Discussion under way on Vineyard about culling deer herd as one method to reduce tick-borne illness.
Timothy Johnson

Insurance Coverage for Lyme Treatment Becomes Law

<p>The state legislature has adopted a new bill requiring insurance companies to cover long-term antibiotic treatment of Lyme disease, despite considerable pushback.

The state legislature has adopted a new bill requiring insurance companies to cover long-term antibiotic treatment of Lyme disease, despite considerable pushback from the medical and health insurance communities, and from Gov. Charlie Baker, who twice remanded the bill in the final weeks before the legislative session closed in July.

In covering the long-term treatment of Lyme disease, insurance companies must now cover experimental drugs as well, including for off-label use, as long as the drugs are approved (for any indication) by the Food and Drug Administration.

Governor Baker, a former health insurance executive, vetoed the bill in late July, citing a lack of medical evidence to support the mandate, and raising concerns about the coverage of experimental drugs. But the House and Senate held fast to their original language and adopted the bill almost unanimously in the last two days of the session.

Chronic Lyme has been the subject of much debate in the medical community, with two general camps emerging in the last 10 years. One argues for the treatment of Lyme symptoms for however long they last, while the other argues that long-term antibiotic treatment is ineffective and unproven to work. The new bill, which received final approval by the House on July 31, builds on an existing law that allows doctors to prescribe long-term treatment without censure.

Along with other tick-borne diseases, Lyme is endemic to the region, with Massachusetts having among the highest rates in the country — 3,830 confirmed cases in 2014, down from 4,028 in 2009. Island towns have among the highest rates in the state, with Chilmark

topping the list. And the actual numbers could be much higher, in part because the only official diagnosis — a red bull’s-eye rash at the point of infection — often doesn’t appear, and lab tests may come back negative either way.

Rep. David Linsky of Natick, who began working on the state bill about five years ago, called its passage a victory for the state. “This is an example of the House and Senate being extremely responsive to the many requests that we got from constituents from all over Massachusetts to do something to help those individuals and families that have been suffering with Lyme disease,” he told the Gazette.

Rep. Tim Madden and Sen. Dan Wolf, who represent the Cape and Islands, were among the more than 140 lawmakers that co-sponsored the bill.

“I think it’s a story of the transformative power of ordinary citizens to assert their dignity,” said Michelle Treseler, co-founder of the Massachusetts Lyme Coalition, who helped draft the current bill and has spent years lobbying for its passage. “Their legislators passed a really monumental vote for human decency.”

The final version of the bill includes an emergency preamble that puts it into effect immediately, although it also includes a sunset clause that will cause it to expire in November 2021. A similar bill that passed in Rhode Island in 2003 had a one-year sunset clause that was later repealed.

Governor Baker had introduced alternate legislation in July that would have required long-term antibiotic coverage only when considered medically necessary and ordered by a board-certified specialist such as a rheumatologist or neurologist. That version also removed the language related to experimental drugs, and delayed the start date to January 2017 to give stakeholders time to prepare. “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,” Mr. Baker wrote at the time. “Further, requiring coverage of experimental drugs for off-label use sets a concerning precedent.”

The Massachusetts Infectious Diseases Society (MIDS) and the Massachusetts Association of Healthcare Plans (MAHP) were among the backers of the alternate bill, both pointing to a lack of clinical evidence to support the mandate as approved by the House and Senate. MIDS warned that the long-term antibiotic use “will generate more antibiotic-resistant bacteria that migrate to the general public thereby exacerbating a rapidly-growing public health crisis.”

MAHP vice president Eric Linzer drew attention to clinical evidence, cited by groups including the Centers for Disease Control and Prevention, that long-term antibiotic treatment for Lyme may come with serious complications. “Couple that with the concerns that local experts have raised about this, and it really should have given legislators a moment of pause before passing this law,” Mr. Linzer said.

State-mandated insurance benefits affect only about 40 per cent of the commercial market, he added, since larger companies can self-insure. “When we pass a mandated benefit bill, it falls — and disproportionately falls — on small and mid-sized businesses, adding to their healthcare costs,” he said.

