MA Protects Physicians Who Treat Lyme

Massachusetts Lyme disease advocates pose with Governor Deval Patrick in his office following his signing of the FY2011 budget, which included legislation which will protect physicians who treat Lyme disease longer than 30 days.  From left to right to right: Robin Lemieux of Groton; Susan Fairbank-Pitzer of Danvers; neurologist Luz Jacqueline Ruiz, M.D., of Harvard, MA; Donna Castle of Groton; Governor Duval Patrick; Representative Robert Hargraves (R-Groton); clinical psychologist Sheila Statlender, PhD, of Newton; and Jayme Kulesz of Groton.
 

Last Fall, I testified at the Massachusetts State House. I was there to support legislation which would protect physicians who treat patients with Lyme Disease. There has been a chill in doctor's offices across this state. It is a traumatic challenge when you are unlucky enough to end up with a case of Lyme which leads to persistent, debilitating health problems and discover that you can't find a doctor in your state who is willing to help you. They are unwilling to help either because they have been grossly misinformed or they are afraid of being punished by the state health board and shunned by their peers.

It was a long, uphill battle, but dedicated advocates trudged on year after year and we finally have a first step in the legal process which will potentially give patients a chance to find a treating physician. Here is the press release from the Lyme Disease Legislation Action Group:

For Immediate Release:

Jayme Kulesz , Lyme Disease Legislation Action Group

978 448-2696 (h)

978 273-0037 (c)

jkulesz@charter.net

Lyme Disease Legislation for Physician Protection signed by Governor Patrick

Massachusetts Governor Deval Patrick signed Lyme disease legislation into law as outside section 67 of the FY 2011 budget, effective July 1. "The intent of the law is to protect the freedom of Massachusetts doctors to treat Lyme disease comprehensively according to their best professional judgment, citing specifically the option for extended antibiotic treatment beyond 30 days," according to Brenda Boleyn, Chairperson of the Cape & Islands Lyme Disease Task Force, an advisory group appointed by the Barnstable County Commissioners.

The legislation provides the definition for Lyme disease which includes, “the presence in a patient of signs and symptoms compatible with acute infection with Borrelia burgdorferi; or with late stage or persistent or chronic infection with Borrelia burgdorferi, or with complications related to such an infection.”  In addition, the legislation provides for updating the Lyme disease definition if other strains are found to cause Lyme disease.

The legislation also legitimizes and defines the “clinical diagnosis“ of Lyme disease. This   may be based on knowledge obtained through medical history and physical examination only, or in conjunction with testing that provides supportive data for such clinical diagnosis, as determined by the treating physician.  

Governor Patrick’s signing of this important piece of legislation is the result of months of work by a core legislative action group, who worked with Representative Robert Hargraves (Groton-R) and Senate Majority Leader Fred Berry (Peabody-D) in drafting the bipartisan legislation and meeting with a number of state officials over the last year. “We are deeply grateful to Representative Hargraves and Senator Berry for taking time to meet with us and to understand the reasoning behind this law,” said clinical psychologist Sheila Statlender, Ph.D., a member of the legislative action group.

“Representative Hargraves and Senator Berry led a large team of legislators that supported this law and spent countless hours working to insure it was headed to the Governor’s desk for signature,” added Statlender. “This is an initial step towards helping the many Massachusetts residents suffering from chronic Lyme disease, and perhaps will lead to their being treated in their own communities, instead of having to travel hundreds of miles out of state for treatment.”

Representative Hargraves expressed gratitude for the outpouring of support from Lyme disease patients across the Commonwealth who sent letters to their legislators, the Governor and the Department of Public Health. “This groundswell of support from Lyme patients and their families was key to the signing of the legislation by Governor Patrick,” said Hargraves.

Following the signing of the legislation, Governor Patrick took the time to meet with members of the legislative action group and Representative Hargraves, and expressed his support.  

Massachusetts joins Connecticut, Rhode Island and California as the fourth state in the country to sign legislation that protects physicians who treat Lyme disease long term. Language of the legislation is posted on the Governor’s website.

I say "first step" because we all know that the real key to getting treatment is getting your health insurance to pay for it. Sick people, particularly when the illness is debilitating and you become unable to generate an income, can't afford to pay for the treatment on their own. We buy health insurance specifically for this reason. Even if we wanted to, the cost of some treatments is so exorbitant only the extremely wealthy could afford it. We need our insurance policy to actually insure that our health care needs are met.

Still, your doctors have to be legally protected from sanctioning first, so this is a critical, foundational first step. We must acknowledge the accomplishment here and the significance. Its has required very arduous work and our community is both small and living with illness. So, this has been no small feat. We hope the world can understand that we might need to rest and rejuvenate before setting our sights on the next huge goal: requiring that insurance companies cover treatment ordered by a licensed physician.

That work will require going head to head with the gargantuan power of the insurance industry. Not something we look forward to. For now, we will celebrate this victory and envision doctors coming out of their offices and into their reception areas to welcome all the Lyme patients who need their care.