LEGISLATIVE UPDATE AND CALL TO ACTION!!! AN IMPORTANT MESSAGE FROM JULIA WAGNER, Chair, Lyme Action PA

 

Thank you to all that attended the June 22 Senate Public Hearing on SB#1199. The hearing had significant impact and got this issue on the table effectively — YOU DID IT! The PA Legislature is on break and returns in September. In the meantime: Senater Greenleaf has followed up with the committee, gotten a positive response, and there are some activities happening over the summer to keep moving this forward. And, in the meantime, Massachussets successfully passed their Lyme bill (doctor’s protection)!! 

There are exactly 3 weeks in Session – 9/20, 9/27 and 10/12 – for this bill to move since this is an election year. There is a chance we’ll get somewhere, but this will require everything to happen very quickly and smoothly — WE NEED YOU TO CONTACT YOUR SENATORS — AND IF YOU HEAR “THERE IS NO BUDGET” – TELL THEM MANY ASPECTS OF THE BILL DO NOT REQUIRE BUDGET, AND THEY CAN PASS IT PENDING FUNDING. Most importantly, we have also been working with

Rep. Merle Phillips who successfully got the House Bill HB#894 through appropriations committee in June, the day after our hearing! The house bill WILL be up for a VOTE immediately in September. This bill has passed 3 times before, only to get passed over to the Senate where it went nowhere. So — this time, if it passes, the Senate committee is in a very different place — they have considered SB#1199 and heard from YOU! CONTACT YOUR REPRESENTATIVE TO VOTE YES!! We have two shots at this – through the Senate and the House – put the pressure on! If you have not already done so, sign up at http://www.lymeactionpa.com to the mailing list for more updates, and to sign the on-line petition – we want 1,000+! NOT GOING AWAY!

And, if you didn’t get to the hearing, you can see it via video link in full at http://www.lymeactionpa.com or http://www.senatordonwhite.com/ – scroll down to the June 22 hearing link.

Keep up the momentum – keep calling… and send them articles, your stories. They need to know this is NOT GOING AWAY!

Thank you – Julia Wagner, Chair, LymeActionPA, http://www.lymeactionpa.com

 

Link to floor discussion behind CT bill‏

http://www.lymerights.org/html/ct_lyme_bill_6200.html

Chronic Lyme patients win reprieve-Minneapolis

Recent legislation pending in Minnesota (another “hot-spot” for Lyme) has yielded a Medical Board agreement in the interest of allowing time for science to resolve the Lyme issue. The Minnesota Board of Medical Practice (MBMP) voluntarily will take a five-year moratorium on the investigation, disciplining or issuance of corrective action of physicians based solely on long-term prescription or administration of antibiotic therapy for chronic Lyme disease.

Chronic Lyme patients win reprieve

Physicians should not fear reprisal for prescribing long-term antibiotics

by Debra Neutkens

Staff Writer

Published:

Tuesday, March 16, 2010

MINNEAPOLIS — It was a bitter pill to swallow, but members of the Minnesota Medical Practice Board agreed to look the other way when it comes to disciplining physicians who treat chronic Lyme disease with long-term antibiotics.

The resolution circumvents legislation that would protect physicians who prescribe long courses of antibiotics for persistent Lyme patients. At a House committee hearing Feb. 17, a bill by Rep. John Ward (DFL-District 12A) was laid aside to give the state board a chance to find a non-legislative solution to the treatment issue.

The compromise barely passed by a 8-6 vote at the board’s monthly meeting March 13. It basically reads that in the interest of allowing time for science to resolve the issue, the Minnesota Board of Medical Practice (MBMP) voluntarily will take a five-year moratorium on the investigation, disciplining or issuance of corrective action based solely on long-term prescription or administration of antibiotic therapy for chronic Lyme disease.

If during those five years, double-blind, peer-reviewed scientific studies have resolved the issues, the five-year moratorium will be nullified. At the end of five years, in the absence of such scientific studies, the board will reexamine the issue.

It was not an easy decision.

Members fear the action erodes their authority to protect a patient’s health and safety and sets a dangerous precedent.

Former board president Dr. Rebecca Hafner-Fogerty told her medical constituents that passing the resolution was not good public policy. “The Legislature has no particular expertise in the practice of medicine, one of the reasons the MBMP exists, and legislating a standard of care based on who screams the loudest is an abdication of our responsibility,” she said. “The board is not on a witch hunt looking to persecute doctors treating for Lyme disease.”

Fogerty said she also worries the compromise will “trigger a flood” of copycat legislation adopted by more special interest groups. Instead she urged the board to educate those irrationally fearful as to board processes.

On hand to answer questions, Rep. Ward told the medical board that Lyme disease sufferers are “real people with real disease.” He warned them both the House bill and Senate bill would pass the Legislature, if the board did not compromise, making the treatment issue a state statute.

“Doctors should be allowed to prescribe a mode of treatment best suited for the individual,” Ward said. “This bill provides a choice.”

Board member Dr. Alfred Anderson said he could not remember the state board regulating any other disease. “We’re interested in doctors who are way off base in treating patients,” he said. “This board has never cited a doctor for treating Lyme disease specifically. I don’t see that this board has ever been an obstacle.”

Dr. Linda VanEtta, a Duluth doctor, past board member and infectious diseases fellow, said she was opposed to long-term antibiotic therapy for treating chronic Lyme and felt evidence did not support the treatment. She preferred, however, that the board enter into the agreement than see a state statute requiring the board to refrain from disciplinary action. “It is not good to have the Legislature practice medicine without a license.”

VanEtta noted that tickborne diseases are endemic in her area and she treats hundreds of patients. Yet the practitioner said she was comfortable with the current 2006 Infectious Diseases Society of America (ISDA) guidelines. Those guidelines state there is no evidence long-term antibiotics cure chronic Lyme. VanEtta said extended antibiotic therapy is not beneficial and there is risk of side effects.

She advised the board to allow the resolution to sunset in five years and “disappear.”

“You will never resolve this,” VanEtta added.

Lyme disease advocate Dr. Betty Maloney, a Wyoming family practice physician, told the group she gets three calls per week from doctors inquiring about treatment. “Doctors want latitude,” she said. “There is a real fear they will lose their license (for prescribing long-term antibiotics). This is a misperception only the board can correct. A moratorium lets us step back, calm us down, and look at the science.”

The IDSA guidelines, Maloney added, following VanEtta, are based on panel opinion and the panel is stacked against physicians who treat persistent Lyme disease. “The evidence we have is insufficient to support (IDSA) recommendations regarding late neurologic Lyme,” she said. “Science and medicine should not be ruled by majority vote.”

Debra Neutkens can be reached at reporter@presspubs.com

April 4th,’Under Our Skin’ Screening in PA!!

I’m so excited!! Come April 4th I will be speaking at a Under Our Skin Screening about my story with Lyme. This will be held in Lansdale, PA at ‘Trinity Evangelical Lutheran Church’ at 10:30am-1:30pm. Address to get there is: 1000 West Main Street, Lansdale Pa, 19446.

For the trailer of the movie go to www.underourskin.com

A dramatic tale of microbes, medicine & money, this eye-opening film investigates the untold story of Lyme disease, an emerging epidemic larger than AIDS. Each year thousands go undiagnosed or misdiagnosed, told that their symptoms are “all in their head.” Following the stories of patients and physicians as they battle for their lives and livelihoods, the film brings into focus a haunting picture of our health care system and its inability to cope with a silent terror under our skin.