti-Infective Therapy 12 (9), pp. 1103-1135. Retrieved May 4, 2016 from https://www.guideline.gov/…/evidence-assessments-and-guidel…

5. Johnson, Lorraine & Stricker, R. The Infectious Diseases Society of America Lyme Guidelines: A cautionary tale about the development of clinical practice guidelines. Philosophy, Ethics and Humanities in Medicine, 2010, 5:9/DOI: 10.1186/1747-5341-5-9.

6. Press Release: Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter, Press release issued May 1, 2008. http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284

7. Lee D, Vielemeyer O. Analysis of Overall Level of Evidence BehindInfectious Diseases Society of America Practice Guidelines. Arch Intern Med. 2011;171(1):18-22. doi:10.1001/archinternmed.2010.482. http://archinte.jamanetwork.com/article.aspx…

8. Shaneyfelt, TM, Centor, RM: Reassessment of clinical practice guidelines: go gently into that good night. JAMA 2009, 301:868-869.

9. Massachusetts General Laws, Part I, Title XVI, Chapter 112, Section 12DD (2010) https://malegislature.gov/…/PartI/Ti…/Chapter112/Section12DD

10. Lyme disease in Massachusetts: A Report Issued by the Special Commission to Conduct an Investigation and Study of the Incidence and Impacts of Lyme Disease, February, 2013. http://archives.lib.state.ma.us/handle/2452/207251

11. Hook, S., Nelson, C., and Mead, P. (2013). Self-reported Lyme disease diagnosis, treatment, and recovery: Results from 2009, 2011, & 2012 HealthStyles nationwide surveys. Presented at the 13th International Conference on Lyme Borreliosis and other Tick-Borne Diseases, Boston, MA, August 19, 2013. Quoted in http://www.poughkeepsiejournal.com/…/lyme-antibiot…/7008045/

12. Vanderhoof IT, Vanderhoof-Forschner KMB: Lyme Disease: The Cost to Society: Contingencies Jan/Feb 1993 p 422-48

13. Adrion, R., Aucott, J., Lemke, K., & Weiner, J. Health Care Costs, Utilization and Patterns of Care Following Lyme Disease:

http://journal.plos.org/plosone/article…

14. Stricker, RB, Green CL, Savely VR, ChamallasSN, Johnson L: Safety of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease. Minerva Medica 2010 February, 101(1):1-7.

15. Dermatologic Disease Database (2013). Minocycline. Retrieved May 12, 2013 from http://www.aocd.org/…/dermatologic_diseases/minocycline.html

16. Cameron DJ: Insufficient evidence to deny antibiotic coverage to chronic Lyme disease patients. Med Hypotheses 2009, 72:688-691.

17. Alliance for the Prudent Use of Antibiotics (APUA). Science of Resistance: Antibiotics in Agriculture - The Risk to Human Health. 2014

http://emerald.tufts.edu/…/about_issue/antibiotic_agri.shtml

18. Embers ME et al: Persistence of Borreliaburgdorferi in rhesus macaques following antibiotic treatment of disseminated infection. PLoS One 2012;7(1):e29914.

19. Lewis, K. Presentation at the annual Lyme disease conference, Massachusetts General Hospital, Boston, 2015.

20. Sharma, B, Brown, A, Matluck, N, Hu, L, Lewis, K. Borrelia burgdoferi, the Causative Agent of Lyme Disease, forms Treatment-Resistant Persister Cells. Antimicrobial Agents and Chemotherapy/ASM.org, August, 2015, Volume 59, Number 8.

21. Hu, Linden. Presentation at the annual Lyme disease conference, Massachusetts General Hospital, Boston, 2015.

22. Volkman, David, Ph.D., M.D. Emeritus Professor of Medicine and Pediatrics, SUNY, Stony Brook, NY. Comments: Regarding Lyme disease (LD) treatment recommendations. Retrieved May 12, 2013 from http://georgialymedisease.org/yahoo_site_admin/assets/…/ws_-Volkman_1_comments_IDSA_guidelines.100215315.pdf

23. Center for Health Information and Analysis (2014). Mandated Benefit Review of H.B. 989: An Act Relative to Lyme Disease Treatment Coverage. Retrieved May 4, 2016 from http://www.chiamass.gov/…/r/pu…/14/h989-mbr-lyme-disease.pdf

24. DeLong, A, Blossom, B, Maloney, E & Phillips, S. Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistician review of randomized, placebo-controlled, clinical trials. Contemp Clin Trials. 2012 Nov;33(6):1132-42. doi:

10.1016/j.cct.2012.08.009. Epub 2012 Aug 19.

http://www.ncbi.nlm.nih.gov/m/pubmed/22922244/

25. Fallon, B. Presentation at the annual Lyme disease conference, Massachusetts General Hospital, Boston, 2015.

26. Fallon, B, Petkova, E, Keilp, J & Britton, C. A Reappraisal of the U.S. Clinical Trials of Post-Treatment Lyme Disease Syndrome. The Open Neurology Journal, 2012, 6 (Suppl 1-M2), 79-87.

27. Zubcevek, N. Testimony before the public hearing on Lyme disease convened by Representative Hogan, Spring, 2016.

28. Confirmed Lyme disease cases by age and sex--United States, 2001-2010, United States, 2001-2010, http://www.cdc.gov/lyme/stats/graphs.html

29. Bloom BJ, Wyckoff PM, Meissner HC, Steere AC. Neurocognitive abnormalities in children after classic manifestations of Lyme disease. Pediatr Infect Dis J, 17(3), 189-196 (1998)

30. McAuliffe P, Brassard MR, Fallon B. Memory and executive functions in adolescents with post-treatment Lyme disease. ApplNeuropsychol. 2008;15(3):208-219.

31. Tager FA, Fallon BA, Keilp J, Rissenberg M, Jones CR, LiebowitzMR. A controlled study of cognitive deficits in children with chronic Lyme disease. J Neuropsychiatry Clin Neurosci. 2001;13(4):500-507.

32. Hamlen, R & Kliman, D. Lyme disease: Etiology, Neuropsychological Sequelae and Educational Impact. Newspaper of the National Association of School Psychologists, 2007, 34-36.

33. Fallon BA, Kochevar JM, Gaito A, Nields JA. The underdiagnosis of neuropsychiatric Lyme disease in children and adults. Psychiatr Clin North Am. 1998;21(3):693-703, viii.

Prepared by

The Massachusetts Lyme Disease Legislative Task Force

lymebill@gmail.com

.

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

Link here- https://www.facebook.com/sheila.statlender

***

Fox News Video

http://www.fox25boston.com/video?videoId=413361235&videoVersion=1.0

Baker's Veto:

Dear All,

As we expected, Governor Baker has vetoed the bill. He has also filed an alternate bill which is unacceptable.

The legislature is prepared to override his veto, but they must hear from us in the largest numbers possible.

The message is simple and direct:

"Please OVERRIDE Governor Baker's veto of H4491, the Lyme treatment coverage bill."

The House and Senate will be in formal session on Saturday and Sunday, which is when the override vote can occur. We need to hit the ground running, and begin contacting them.

Stay tuned for further information.

WE CAN DO THIS!!!

Warmly,

Sheila

On behalf of 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

***

LymeDisease.org

Breaking news–MA Lyme insurance bill goes back to governor

LikeShow more reactionsCommentShare

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Lyme Disease Association July 29, 2016

MA RESIDENTS ALERT! ACTION NEEDED TODAYFRIDAY!

29 July 2016

Last Updated: 29 July 2016

Governor Vetoes Patient Lyme Language--Governor Baker has vetoed the H4491. He has also filed an alternate bill which is unacceptable. The legislature is preparing to override his veto, but MA residents ONLY must continue to urge them to do so in the largest numbers possible. The message is simple and direct: please OVERRIDE Governor Baker's veto of H4491, the Lyme treatment coverage bill.

The House and Senate will be in formal session on Saturday and Sunday, which is when the override vote can occur. We need to contact them now. Massachusetts residents only - and each person should contact only her/his own state representative and state legislator.

(This action is supported by the Lyme Disease Association, Inc. which had already testified originally on bill and also written the Governor)

Click here for history of bill actions

Message above from the 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

Link Here- https://www.lymediseaseassociation.org/195-state-legislation-landing-page/state-legislation/state-activities/massachusetts/1551-ma-residents-alert-action-needed-today-friday

***

July 28, 2016

Just an update to let you know that the Massachusetts governor vetoed the Lyme bill this evening, and actually proposed a different bill in its place. The legislators will have two session days left in which to override the veto. We shall see.