But Ms. Treseler noted similar opposition to the bill in Rhode Island, noting those fears never played out. “Despite insurers’ objections there, the sky didn’t fall,” she said. “The only discernible outcome was that sick people were able to get their physician-prescribed treatment. And many of them get well.”

She said thousands will benefit from the new bill in Massachusetts. “Many families will no longer be in the position of deciding whether to forego medical treatment or losing their home,” she said. “And business will benefit as a result of less absenteeism and workers having to be on disability.”

Looking ahead, the Massachusetts Lyme Coalition plans to shift its focus from legislation to disease prevention, including the use of landscaping and appropriate outdoor clothing to reduce the risk of tick bites. Efforts on the Island have recently turned to a discussion about deer culling to reduce the number of ticks, since deer provide food and habitat for the breeding adults. A survey launched this week by the Gazette aims to gauge public opinion on the seriousness of the problem and possible tick reduction strategies.

Meanwhile, Mr. Linsky did not see the need for additional legislation related to chronic Lyme disease treatment in the foreseeable future. “The health insurers are required to cover these treatments,” he said. “It is really in the hands of physicians and patients, and that’s where it should be.”

https://vineyardgazette.com/sites/all/themes/mvgazette/imgs/cal-spacer-front.png

Gazette Survey


The Vineyard Gazette has launched an online survey aimed at exploring community attitudes about the seriousness of the tick problem, and testing public opinion about various remediation efforts. The survey is being done by the newspaper in cooperation with the Island boards of health and leading biologists who are studying tick diseases on the Vineyard. Go to this link to participate in the survey.
 

Comments

Submitted by Anonymous (not verified) on Thu, 08/11/2016 - 23:45

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hike no more for me skyline drive va

ive seen chipmunks up close that had ticks embedded in their eyebrow area. if you ask taxidermists that mount bear and other big and small game im sure you ll hear of ticks on them also.its just not deer that carry ticks with lymes. im waiting for the smart person to come up with the right diagnosis test for people that have had lymes for awhile and undiagnosed.the hunters are spreading the elk around now too that are carriers of cwd and ticks.the days of outside enjoyment are scary and ruined with ticks west nile zika and the other miserable life threatening problems.

Saw-whet South of Boston, Mass

Chipmunks! Hubby would let kitty outside, kitty would pick up chipmunks and try to bring them inside. Dear son and I were dx with Lyme 6 mo after b/c one of his knees got an odd swelling that totally matched CDC pictures. We never had bullseye rashes, despite continual tick checks cause we live in a tick hot zone. Now we keep the cat indoors and got the cat some indoor guinea pigs to love instead of wild chipmunks (supervised of course, and the gps do love the kitty).

Still adore the chipmunks but they are definitely tick vectors!

But I'm also not a hiker! Sedentary indoor type!!

Robert Wolfe Ohio

Squirrels too. I think back to the days my great grandmother often had a pot of squirrels soaking in salt water in the fridge, and the times she dipped her hands in the water while preparing them. Then I understand her poor old twisted up hands.

Submitted by Anonymous (not verified) on Fri, 08/12/2016 - 00:34

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Rose Fernandes Dartmouth mass

My family has been the victims of Lyme disease, bartonella, Brucella, Babissia, a Mycoplasma and cytomegalovirus... In 2007 my husband was misdiagnosed with Guillian and Barre , never properly treated and things just spiraled down for all theses years where he was slowly dying with so much pain fatigue , brain fog, numbing, pins and needles, seizures etc !!! Now my Daughter just 26 years old was diognosed. We believe she was also misdiagnosed when she was only 6 with Rosacea .. After many Doctor, hospital visits with such bad headaches back and neck pain she was also diognosed with Lyme .... But the night mare just began... now 20 years later she has over 50 lesions on her brain, neck and spinal cord that they all call MS ... Both of them are now on a pic line and we have been paying thousands out of pocket .. This is such a debelatating disease I'm so glad that now they are finally admitting how bad this epidemic is ... Thank you state legislature !!!

