Chronic Lyme Disease Battle Over Coverage in Massachusetts

Chronic Lyme Disease Battle Over Coverage in Massachusetts

For those who missed the news, Massachusetts lawmakers voted this year to require insurers to cover long-term antibiotic treatment of Lyme disease in spite of a governor’s veto and doctor objection.

The hero of this story are activists Trisha McCleary,  and Michelle Tressler, co-founders of Sturbridge Lyme Awareness of Massachusetts (S.L.A.M) pictured above left to right are Treseler and McCleary, testifying in front of Massachusetts Legislature.

Michelle experienced full-blown Lyme – ironically in the midst of doing her Fulbright research on chronic disease prevention. She spent the next three years mostly bedridden, while experiencing unremitting fever, heart palpitations, peripheral neuropathy and muscle tremors. Going through her own insurance hurdles convinced her to fight on behalf of those who were too sick to fight for themselves.

Trish had also suffered with Lyme disease – so badly that Brian, her husband and S.L.A.M. another co-founder of SLAM, literally carried her into and out of hospitals, as numerous doctors sent them home. The myriad of specialists were unable to understand her symptoms and unwilling to diagnose Lyme disease in spite of left-sided facial droop (bells palsy), inability to speak and other classic Lyme symptoms. Lack of insurance coverage meant she had to stop treatment, only to have symptoms return.

The two joined forces after Trish, who had spent six years reaching out to hundreds of Lyme victims to encourage them to contact their legislators and tell their stories at legislative hearings.  Eventually the duo worked with State Senator Anne Gobi, D-Spencer, State Rep. David Linsky, D-Natick to co-sponsor the legislation.

“Hundreds of people came to various members of the Legislature and told us about their battle with long-term Lyme disease and how they wanted to have long-term antibiotic treatment but their health insurance wouldn’t cover it,” said the bill’s sponsor, State Rep. Linsky. “We feel that it is our duty to make sure that these people who want to have this treatment and have it prescribed by a licensed physician don’t have to go into financial ruin in order to get it.”

Thankfully, the Lyme activists in Massachusetts, driven by decades of financial hardship due to insurance companies who subscribe to the narrowly defined diagnosis of Lyme disease prescribed (and highly controversial) by the IDSA Guidelines, refused to give up

After the final vote was cast just before midnight, Ms. McCleary, who estimates she has spent more than $100,000 for treatment of the disease, said she “cried tears of joy” according to an article in the Telegram.

In my opinion, this legislation should be a model for other states and the fedaral government rather than the weak and ineffective federal law that was recently created which only discusses the problem.

Read more in interview by Lyme Nation, and/or Fact/Fiction article by LymeDisease.org.

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5 Responses to Chronic Lyme Disease Battle Over Coverage in Massachusetts

  1. Please, please come up with a cure & a preventative vaccine! I’m going on 4 years & have never been so sick in my life & I know so many with the disease, please help us!:(((

  2. Laura Henze Russell says:

    Nice piece, thank you!

  3. Sharon says:

    The only problem is that this new law doesn’t apply to patients with MA Health or Medicaid. It is stated in the law that the exception is those with state insurance meaning MA Health/Medicaid. It is a shame as I am an RN who had Blue Cross Blue Shield until April 2016 (before law was passed) who only covered 6 weeks of IV antibiotics and I became disabled and now on Tufts MA Health which is not covered by this law. I was so excited when it passed as didn’t realize state insurance meant MA Health. My lyme doctor doesn’t take my new insurance either and any lyme Doctor’s in MA won’t accept it either so I am left without treatment. I am very happy for patients with insurance this law does cover though but I am struggling with severe arthritis, POTS, Polyneuropathy etc.

    • Jenna Seaver says:

      Hi Sharon – I am so sorry this has happened to you! I suggest you contact Trisha McCleary or Michelle Tressler, co-founders of Sturbridge Lyme Awareness of Massachusetts (S.L.A.M). I am sure they plan to follow up this movement with further legislation to help people like you!

  4. Anne Magierski says:

    I pray that medical practitioners will open their eyes and their hearts to see the Lyme disease epidemic for what it is. The documentation is there…the patients are available if only you’ll talk with them. It’s time to get off your butts and help those who are so sick and need your help. No more stalling!

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