Regards,

XXXX

xxxxxxxxx

***

Ma Lyme Coalition Facebook

July 28, 2016

MA Lyme Coalition

Yesterday at 8:46pm ·

LEGISLATIVE UPDATE: Governor Baker chose to veto our bill. As of 7:50 pm our bill sponsor reports the House is actively preparing to override the veto and then it will be up to Senate to do the same. We remain confident in the support of our legislators.

Please contact your State Rep and senator asking for their support to override Governor Baker's veto of H4491. This is extremely time sensitive as the end of the legislative session is upon us. Please take action ASAP. Join us on twitter @LymeCoalition using ‪#‎OverrideLymeVeto‬.

We will continue to keep you posted!

Latest from LymeDisease.org's news blogs

Massachusetts governor has vetoed Lyme insurance bill. Sponsors seek to override it. You can help.

A bill to ensure insurance coverage for Lyme disease treatment was vetoed by Governor Baker. There's only a small window of time for an override.

MA residents, click here for Voter Voice. Use it to urge your legislators to override the veto.

For those on Twitter: Use #OverrideLymeVeto to tweet & share.

Link Here- http://campaign.r20.constantcontact.com/render?m=1101915345495&ca=1b96fcc3-c130-4536-9f48-2fb563067f60

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Ma Lyme Coalition Facebook

MA Lyme Coalition

July 27 at 9:44am ·

LEGISLATIVE UPDATE! Governor Baker has until tomorrow Thursday, July 28th to sign or veto. Please take a moment to call his office and ask him to sign the Lyme bill 617-725-4005. Should Charlie Baker decide to veto and not sign the bill it will go first to the House and then to Senate for override. We have been assured by our bill sponsor, Senator Anne Gobi, "there will be an all out effort to get this done" and done before our short deadline. Our House sponsor has just reported "the House is ready to go." Please make your phone calls, RT our tweets @LymeCoalition and keep a positive attitude.

***

Today's Legislation Update and Action Alert for MA Residents:

Dear All,

It is critical that we keep the pressure on Governor Baker to sign H. 4491, the Lyme treatment coverage bill! You're doing great so far, but it's important to continue.

If Governor Baker should veto the bill, the legislature is preparing to override it. We need to be sure that our legislators will not be dissuaded by our opponents and their expensive lobbyists! That's why we need to keep calling and writing our own legislators as well.

Call the Governor at 617.725.4005 or use his online form at http://www.mass.gov/…/constituent-…/contact-governor-office/ (scroll to the bottom) -- and ask him to sign H.4491, the Lyme treatment coverage bill.

You can also contact your own Representative and Senator and thank them for their past support (they voted TWICE to pass the bill AND voted to reject the Governor's changes!!). Ask them to continue to support the bill, in the event that they need to override a veto by the Governor.

Find their contact info here: https://malegislature.gov/People/Search

Thank you!

Warmly,

Sheila

On behalf of 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

***

July 19, 2016

Both House and Senate have voted to reinstate the preferred language for the Lyme treatment coverage bill. It includes an emergency preamble, meaning it will be effective immediately upon passage.

The bill is now designated as H.4491. We would appreciate everyone, in state or not, to briefly and politely call Governor Baker's office at 617-725-4005 and make a statement in favor of H.4491, the Lyme disease insurance bill. If they ask where you are from, be honest, but say why you (and the rest of the country) are so interested in seeing this legislation pass.

This is make or break time. The Governor can no longer change the bill, he can only pass it, do nothing (in which it passes), or veto it. If he vetoes, it will take 2/3 each in the House and Senate to override. We have enough votes in co-sponsors alone. It is merely a question of whether or not they are willing.

Fingers crossed,

xxxxx, xxxxx

MA Lyme Legislative Task Force

***

***

On Friday, both the Massachusetts House and Senate voted overwhelmingly to reject Governor Baker's edits to the Lyme insurance mandate.

The legislature can now return to consider the original proposal, which would mandate insurance coverage for long term treatment of Lyme disease when prescribed by a licensed physician.

Interestingly, "long-term antibiotic therapy" has already been described in Mass General Law (Chapter 112 section 12DD) as "the administration of oral, intramuscular or intravenous antibiotics singly or in combination, for periods of time in excess of four weeks." By that definition, even the IDSA in its guidelines recommends long-term treatment (an additional month's worth) under certain conditions.

Under Chapter 112 §12DD, doctors may prescribe long term for Lyme without fear of censure. The additional legislation simply adds that insurance must pay for it.

Sharon Hawkes, MLIS

Director, Nahant Public Library, MA

Member, Mass Lyme Legislative Task Force

***

July 16, 2016

On Friday, both the Massachusetts House and Senate voted overwhelmingly to reject Governor Baker's edits to the Lyme insurance mandate.

The legislature can now return to consider the original proposal, which would mandate insurance coverage for long term treatment of Lyme disease when prescribed by a licensed physician.

Interestingly, "long-term antibiotic therapy" has already been described in Mass General Law (Chapter 112 section 12DD) as "the administration of oral, intramuscular or intravenous antibiotics singly or in combination, for periods of time in excess of four weeks." By that definition, even the IDSA in its guidelines recommends long-term treatment (an additional month's worth) under certain conditions.

Under Chapter 112 §12DD, doctors may prescribe long term for Lyme without fear of censure. The additional legislation simply adds that insurance must pay for it.

This is simply an update. If you would like to discuss further, please reply off list so as not to impede the purpose of mmi.

Regards,

xxxxxx

Member, Mass Lyme Legislative Task Force

Lyme bill backers slam gov’s treatment curbs

Lindsay Kalter Thursday, July 14, 2016

Credit: Christopher EvansState Rep. David Linsky

2 COMMENTS

Proponents of a bill to require insurance coverage for a controversial long-term Lyme disease treatment are urging lawmakers to reject restrictions proposed by the governor.

The Lyme bill mandates insurance companies to cover prescriptions beyond the current three-week standard. It was included in the state budget.

Gov. Charlie Baker proposed an amendment Friday that would require insurance companies to cover antibiotic treatment beyond three weeks only if it is prescribed by a rheumatologist, neurologist or infectious disease specialist. A vote on the governor’s amendment could happen as early as today.

Lyme disease usually comes with a tell-tale bulls-eye rash and can cause fever, joint pains and neurological issues. Patient advocates say chronic Lyme disease can cause lingering and debilitating symptoms, and they want any doctor to be able to prescribe treatment as long as symptoms persist.

Trish McCleary, a Lyme activist and Sturbridge resident, said the amendment would make it “virtually impossible for a Lyme patient to get the help they’re going to need.”

“I just hope somehow the governor ends up with the original bill on his desk with the language that was delivered to him and overwhelmingly supported by the Massachusetts legislature,” said McCleary, who said she has struggled with the crippling consequences of chronic Lyme disease for several years. “It would give thousands of Lyme patients in Massachusetts at least an option.”

But infectious disease specialists have come out against the legislation, warning that a long-term antibiotic regimen can lead to diabetes, heart disease and antibiotic-resistant “suberbugs.”

“The more antibiotics you get, the more likely there is to be resistance,” said Dr. Ben Kruskal, Somerville-based chief of infectious diseases for Atrius Health. “I think the governor’s amendments make it a good deal better than the original language proposed.”

Rep. David Linsky, one of the bill’s sponsors, said, “I’m very disappointed that the governor has chosen to propose these amendments to the Lyme bill. I don’t think that the governor intended to do this, but if his amendment became law, it would actually make obtaining treatment more difficult and more costly.”

Linsky hopes for a vote today that would restore the bill to its previous form.

AUTHORS

Lindsay Kalter

Link Here- http://www.bostonherald.com/news/local_politics/2016/07/lyme_bill_backers_slam_gov_s_treatment_curbs

***

Doctors urge Governor Baker to reject long-term antibiotics for Lyme disease

State House News Service

By Andy Metzger

Posted Jul. 8, 2016 at 10:51 AMUpdated Jul 8, 2016 at 10:59 AM

Warning that an insurance mandate for long-term antibiotic treatment of Lyme disease runs counter to medical science, the Massachusetts Infectious Disease Society is urging Gov. Charlie Baker to strip the provisions from a $39.15 billion spending bill on his desk.

Representing more than 500 infectious disease specialists, the society asserts that long-term intravenous antibiotic therapy can be dangerous and potentially fatal while also possibly leading to "superbugs" immune to current treatments.

The budget bill included a version of a provision adopted by the House requiring insurers to cover long-term antibiotic therapy for Lyme disease when ordered by a physician, including "off-label" usage of drugs.

Rep. David Linsky, a Natick Democrat, celebrated the mandate's inclusion in the budget and said long-term antibiotic treatment of Lyme disease costs $50,000 to $60,000.

"Lyme disease has been an epidemic in this country but it has particularly hard-hit the Commonwealth of Massachusetts," Linsky told his colleagues.