Submitted by Anonymous (not verified) on Fri, 08/12/2016 - 06:59

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Debra Roberts Somerdale NJ

What can I do to have NJ get involved, what can we all do so all the states are involved? This is a wide spread dibilitating disease that has no boundary.. Please help me with an answer. [email protected]

Douglas Korves AIA Edgewater, NJ

Call your local state representative and ask him to introduce a similar bill in the Legislature. Download a copy of the Mass bill as an outline for his aides to work with. Get sponsorship from both houses and parties. Then lobby, talk and work it like crazy.

Submitted by Anonymous (not verified) on Fri, 08/12/2016 - 09:26

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Maureen AZ

When r we going to get. Medicare disability to cover Lyme treatments? Because they don't ok treatment my secondary health ins. Won't cover anything either. So I pay around $500 per month for health ins. And yet it does me no good. I am now getting IV Ozone therapy which is helping a lot since I can't tolerate antibiotics any more. This disease has totally depleted every dime I had. After working 37 yrs as an RN my retirement is gone and I can barely cover basic expenses.

Submitted by Anonymous (not verified) on Fri, 08/12/2016 - 09:46

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Jean T Barbey MD Oak Bluffs and Washington DC

This is a very unfortunate decision that legitimizes charlatanism of the worst kind.
Post Lyme syndrome can indeed be a debilitating illness that needs to be addressed with compassion and the best of medical care but long terms indiscriminate antibiotics should definitely never be part of the plan. They are potentially harmful to the patient and the population as a whole...

Submitted by Anonymous (not verified) on Fri, 08/12/2016 - 17:43

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Elizabeth Mellon Edgartown

This decision has given many of us who suffer with Chronic Lyme Disease hope. Please don't call it PTLDS because it's not a syndrome and that terminology makes it seem like science has no idea what it is. Research from Northeastern now confirms the existence of persister Borellia cells so there is no more need to question the diagnosis or try to minimize the pathogen's persistence.
These spirochetes are insidious and change form, often embedding themselves into tissue such as the brain where most oral antibiotics such as doxy cannot penetrate. They also form cell walls to protect themselves, going dormant for long periods of time only to come back with a vengeance causing symptoms than can be confused with a plethora of other illnesses. Long term IV antibiotics are absolutely necessary in these cases. It's interesting how opposed to many are while our food, our meat is pumped with antibiotics and teenagers with acne can get long term prescribed doxy so easily and no one talks about that.
Those of us living with CDL have suffered and searched for doctors and spent thousands of dollars and time off of work and in bed feeling hopeless. We finally are being validated and granted the right of proper care and treatment. This is a right that all other diseases, such as cancer, are granted without question. This has been a long time coming and many of us phoned in, wrote letters, and testified at the MA State House. This is a giant leap for this community. People so sick from this can now afford the treatment through their insurance. Now physicians have to begin to learn more about diagnosis and treatment for CDL so patients like myself don't have to leave the island regularly to get proper care.

Submitted by Anonymous (not verified) on Sat, 08/13/2016 - 15:14

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Donna Pennsylvania

Come on Pennsylvania! My husband is a patient, on his fourth round of treatment. Doctor was taking Medicare, but opted out. It could very well clean out the savings. Thank God he doesn't require IV this time.... Unfortunately I haven't been able to work for the last 4 months because he couldn't be left alone! It's awful!

Submitted by Anonymous (not verified) on Tue, 09/06/2016 - 22:23

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Carlos Ted Texas

This should be a nation wide bill. The only problem is finding a doctor who will treat tick borne infections beyond the 3 weeks that IDSA and CDC deem will eradicate this infection. Except unfortunately 3 weeks will not take care of a infection that had not been discovered shortly after transmission. The current protocol does not eradicate this infection and unfortunately when you factor in different peoples immune system and different co-infections you now have a disaster. The longer we ignore this problem the more life altering will happen to thousands of people. Isn't 20 plus years and xounting long enough? If one doesn'r believe this is a chronic infection just look at persister cells and studies trying to find antibiotics to eradicate this infection. We wouldnt be still searching for a cure for a infection that can easily eradicated in 3 weeks.

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