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.