The tick-borne illness causes fever, fatigue and a rash, and if left untreated it can affect the nervous system, according to the Centers for Disease Control and Prevention.

"I have profound empathy for patients who are ill and have been told their illness is due to 'chronic' Lyme disease," wrote Dr. Daniel McQuillen, president of the society. "I do not doubt that these individuals are suffering, but many report non-specific symptoms that could be attributable to a number of medical conditions . . . While there are clearly patients with Lyme infection who have chronic, vexing symptoms after antibiotics have eradicated the causative bacteria we do not yet know the cause."

The measure is popular in the 200-member Legislature. A similar bill sponsored by Linsky, who served on a special Lyme disease commission, received co-sponsorships of more than 130 members this session.

A former state secretary of health and human services who for a decade led the insurer Harvard Pilgrim Health Care, Baker is well versed in health care matters. The governor has until Monday to take action on the budget. Asked about the governor's plans in regard to the Lyme mandate, a spokesman said only that the budget is under review.

The health insurance and small business community have also opposed the Lyme disease provision and other legislative attempts to mandate coverage, arguing that state-imposed mandates tip the scales towards big corporations. Large organizations that can self-insure under federal rules are not subject to state mandates.

"It is ironic that Massachusetts, where the cost of health care and health insurance is such an oft-discussed topic, continues to consider and enact new health care mandates," wrote National Federation of Independent Business Massachusetts State Director William Vernon, in a letter to the governor urging a veto of the Lyme disease provisions.

The Massachusetts Association of Health Plans also wants Baker to veto the language.

JULY2016MA residents: Lyme insurance mandate needs your help now

***

July 9, 2016

Lucy said, "Anyone up there actually had any experience killing a bad Lyme bill?"

Yes.

And most of the Task Force members got the current law passed, protecting our docs in Massachusetts. We have over 140 co-sponsors on the original legislation. We have committee chairs declaring their interest in an override, and powerful committee chairs waiting to hear from us as to what we want.

You are coming late to this party on purpose. We were backing up motivated legislators themselves with the information they needed to keep this bill on track. Countless hours, meetings, papers, testimonies. All as far off the radar as possible. For over two years.

So just because you are learning about this now doesn't mean it wasn't carefully thought through. It still is.

xxxxx

Mass Lyme Legislative Task Force

***

XXXXX said... "You are coming late to this party on purpose."

Not letting folks know what is going on till the last minute (on purpose as you stated), and then all of us seeing 9 emails in less than 3 hours posted here saying it passed, no it didn't pass, it is ok, no it isn't, "confident they won't touch it" (and they did), "celebrating quietly", "celebration premature", there is this letter, "fairly certain", "only allow board certified infectious disease specialists, rheumatologists, and neurologists to prescribe long term", "trust me", blah blah blah....

You'll have to agree that kind of uncertainty and flip flopping would surely unsettle most people and raise sincere concerns for those whose lives will be affected by the outcome.

And yes, I know how draining and difficult working on bills can be. I've been stuck with that miserable job quite a few times myself. Too many times.

Glad you all have it under control. Thanks for clearing that up.

Lucy Barnes

***

July 8, 2016

Nope, I am afraid our celebration was premature.

The Governor issued a letter stating that he is amending the wording to only allow board certified infectious disease specialists, rheumatologists, and neurologists to prescribe long term. We are sure that this was in response to the Massachusetts Infectious Diseases Society, whose article protesting the legislation looked strangely similar to the letter that the IDSA always writes to block legislation.

Funny that they said that long-term treatment didn't work, but that it was fine if these specialists prescribed it!

Back to the drawing board,

xxxxxxx

mass Lyme Legislative Task Force

***

July 8, 2016

Yes, the Governor's budget has been released on Mass.gov, so we are confident that this is his recommended budget. All the verbiage of the Lyme bill as it went to his desk is intact. The legislature has until July 31 to override, but we are confident that they will not touch the Lyme legislature that was already agreed to by them.

So we are celebrating quietly for now....

This Massachusetts legislation will mandate that a Massachusetts insurance plan (in most instances) "shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a licensed physician after making a thorough evaluation of the patient's symptoms, diagnostic test results, or response to treatment."

xxxxxx, xxxxx

Mass Lyme Legislative Task Force

***

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. Click here to send your message now.

POLITICAL ACTION: State Legislation in the Lymelight

Massachusetts residents, please contact your governor now

MA House Includes Linsky Provision to Provide Treatment Coverage for Lyme Disease Sufferers

NEWS: Legislative hearing on Massachusetts Lyme insurance bill Nov. 13

Link Here- https://www.lymedisease.org/restore-lyme-insurance-mandate/

‪#‎LymeDiseaseChallenge‬: Massachusetts governor shamefully re-writes mandate on ‪#‎Lyme‬ disease treatment denying patients access to insurance coverage ‪#‎SeparationOfPowers‬

Trish McCleary of Sturbridge, co-founder of the Massachusetts Lyme Coalition and Sturbridge Lyme Awareness of Massachusetts, questioned in a statement whether Mr. Baker, "who was once an insurance industry CEO, will allow insurance companies to dictate and define our access to affordable and necessary treatment here in Massachusetts despite years of public outcry."

She continued: "The thought of amending a bill to the point where it no longer serves those it is intended to serve is irresponsible, to say the least."

http://m.telegram.com/…/mass-governor-narrows-mandate-on-ly…

LDC Note: Gov. Baker blatantly put special interests above the health of his constituents, completely undermining legislative intent. Indeed, he has completely eviscerated and ignored the legislative intent.

Please be sure to comment on the article and tweet Governor Baker here: https://twitter.com/MassGovernor

You can find LDC tweets to Governor Baker here: https://twitter.com/LymeChallenge/with_replies

Mass. governor narrows mandate on Lyme disease treatment

Gov. Charles D. Baker Jr. dampened hopes for mandating broad-based insurance coverage of extended antibiotic treatment for Lyme disease…

TELEGRAM.COM

Link Here- https://www.facebook.com/natcaplyme/

***

NatCapLyme

Yesterday at 11:20am ·

Unfortunately, the ‪#‎Lyme‬ bill which passed in both chambers in Massachusetts, has been changed by the Governor. It is not good news for #Lyme patients.

Baker narrows focus of bill on Lyme disease

BOSTON — Gov. Charlie Baker has settled on an alternative to the Legislature's broad mandate for long-term antibiotic treatment of Lyme disease.

BERKSHIREEAGLE.COM

NatCapLyme

July 8 at 3:38pm ·

Infectious diseases doctors in Massachusetts are against a bill which would require insurance companies to pay for long-term treatment of ‪#‎Lyme‬disease.

Doctors urge Governor Baker to reject long-term antibiotics for Lyme disease

Warning that an insurance mandate for long-term antibiotic treatment of Lyme disease runs counter to medical science, the Massachusetts Infectious Disease

ENTERPRISENEWS.COM|BY ANDY METZGER STATE HOUSE NEWS SERVICE

Massachusetts residents, please contact your governor now

Letter from the Massachusetts Lyme Legislative Task Force to residents of their state:

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.

Please begin calling and/or emailing 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!

There are three ways you can do this:

1. Call the Governor’s office and tell him that you want him to sign the budget with the Lyme amendment intact:

617-725-4005

2. Use the form on the Governor Baker’s website to email this message to him (be sure to scroll down to the bottom to find the form):

http://www.mass.gov/governor/constituent-services/contact-governor-office/

Or:

3. Fax your message: 617-727-9725

Please start doing this now!

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.

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!

Best regards,

The Massachusetts Lyme Legislative Task Force

Helen Brown – Whitman

Donna Castle – Ayer

Janice Dey – Westport

Susan Fairbank-Pitzer – Danvers

Sharon Hawkes – Nahant

Jayme Kulesz – Groton

Robin LeMieux – Lowell

Sheila Statlender, Ph.D. – Framingham

Related Posts:

NEWS: New Hampshire bill to protect Lyme docs goes to governor

Oregon residents, contact lawmakers about Lyme bill

NEWS: Massachusetts governor signs Lyme doctor protection law

NEWS: Contact Congressional committee about Lyme bill today

Tags : Lyme in Massachusetts, MA Lyme insurance bill

Link Here- https://www.lymedisease.org/ma-gov-contact/

For decades patient advocates have worked with lawmakers on legislation to increase awareness of Lyme disease, create advisory committees, protect doctors who treat with longer courses of antibiotics, and guarantee insurance coverage. They have had mixed success. Click here for a summary of federal and state laws related to Lyme disease.

Voter Voice is a tool to make your voice known

The Massachusetts Lyme insurance mandate was recently amended by the governor in a way that doesn’t help Lyme patients.

