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Some insurers are using outdated guidelines that are not in compliance and have been removed from the National Guidelines Clearinghouse to deny physician-prescribed medical care.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.


The Massachusetts Lyme Coalition 
Michelle Treseler, co-founder
Trish McCleary, co-founder