Right now, we are asking Massachusetts residents to make use of Voter Voice to contact state legislators about the Lyme disease insurance mandate. Details below.

Famous last words.....

Rest assured- keep the faith.

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 11 at 4:24pm ·

MA Lyme Coalition

July 11 at 4:23pm ·

Rest assured we are working behind the scenes and will not rest until we have a final answer on our bill. Letters have been sent to the entire MA legislature and to Governor Baker regarding our concerns with his amended version. We ask you to please contact your representatives and ask them to vote in favor of the Lyme bill with language that was released from the Conference Committee as this best serves the needs of the Lyme community. Thank you for your continued support!

Keep the faith!

Link here- https://www.facebook.com/SLAM-Sturbridge-Lyme-Awareness-of-Massachusetts-101798586532824/

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 11 at 2:17pm ·

MA Lyme Coalition

July 11 at 2:17pm ·

UPDATE FROM OUR BILL SPONSOR/CALL TO ACTION:

"We are all in agreement that the language as proposed by Governor Baker does not best serve the Lyme community and will be advocating for the language that came out of conference committee."

ACTION: Please contact your State Reps and Senators to ask them to vote in favor of the Lyme bill with language that came out of the conference committee and not the amendment by Governor Baker!

Link here- https://www.facebook.com/SLAM-Sturbridge-Lyme-Awareness-of-Massachusetts-101798586532824/

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 11 at 10:50am ·

MA Lyme Coalition

July 11 at 10:48am ·

LEGISLATIVE UPDATE FROM BILL SPONSOR'S CHIEF OF STAFF: " I want to make a correction on the status on the bill language. I had originally misread the final language, my apologies. The Lyme language was not vetoed, however Governor Baker changed the language to narrow who can prescribe treatment, limiting it to "board certified rheumatologists". As Senator Gobi mentioned, scheduling overrides is set by the Speaker and we are currently working with Rep. Linsky's office on a game plan."

Stay tuned as we continue to work on language and passage!

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 8 at 2:06pm ·

MA Lyme Coalition

Like Page

July 8 at 2:06pm ·

Keep calling our voices must be louder 617.725.4005! Remember IDSA says our disease doesn't exist but MA legislators know better! Feel free to comment on the article as well. http://m.enterprisenews.com/…/doctors-urge-governor-baker-t…

Doctors urge Governor Baker to reject long-term antibiotics for Lyme disease

Warning that an insurance mandate for long-term antibiotic treatment of Lyme disease…

M.ENTERPRISENEWS.COM|BY ANDY METZGER STATE HOUSE NEWS SERVICE

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Share

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 8 at 10:29am ·

We must keep using our voices!

MA Lyme Coalition

Like Page

July ·

It's Day #4. Governor Baker will decide at any point during these next 7 days, so please pick up the phone each day, call Governor Baker's office, and ask for his support for the Lyme Disease Amendment.

PLEASE MAKE YOUR CALLS: 617.725.4005

Who do you want deciding your medical care – insurers or your physician? If you want to help, please call Governor Baker’s office TODAY, July 8th 2016 and ask him to support the Lyme Disease amendment in the fiscal 2017 State Budget Bill. Phone: 617.725.4005

We look to Governor Baker to hear our call for help amidst a public health crisis, in which our personal and collective independence is being challenged. For people who are facing a fight for their lives, Lyme disease is a formidable opponent, and the last concern that people should have is whether they will be denied access by their insurance company to their physician-prescribed treatment.

Governor Charlie Baker, with a simple stroke of his pen, can help thousands of people in Massachusetts and many more to come. Governor Baker, we ask you to help us regain our independence and support the Lyme amendment today!

Please call TODAY:

Phone: 617.725.4005

888.870.7770 (in state)

Fax: 617.727.9725

Please share with friends, family, and neighbors! https://medium.com/…/massachusetts-in-the-bulls-eye-propose…

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 7 at 9:59am ·

MA Lyme Coalition

July 7 at 1:57am ·

Governor Charlie Baker, please see the faces of ‪#‎Lyme‬ disease in Massachusetts. An estimated 50,000 people are infected annually in MA, and many struggle to... access their physician-prescribed treatment. We are more than just a number. We have families, businesses, hopes and dreams. You can help us get well by passing the Lyme Disease amendment today. Please call Governor Baker's office and ask them to support the Lyme Disease amendment today: 617.725.4005

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's photo.

July 7 at 9:58am ·

Please share!

MA Lyme Coalition

Like Page

July 7 at 1:37am ·

Day #3 of our call-in campaign for Life-saving Lyme Legislation

We just spoke with Governor Baker's office and the Lyme bill is on his desk, which means he needs to hear from YOU! Please pick up the phone and call 617.725.4005

Please call Governor Baker’s office TODAY, July 7th 2016 and ask him to support the Lyme Disease amendment in the fiscal 2017 State Budget Bill. Phone: 617.725.4005

Remind the Governor's office that the people of Massachusetts should not have to fight two battles at once: one for their lives and the other for access to life-saving medication.

Let's aim for hundreds more calls today to Governor Baker's office. Please share this post with Massachusetts friends, family, and neighbors. Can you get 3 people or more to call?

MA Lyme Coalition

Like Page

July 6 at 10:48am ·

An Open Letter to Governor Charlie Baker on the Life-saving Lyme Disease amendment by the MA Lyme Coalition. Please read! ‪#‎Lyme‬‪#‎LymeDisease‬ ‪#‎StoptheSuffering‬

Open Letter to Governor Baker

The Life-saving Lyme Disease amendment is on your desk

MEDIUM.COM|BY MICHELLE TRESELER

S.L.A.M. Sturbridge Lyme Awareness of Massachusetts

July 6 at 10:24am ·

Hello S.L.A.M. Friends,

We're almost there but we're not done yet! We continue to need your voice to encourage Governor Baker to sign our mandated insurance bill which is now part of the fiscal 2017 State Budget. We've come so far and one phone call take much time!

Who do you want deciding your medical care – insurers or your physician? If you want to help, please call Governor Baker’s office TODAY, July 6th 2016 and ask him to support the Lyme Disease amendment in the fiscal 2017 State Budget Bill. Phone: 617.725.4005. We look to Governor Baker to hear our call for help amidst a public health crisis, in which our personal and collective independence is being challenged. For people who are facing a fight for their lives, Lyme disease is a formidable opponent, and the last concern that people should have is whether they will be denied access by their insurance company to their physician-prescribed treatment.

Governor Charlie Baker, with a simple stroke of his pen, can help thousands of people in Massachusetts and many more to come. Governor Baker, we ask you to help us regain our independence and support the Lyme amendment today!

Please call TODAY:

Phone: 617.725.4005

888.870.7770 (in state)

Fax: 617.727.9725

Please share with friends, family, and neighbors! https://medium.com/…/massachusetts-in-the-bulls-eye-propose…

MA Lyme Coalition

Trish McCleary, Sturbridge

Michelle Treseler, Newton

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's photo.

July 6 at 9:18am ·

MA Lyme Coalition

Like Page

July 6 at 8:01am ·

Day #2. Here we go! Just spoke with the Governor's aides and their phones are ringing off the hook. They said they are taking a tally and reporting it to the Governor's Chief of Staff. Keep up the good work!!!!! The more calls, the better! Have you called today? Phone: 617.725.4005

Who do you want deciding your medical care – insurers or your physician?

If you answered your physician, then please call Governor Baker’s office TODAY, July 6th 2016 and ask him to support the Lyme Disease amendment in the fiscal 2017 State Budget Bill. Phone: 617.725.4005

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 5 at 6:56pm ·

MA Lyme Coalition

July 5 at 6:48pm ·

Thank you so much for today's tremendous call-in campaign! We heard from Governor Baker's aides that they appreciated all of your phone calls, and that they were quite moved by the personal stories and the sheer number of calls. As of much earlier today, they had well over a hundred and forty phone calls.

Today was the first day of Governor Baker's 10 Day Review. Tomorrow, July 6th is Day #2. Are you up for a 10-Day Challenge? Will you commit to calling in to Governor Baker's office for the next 9 days? Will you commit to reaching out to more friends and family and asking them to do the same?

Next Steps

10 Day Review

(July 2016)

Once approved by both chambers of the Legislature, the Governor has ten days to review it. The Governor may approve or veto the entire budget, or may veto or reduce particular line items or sections, but may not add anything.

Vetoes & Overrides

(July 2016)

The Governor submits his proposed vetoes, reductions, or amendments, which are subject to legislative overrides. The Governor’s vetoes are sustained unless both branches override them by a two-thirds vote.

Final Budget

(July 2016)

The final budget is also known as the General Appropriations Act (GAA).

Other states are watching what happens here very closely. Let's be the forerunners of positive change for the Lyme community and for people to access their physician-prescribed medications. We believe in you – the Massachusetts Lyme community.

Remember, the question is simple. Who do you want deciding your medical care – insurers or your physician? If you want to help, please call Governor Baker’s office and ask him to support the Lyme Disease amendment in the fiscal 2017 State Budget Bill. Phone: 617.725.4005

Together, we can make a difference!

Chris Teubner There is know question..

Our Governor needs to sign this bill for those thousands of us, his constituents who have suffered enough from Massachusetts misdiagnosis and mistreatment around tick borne illness

Thank You for protecting your citizens.

Our Governor needs to sign this bill for those thousands of us, his constituents who have suffered enough from Massachusetts misdiagnosis and mistreatment around tick borne illness

Thank You for protecting your citizens.

Like · Reply · July 5 at 9:07pm

S.L.A.M. Sturbridge Lyme Awareness of Massachusetts

July 5 at 12:58pm ·

Written by MA Lyme Coalition Co founder Michelle Treseler!

Massachusetts in the bulls-eye; Proposed Lyme Disease Measure could save lives

Today — July 5th 2016 — It’s not every day that a Governor can save hundreds of lives.

MEDIUM.COM|BY MICHELLE TRESELER

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsupdated their cover photo.

July 5 at 9:53am ·

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 5 at 8:45am ·

It's Day #4. Governor Baker will decide at any point during these next 7 days, so please pick up the phone each day, call Governor Baker's office, and ask for his support for the Lyme Disease Amendment.

PLEASE MAKE YOUR CALLS: 617.725.4005

Who do you want deciding your medical care – insurers or your physician? If you want to help, please call Governor Baker’s office TODAY, July 8th 2016 and ask him to support the Lyme Disease amendment in the fiscal 2017 State Budget Bill. Phone: 617.725.4005

We look to Governor Baker to hear our call for help amidst a public health crisis, in which our personal and collective independence is being challenged. For people who are facing a fight for their lives, Lyme disease is a formidable opponent, and the last concern that people should have is whether they will be denied access by their insurance company to their physician-prescribed treatment.

Governor Charlie Baker, with a simple stroke of his pen, can help thousands of people in Massachusetts and many more to come. Governor Baker, we ask you to help us regain our independence and support the Lyme amendment today!

Please call TODAY:

Phone: 617.725.4005

888.870.7770 (in state)

Fax: 617.727.9725

Please share with friends, family, and neighbors! https://medium.com/…/massachusetts-in-the-bulls-eye-propose…

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 3 at 11:58am ·

MA Lyme Coalition

July 3 at 11:33am ·

Dear MA Lyme Community,

We 100 percent support the strong, life-saving Lyme disease legislation which is currently an amendment to the 2017 budget, and which is now on Governor Baker’s desk. The measure included in the budget by legislators would protect patients and protect Massachusetts by ensuring that medically-licensed doctors together with their patients, not insurers, determine Lyme disease treatment.

For the past 3 years, we have asked you to call, write, e-mail, testify and explain the need for access to Lyme disease treatment. We have shared each other’s stories and acknowledged the extreme difficulty of fighting for our, or a loved one’s life, while also fighting against insurance companies to receive our physician-prescribed treatment. Together, we have come so far and now we look to Governor Baker and ask him to please hear the voices of the people and of the 140 legislators, and pass this life-saving amendment.

If you didn't receive our full letter, you can e-mail us at lymecoalition@gmail.com

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

July 1 at 2:46pm ·

MA Lyme Coalition added 2 new photos.

Like Page

July 1 at 1:50pm ·

Open Letter to Governor Baker

Over the past 3 years, we have written hundreds of letters like the one below to our elected officials in support of Lyme Disease treatment coverage. It is because of you and your commitment that we have made it this far. Will you join us by writing your letter in support of the Lyme Disease treatment measure to Governor Baker?

Yesterday, the House overwhelmingly supported the measure as an addition to the 2017 proposed budget. Today, the Senate may vote to support the measure. Our Lyme disease treatment coverage measure will then go to Governor Baker's desk as part of the 2017 budget, where he will decide whether to sign or veto. We need his support! Please support the ‪#‎LymeDisease‬ treatment measure Charlie Baker

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

June 30 at 8:55am ·

We're almost there!!!

MA Lyme Coalition

June 30 at 8:55am ·

LEGISLATIVE UPDATE! Our bill has been released from Conference Committee and is headed to the Governor's desk! At first glance it looks like the committee did a good job at combining the House and most recent Senate versions of our bill. Our Senate sponsor expects our bill will survive the last step as it reads, however, we're not done until Governor Baker signs it!

Stay tuned!

Stay tuned!

SECTION 108. Chapter 175 of the General Laws is hereby amended by inserting after section 47GG the following section:-

Section 47HH. (a) For the purposes of this section, “Lyme disease” and “Long-term antibiotic therapy” and “Lyme disease” shall have the same meaning as ascribed to them in section 12DD of chapter 112.

(b) A policy, contract, agreement, plan or certificate of insurance issued, delivered or renewed within the commonwealth that provides medical expense coverage shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a licensed physician after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment. An experimental drug shall be covered as a long-term antibiotic therapy if it is approved for any indication by the United States Food and Drug Administration; provided, however, that a drug, including an experimental drug, shall be covered for an off-label use in the treatment of Lyme disease if the drug has been approved by the United States Food and Drug Administration.

SECTION 109. Section 47HH of said chapter 175 is hereby repealed.

SECTION 110. Subsection (b) of section 3 of chapter 175H of the General Laws, as appearing in the 2014 Official Edition, is hereby amended by adding the following paragraph:-

(3) This section shall not apply to a discount, rebate or other payment by a pharmaceutical manufacturing company to a patient or another person on the patient’s behalf, other than the prescriber of the drug or biologic, for health care items or services related to the patient’s use of a drug or biologic of the manufacturer where such items or services are required under a Food and Drug Administration Risk Evaluation and Mitigation Strategy or are for the purpose of monitoring or facilitating the use of the drug or biologic in a manner consistent with the drug or biologic’s approved labeling.

SECTION 111. Chapter 176A of the General Laws is hereby amended by inserting after section 8II the following section:-

Section 8JJ. .(a) For the purposes of this section, “Long-term antibiotic therapy” and “Lyme disease” shall have the same mean as ascribed to them in section 12DD of chapter 112.

(b) A contract between a subscriber and the corporation under an individual or group hospital service plan that is delivered, issued or renewed within the commonwealth shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a licensed physician after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment. An experimental drug shall be covered as a long-term antibiotic therapy if it is approved for any indication by the United States Food and Drug Administration; provided, however, that a drug, including an experimental drug, shall be covered for an off-label use in the treatment of Lyme disease if the drug has been approved by the United States Food and Drug Administration.

SECTION 112. Section 8JJ of said chapter 176A is hereby repealed.

SECTION 113. Chapter 176B of the General Laws is hereby amended by inserting after section 4II the following section:-

Section 4JJ. .(a) For the purposes of this section, “Long-term antibiotic therapy” and “Lyme disease” shall have the same mean as ascribed to them in section 12DD of chapter 112.

(b) A subscription certificate under an individual or group medical service agreement delivered, issued or renewed within the commonwealth shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a licensed physician after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment. An experimental drug shall be covered as a long-term antibiotic therapy if it is approved for any indication by the United States Food and Drug Administration; provided, however, that a drug, including an experimental drug, shall be covered for an off-label use in the treatment of Lyme disease if the drug has been approved by the United States Food and Drug Administration.

SECTION 114. Section 4JJ of said chapter 176B is hereby repealed.

SECTION 115. Chapter 176G of the General Laws is hereby amended by inserting after section 4AA the following section:-

Section 4BB. (a) For the purposes of this section, “Long-term antibiotic therapy” and “Lyme disease” shall have the same mean as ascribed to them in section 12DD of chapter 112.

(b) An individual or group health maintenance contract shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a licensed physician after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment. An experimental drug shall be covered as a long-term antibiotic therapy if it is approved for any indication by the United States Food and Drug Administration; provided, however, that a drug, including an experimental drug, shall be covered for an off-label use in the treatment of Lyme disease if the drug has been approved by the United States Food and Drug Administration.

SECTION 116. Section 4BB of said chapter 176G is hereby repealed.

….

SECTION 200. Sections 109, 112, 114 and 116 shall take effect on July 1, 2021.

S.L.A.M. Sturbridge Lyme Awareness of Massachusetts

June 21 at 6:08pm ·

http://m.telegram.com/…/lawmakers-add-extended-lyme-coverag…

Lawmakers add extended Lyme coverage amendment to budget

Legislators who have been fighting unsuccessfully for years to get a law requiring insurance companies to cover extended…

M.TELEGRAM.COM

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

June 1 ·

MA Lyme Coalition

June 1 ·

Hello MA Lyme Community,

Following our unanimous vote by MA Senate, we have submitted language changes directly to our Amendment/Bill Sponsors, based on recommendations of our legal counsel, who reviewed things over the holiday weekend. Remember, the Conference Committee must combine our House and Senate versions. As we mentioned in our last update the Senate version had language changed before it was voted on. We are determined to ensure nobody adds language that will allow loopholes which could render our bill useless to Lyme patients. We will continue to keep you updated as the Amendment is reviewed by Conference Committee.

Thank you for your continued support!

Massachusetts Lyme Coalition (MLC)

Trish McCleary, Sturbridge MA

Michelle Treseler, Newton MA

lymecoalition@gmail.com

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

May 27 ·

MA Lyme Coalition

May 27 ·

Dear Massachusetts Lyme Community,

As we head into this holiday weekend, we have been given another gift of hope. Our determined efforts continue to be rewarded. Although we navigate new and potentially challenging terrain, we are making progress.

Your calls, your e-mails, your letters, your tweets, your faces (MA Faces of Lyme project), and the willingness to share your stories have made all the difference. Thank you to all who participated in the recent ‪#‎SenBudget‬ twitter campaign yesterday. Together, we have made tremendous progress and together, we hope to see this bill arrive with the most effective, patient-friendly wording intact on the Governor's desk and be signed into law.

As you know, yesterday the Senate budget amendment was unanimously adopted. This was no small feat for Senator Gobi, and we are grateful for her tremendous support and leadership.

Legislative Update

Thanks to Representative Linsky and Senator Gobi, the House budget amendment and the Senate budget amendment have both been adopted, however, the Senate budget amendment's wording differs from the House amendment, so the two amendments are now headed to the "conference committee" to be reconciled.

Main changes to the Senate budget amendment’s wording include the following:

· Additional language regarding electronic health records

· The term "licensed physician" has been replaced with "licensed health care provider"

· Additional wording regarding off-label use of medication

Importantly, we are consulting with many of the Massachusetts lawyers who helped a member of the Massachusetts Lyme Coalition to re-write the bill over a year ago. Our team is comprised of talented lawyers and health policy experts in our community. Their experience, input and advice is invaluable as we discuss the implications of these changes openly with our legislators and decide upon our recommendations.

Your analysis and feedback is welcome as well. This is a community effort! Please e-mail us at lymecoalition@gmail.com and we will be sure to include your concerns in our legislative working group.

There are still significant hurdles that we need to overcome (e.g., the conference committee's adoption of our preferred language and the Governor's support). However, we have come further than many believed was possible. We have proved that our voices are strong and together with our allies in the Massachusetts Senate and House we have pushed our bill forward. So. what are the next steps?

Next Steps

Conference Committee

(June-July 2016)

House and Senate leadership assign six members to a "conference committee" to negotiate the differences between the House and Senate bills. This committee meets over the course of June to produce a compromise budget which is voted up or down by the full House and Senate. Importantly, this committee will decide on the final language of our bill. The conference committee report cannot be amended.

next step

10 Day Review

(July 2016)

Once approved by both chambers of the Legislature, the Governor has ten days to review it. The Governor may approve or veto the entire budget, or may veto or reduce particular line items or sections, but may not add anything.

next step

Vetoes & Overrides

(July 2016)

The Governor submits his proposed vetoes, reductions, or amendments, which are subject to legislative overrides. The Governor’s vetoes are sustained unless both branches override them by a two-thirds vote.

next step

Final Budget

(July 2016)

The final budget is also known as the General Appropriations Act (GAA).

The next steps may go smoothly, or it may be a bit dicey. One thing is definite: we will need your continued efforts and support. Since we are heading into a holiday weekend, and the legislative conference committee members have yet to be appointed, we are taking our time to review, collaborate, and discuss before making our recommendations. We will be in touch with our legislative working group's recommendations as soon as they have been agreed upon.

Other states are watching what happens here very closely. Let's be the forerunners of positive change for the Lyme community and for people to access their physician-prescribed medications.

Together, we can make a difference!

MLC

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

May 26 ·

MA Lyme Coalition

May 26 ·

Our ‪#‎SenBudget‬ Amendment 427 has passed the Senate unanimously today! There are, however, some language changes therefore the bill will go to 'Conference Committee' before getting to Governor's desk. Please stand by while we evaluate these language changes.

S.L.A.M. Sturbridge Lyme Awareness of Massachusetts

May 25 ·

LIVE MA Senate Chamber today. We want a YES on ‪#‎SenBudget‬Amendment 427.

https://malegislature.gov/Events/EventDetail…

Event Details

MALEGISLATURE.GOV

S.L.A.M. Sturbridge Lyme Awareness of Massachusetts

May 25 ·

https://malegislature.gov/Events/EventDetail…

MA SENATE LIVE!

Event Details

Screen reader users: Tab into the tool bar. Then turn the virtual cursor/buffer off to enable pass-through mode. For JAWS: Insert + Z. For NVDA: Caps Lock + Space Bar. For Window-Eyes: Ctrl + Shift + A. Right and left arrow keys navigate tool bar controls. Keyboard shortcuts are also available while...

MALEGISLATURE.GOV

S.L.A.M. Sturbridge Lyme Awareness of Massachusettsshared MA Lyme Coalition's post.

May 23 ·

MA Lyme Coalition

May 23 ·

We continue to work closely with our bill sponsor, Senator Anne Gobi. Our Senate Budget Amendment, EHS 427, should be voted on this week sometime. We will continue to post updates and whatever 'Call To Action' is appropriate and necessary. Thank you for your continued support and dedication. Together we can make a difference!

MA Lyme Coalition

July 11 at 9:26am ·

Dear MA Lyme Community,

We continue to support our bill (without inclusion of Governor Baker's proposed amendments) and ask the legislature to continue to move forward with our important life-saving legislation.

It appears that Governor Baker sent the bill back to the legislature with recommended amendments. .

Please find attached the document with Governor Baker's recommendations, in which he states:

The following recommendations were made by Governor Baker, and we have detailed why we are against the inclusion of Governor Baker's amendments below:

In each relevant section, it looks like Governor Baker's office:

(1) Substituted the following

"when determined to be medically necessary and ordered by a board certified rheumatologist, infectious disease specialist, or neurologist after making a thorough evaluation of the patients symptoms, diagnostic test results, or response to treatment."

for

"when to be medically necessary and ordered by a licensed physician after making a thorough evaluation of the patients symptoms, diagnostic test results, or response to treatment."

This is obviously problematic, as it cuts out most PCPs. Thus, it's effectively requiring a second opinion (or that patients see a higher cost specialist), which will have the net result of significantly diminishing the number of patients who actually can have their medication covered. Frankly, there is no practical reason why a board-certified or licensed physician other than a rheumatologist, infectious disease specialist, or neurologist should be unable to prescribe antibiotics.

and

(2) Removed this sentence:

"An experimental drug shall be covered as a long-term antibiotic therapy if it is approved for any indication by the United States Food and Drug Administration; provided, however, that a drug, including an experimental drug, shall be covered for an off-label use in the treatment of Lyme disease if the drug has been approved by the United States Food and Drug Administration."

This is obviously not helpful. It will likely be used to prevent off-label uses (e.g., no coverage of drugs that are not antibiotics as part of a Lyme treatment protocol because those medicines aren't labeled for treatment of Lyme).

Ultimately, you can tell that these amendments are predicated not on policy but on pressure from the insurance industry (and members of the medical establishment). Baker's office's reasoning in the third paragraph (starting with "While I support") is entirely off-base: (i) long-term antibiotic therapy is recognized under the ILADS guidelines; (ii) the off-label use provision is not setting problematic precedent (and physicians routinely prescribe off-label uses, even if pharmaceutical companies are prohibited for advertising for those uses); and (iii) there is no reason for giving the Commonwealth, its employees, or insurers "time to assess and prepare for the fiscal impact of this proposal," since the impact will be minimal (as shown in the CHIA report). The January 1, 2017 start isn't hugely problematic on its face (lots of laws have an "effective date" other than the date upon which they're signed), but this means another 6 months of insurance denials for sick Massachusetts residents.

What happened?

Role of the Governor

When a Bill has been Enacted by both the House and Senate and signed by the Speaker of the House and Senate President, it is sent to the Governor's desk. The Governor now has several options regarding this Bill. First, the Governor can simply sign the Bill and it becomes a law. If an Emergency Preamble is attached to the Bill it will become effective immediately. Otherwise the effective date is ninety (90) days after the Governor signs the Bill. Second, the Bill can be vetoed if the Governor does not agree with its content. When a Bill is vetoed the Governor will generally send it back to the Legislature with a Message explaining the reason for the veto or with an amendment. The Governor can also allow a Bill to become law by not signing it within ten (10) days when the Legislature is in session. Finally, the Governor has the option to strategically use the Pocket Veto to reject a Bill when the Legislature has adjourned for the year and the Governor has not formally vetoed the Bill within a ten-day period.

So, what's next?

Veto Override

A Bill vetoed by the Governor is returned to the Legislature with a Message stating the Governor's objections to it. The Legislature has the opportunity to override this veto and reenact the Bill into law. A two thirds vote of each branch is required to override a gubernatorial veto.

Source: http://www.mass.gov/…/edu-mate…/legislativeprocessinmass.pdf

Thank you, as always, for your continued help and support! Together, we can make a difference!

www.mass.gov

MASS.GOV

Michelle TreselerFollow

Co-founder of MA Lyme Coalition, Public Health Advocate, Fulbright recipient, Qigong teacher

Jul 65 min read

Open Letter to Governor Baker

The Life-saving Lyme Disease amendment is on your desk

Copyright Paul Treseler Photography

Dear Governor Baker,

Thirteen-year-old Kylie is in a wheelchair, unable to walk and struggling for her life. Her family has spent their life savings for Kylie’s care, and are forced to hold fundraisers to afford her medication. Similar situations are facing hundreds, if not thousands, of individuals and families across Massachusetts who are affected by Lyme disease, many of whom are suffering not only physically, but also struggling financially due to insurance denial of care.

Some insurers are using outdated guidelines that are not in compliance and have been removed from the National Guidelines Clearinghouse to deny physician-prescribed medical care. We have advocated for legislation to protect patients and to ensure that medically-licensed doctors, not insurers, determine Lyme disease treatment. An Act Relative to Lyme Disease Treatment Coverage has been added as a measure to the 2017 budget, and we ask that you support the measure and support Massachusetts.

Massachusetts is 2nd in the nation for confirmed Lyme disease cases. Over 5,300 people were diagnosed with Lyme disease in Massachusetts in 2014. The Centers for Disease Control states that estimate now may need to be multiplied by a factor of 10 due to under-reporting — so, make that an estimated 53,000 new cases in Massachusetts in 2014 alone. Yet, we lack a comprehensive strategy to address this burgeoning public health crisis. As this is a statewide epidemic and you represent all of us, we turn to you to respectfully request your assistance. Massachusetts needs to respond.

One of the first necessary and recommended steps, according to the Governor-appointed 2013 Massachusetts Special Commission to Conduct an Investigation and Study of the Incidence and Impact of Lyme Disease is for “mandatory Lyme disease insurance coverage to be enacted in Massachusetts.”

The facts are overwhelmingly in favor of passing this bill as part of the budget:

• Massachusetts is 2nd in the nation in confirmed Lyme disease cases. (2014, CDC)

• Lyme disease is endemic in Massachusetts.

• According to CDC data, there were 5,304 new reported cases of Lyme disease in Massachusetts in 2014. The Massachusetts Department of Public Health and the CDC state that Lyme disease is vastly under reported and that Massachusetts may have seen more than 53,000 new cases of Lyme disease in 2014 alone. (2014, CDC)

• 70% of the legislature signed on as co-sponsors of An Act Relative to Lyme Disease Treatment Coverage.

• The 2013 Massachusetts Special Commission Report found this bill to be the “next necessary and recommended step.”

• An Act Relative to Lyme Disease Treatment Coverage builds on the Massachusetts Physician Protection Act (2011).

• The 2014 Centers for Health and Information Analysis report found that the bill, if passed, would result in little to no ($0.00) impact on insurance premiums.

Massachusetts supports the Lyme disease treatment coverage measure. We have been involved in extensive social media outreach, galvanizing thousands of Massachusetts residents to voice their support of this legislation on Beacon Hill. The “Faces of Lyme” Twitter campaign, where constituents sent us their photos to tweet to their legislators, has helped put faces to this potentially life-saving bill. On October 20th, an estimated 200 people packed the Gardner Auditorium in support of this measure. For seven hours, people testified in support of this bill and countless more who were too ill to attend in person sent in their testimony in an effort to share their experiences of Lyme disease a debilitating disease, and how gaping holes in insurance coverage are placing people’s lives on the line.

The people of Massachusetts have been waiting for far too long to gain access to their potentially life-saving medications. The people of Massachusetts want to return to work, to learn at school, and to being productive members of society. The people of Massachusetts should not have to fight two battles at once: one for their lives and the other for access to life-saving medication.

Importantly, the Massachusetts Center for Health and Insurance Analysis report states the cost of this bill would result in little-to-no impact on insurance premiums. Thus, the economic impact of this legislation is negligible to insurance-holders, possibly even 0.00 dollars. This bill does not present any significant cost to Massachusetts, employers, or insurance-holders. If people have access to the treatment that they need, then it will cut down on lost productivity, absentee-ism, disability and high turnover. This Lyme disease treatment coverage measure is a win-win. More wages mean more revenue for the Commonwealth and, if people are able to receive the care that they need, then there will be less cost due to disability as people are able to return to work.

Rhode Island passed a similar bill over a decade ago and, despite insurers’ dire predictions and scare tactics, the sky did not fall, the insurers did not go bankrupt, businesses did not get hurt. The only discernible outcome is that sick people were able to afford the care that they need and Rhode Islanders were able to return to work.

With 140 co-sponsors, this potentially life-saving legislation not only reflects the will of the people, but also the support of the legislature. Unions and associations supporting this measure include the Massachusetts Organization of Scientists and Engineers (MOSES), the Massachusetts Association of Land Surveyors and Civil Engineers (MALSCE), the American Council of Engineering Companies of Massachusetts (ACEC), and the Boston Society of Civil Engineers Section (BSCES)which collectively represent thousands of scientists, engineers, and land surveyors, many of whom see the effects of Lyme disease first-hand.

People desperately need your help to afford their physician-prescribed care so they can return to their productive lives. We receive about 40 phone calls a week with people who are desperately searching for a way to afford care — selling their homes or cars — and some have to close their small businesses or go on disability because they are too sick to work and can’t afford their life-saving medication. We need your help to ensure that people access the medications they need to get well. Massachusetts needs you.

We look forward to hearing from you regarding this very important issue.

Respectfully,

The Massachusetts Lyme Coalition

Michelle Treseler, co-founder

Trish McCleary, co-founder

Lyme DiseaseHealthHealth PolicyMassachusettsPolitics

Michelle Treseler

Co-founder of MA Lyme Coalition, Public Health Advocate, Fulbright recipient, Qigong teacher

Link Here- https://medium.com/@michelle.treseler/open-letter-to-governor-baker-2c4500a971ea#.2j19rg4aw

Governor Baker- Changed the bill.... an unexpected action by the advocates... making it not only useless, but dangerous.

ATTACHMENT J

July 8, 2016

To the Honorable Senate and House of Representatives:

Pursuant to Article LVI, as amended by Article XC, Section 3 of the Amendments to the Constitution, I am returning to you for amendment Sections 108, 111, 113 and 115 of House Bill No. 4450, “An Act Making Appropriations for the Fiscal Year 2017 for the Maintenance of the Departments, Boards, Commissions, Institutions and Certain Activities of the Commonwealth, for Interest, Sinking Fund and Serial Bond Requirements and for Certain Permanent Improvements.”

Sections 108, 111, 113, and 115 require private health insurance companies, non-profit hospital service corporations, medical service corporations, and health maintenance organizations to cover long-term antibiotic therapies when deemed medically necessary by a physician, and experimental drugs for off-label uses for the treatment of Lyme Disease. Section 200 proposes to sunset this requirement on July 1, 2021.

While I support comprehensive coverage and access to Lyme Disease treatment, long-term antibiotic therapy is not clinically recognized as an appropriate form of treatment. Further, requiring coverage of experimental drugs for off-label use sets a concerning precedent. Finally, given the cost implications of this requirement, the commonwealth, employers, and insurers need time to assess and prepare for the fiscal impact of this proposal. For this reason, I am also amending section 201 to have these sections, as amended, take effect on January 1, 2017.

For these reasons, I recommend that Section 108 be amended by striking out the text and inserting in place thereof the following text:-

SECTION 108. Chapter 175 of the General Laws is hereby amended by inserting after section 47GG the following section:-

Section 47HH. (a) For the purposes of this section, “Long-term antibiotic therapy” and “Lyme disease” shall have the same meaning as ascribed to them in section 12DD of chapter 112.

(b) A policy, contract, agreement, plan or certificate of insurance issued, delivered or renewed within the commonwealth that provides medical expense coverage shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a board certified rheumatologist, infectious disease specialist or neurologist after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment;

and that Section 111 be amended by striking out the text and inserting in place thereof the following text:

SECTION 111. Chapter 176A of the General Laws is hereby amended by inserting after section 8II the following section:-

Section 8JJ. (a) For the purposes of this section, “Long-term antibiotic therapy” and “Lyme disease” shall have the same meaning as ascribed to them in section 12DD of chapter 112.

(b) A contract between a subscriber and the corporation under an individual or group hospital service plan that is delivered, issued or renewed within the commonwealth shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a board certified rheumatologist, infectious disease specialist or neurologist after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment;

and that Section 113 be amended by striking out the text and inserting in place thereof the following text:

SECTION 113. Chapter 176B of the General Laws is hereby amended by inserting after section 4II the following section:-

Section 4JJ. (a) For the purposes of this section, “Long-term antibiotic therapy” and “Lyme disease” shall have the same meaning as ascribed to them in section 12DD of chapter 112.

(b) A subscription certificate under an individual or group medical service agreement delivered, issued or renewed within the commonwealth shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a board certified rheumatologist, infectious disease specialist or neurologist after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment;

and that Section 115 be amended by striking out the text and inserting in place thereof the following text:

SECTION 115. Chapter 176G of the General Laws is hereby amended by inserting after section 4AA the following section:-

Section 4BB. (a) For the purposes of this section, “Long-term antibiotic therapy” and “Lyme disease” shall have the same meaning as ascribed to them in section 12DD of chapter 112.

(b) An individual or group health maintenance contract shall provide coverage for long-term antibiotic therapy for a patient with Lyme disease when determined to be medically necessary and ordered by a board certified rheumatologist, infectious disease specialist or neurologist after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment.

Respectfully submitted,

(Governor of MA- Baker)

Link to find attachment-

http://www.mass.gov/anf/budget-taxes-and-procurement/state-budget/fy17-budget-info/governors-fy17-vetoes/

Link to article below... http://m.telegram.com/news/20160712/mass-governor-narrows-mandate-on-lyme-disease-treatment

Mass. governor narrows mandate on Lyme disease treatment

COMMENT

MA_Worcester_TG

Massachusetts Gov. Charlie Baker. T&G File Photo

By Susan Spencer

Telegram & Gazette Staff

Posted Jul. 12, 2016 at 6:52 PM

Updated at 10:44 AM

Gov. Charles D. Baker Jr. dampened hopes for mandating broad-based insurance coverage of extended antibiotic treatment for Lyme disease Friday when he sent back changes to a fiscal 2017 budget amendment. But he allowed a narrower scope of coverage for the controversial treatment when it is prescribed by certain medical specialists.

Amendments attached to the state budget by state Rep. David P. Linsky, D-Natick, and state Sen. Anne M. Gobi, D-Spencer, would have required insurers to cover long-term antibiotic therapies when deemed medically necessary by a physician and experimental drugs for "off-label" uses for the treatment of Lyme disease.

Off-label drug use means that a drug is used for a purpose that the U.S. Food and Drug Administration has not approved.

The governor's action, which only mandates coverage for long-term antibiotic therapy when it is prescribed by a board-certified rheumatologist, infectious disease specialist or neurologist, brought criticism from Lyme disease sufferers who say that people who experience debilitating chronic symptoms are denied access to care.

Health insurers and small business representatives objected to any mandates, which they say make health coverage more expensive.

And physicians disagreed with limitations on specialists who could prescribe covered treatment, but supported the governor's rejection of mandated coverage for experimental therapies.

"Obviously, I wasn't happy," Ms. Gobi said about the changes. "Lyme disease is a problem for a lot of people and it's not getting better."

She said the requirement that patients see a medical specialist for covered treatment would increase costs and present more roadblocks.

Lyme disease is the most prevalent tick-borne disease in the country, found most commonly in the Northeast and upper Midwest. It is caused by bacteria that are spread to humans through the bite of tiny, infected ticks, including deer ticks. Lyme disease can cause serious joint, heart or central nervous system problems if it is not recognized early and treated appropriately.

According to the U.S. Centers for Disease Control and Prevention, in 2014 in Massachusetts there were 3,646 confirmed cases of Lyme disease and an additional 1,658 suspected cases. Worcester County reported 604 cases.

A 2014 report by the state Center for Health Information and Analysis summarized that the majority of Lyme disease patients are successfully treated with a single or double course of antibiotic treatment, but an estimated 10 to 20 percent of patients have symptoms that last months or years, including fatigue, sleep disturbances, muscle and joint pain and cognitive deficits.

Medical experts disagree about the effectiveness of long-term antibiotic use for chronic Lyme disease. According to the CHIA report, the CDC, National Institute of Allergy and Infectious Diseases, and Infectious Diseases Society of America hold that reported successes of long-term antibiotic use are more likely the result of the placebo effect, and rare but serious complications can result from such use.

However, the International Lyme and Associated Diseases Society's guidelines state that "the management of chronic Lyme disease must be individualized, since patients will vary according to severity of presentation and response to previous treatment."

The CHIA analysis estimated the insurance mandate for long-term antibiotic treatment would add up to 11 cents to the typical member's monthly health insurance premiums.

Ms. Gobi said that it would have been easier if the governor had simply vetoed the amendment, which the Legislature could then vote to overturn.

Instead, the House will have to reject the governor's amendment and then vote to approve the original language, which would then go to the Senate for action. If the Senate approves the original language, the governor would have 10 days to act on it, which would run beyond the Legislature's formal session ending July 31.

The Massachusetts Medical Society had mixed concerns about the initial mandate, given the conflicting evidence for treatment, and changes made in the governor's amendments. While the medical society supported narrowing the mandate by removing reference to experimental and off-label drugs, it opposed limiting the mandate to treatment by certain specialists.

"We believe that any licensed, qualified physician, including those in primary care, should be able to treat Lyme disease without inconsistent coverage for their patients," Dr. James S. Gessner, Massachusetts Medical Society president, wrote in a statement.

Business and health insurance representatives said the governor's amendments didn't go far enough and would add to the financial burden of small businesses and taxpayers.

William B. Vernon, state director for the National Federation of Independent Business, said the insurance mandate would fall disproportionately on small businesses and state and municipal employees, who are fully insured by health plans regulated under state insurance laws. He said 60 percent of workers in Massachusetts, mainly those in large corporations, are not covered by such mandates because their insurance falls under federal laws.

"This is a controversial treatment," Mr. Vernon said, adding that the mandate would increase costs. "All these mandates are small, but 40 or 50 of them - they add up."

"Health plans do provide coverage for Lyme disease," said Eric Linzer, spokesman for the Massachusetts Association of Health Plans, which opposes the mandate. "There is no scientific basis for it."

Mr. Linzer said mandated benefit laws make it harder for people to find affordable health care coverage.

Trish McCleary of Sturbridge, co-founder of the Massachusetts Lyme Coalition and Sturbridge Lyme Awareness of Massachusetts, questioned in a statement whether Mr. Baker, "who was once an insurance industry CEO, will allow insurance companies to dictate and define our access to affordable and necessary treatment here in Massachusetts despite years of public outcry."

She continued: "The thought of amending a bill to the point where it no longer serves those it is intended to serve is irresponsible, to say the least."

July 13, 2016

11 hours ago

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Trish McCleary

Rank 0

Absurd this man elected to be Governor has allowed an insdustry to guide his path in making decisions for people who continue to battle this epidemic and who have taken every possible step ask MA Legislature for help. One would hope a Governor would include ALL stakeholders in such a decision, instead he accepted the word of people who don't even acknowledge Chronic Lyme exists and he added a price tag to a piece of legislation! Governor Baker is showing exactly who and what he stands for and clearly his interestes are not with the people of Massachusetts or the majority of legislators who mindfully put together a strong bill that would cost the state $0.« less

http://m.telegram.com/news/20160712/mass-governor-narrows-mandate-on-lyme-disease-treatment#loadComment



Mass. Lawmakers Override Veto On Long-Term Antibiotics For Lyme

This segment aired on August 1, 2016.

Article here

http://www.wbur.org/commonhealth/2016/08/01/mass-long-term-lyme-disease-antibiotics

Link Here

https://vineyardgazette.com/news/2016/08/11/insurance-coverage-lyme-treatment-becomes-law

Chairman David Linsky's Report- 2011

https://www.svtweb.org/sites/default/files/LymeDiseaseinMassachusettsAPublicHealthCrisis.pdf