2010 Disaster
LEGISLATION IS NOTHING TO PLAY WITH
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AN OUTCOME RESULTING IN NEW RESTRICTIVE POLICIES IN MARYLAND
The recent actions by a small group of people from the Washington DC area Lyme disease support group, who tried unsuccessfully to push bills through the Maryland General Assembly have, as predicted, severely limited if not totally destroyed our physicians ability to safely treat Lyme patients in Maryland.
Once the unacceptable bills were dead in their committees, a series of disgraceful attacks were launched on volunteer Lyme organizations, Lyme treating doctors, Lyme patient advocates and Maryland Lyme patients by these people.
Additionally, once their bills failed, the NatCap group persisted in strong-arming the Board of Physicians in an attempt to make them address doctor protection issues. These issues had been previously addressed by the Board successfully, and doctor protection had also been confirmed in writing by the Department of Health and Mental Hygiene. We needed no changes.
As a result of NatCaps actions, the Maryland Board of Physicians was compelled to create and distribute another document which, in turn, placed many new and unwanted restrictions on Maryland Lyme-treating doctors and patients.
NatCaps actions are directly responsible for changing Maryland's previous status as one of the better states in which doctors could provide appropriate treatment to patients, to possibly being the worst and most restrictive in the nation.
Maryland now has a published description (instituted by the Board of Physicians) of what Lyme is, and how it is or is not to be addressed in the future.
In Maryland:
1.) Doctors must now follow the IDSA/CDC standard of care - with no mention of chronic Lyme (in other words, chronic Lyme does not exist and post treatment Lyme syndrome doesn't warrant treatment);
2.) a warning was issued for all doctors to follow the accepted standard of care, IDSA, and refer to "professionals" before deviating from that standard;
3.) a warning was issued to adhere to accepted [IDSA] science;
4.) a warning was issued to have all patients advised in writing (in charts) if their treatment plan goes outside the accepted standard of care;
5.) a warning was issued to not extend or continue treatment if desired results are not forthcoming;
6.) and another warning was issued to not provide any treatment that could be harmful to patients (nearly all but the standard 3 week doxy/amoxy treatment is considered "harmful" by IDSA standards).
These additional restrictions have come at an exceptionally vulnerable time for our doctors and patients. The International Lyme and Associated Diseases Society (ILADS) failed to issue an updated version of their Lyme guidelines in a timely manner (within the 5 years required) and their previous guidelines have been officially withdrawn from the National Clearing House.
Update 2o14- the latest ILADS treatment guidelines have not been accepted by the National Clearing House.
Bottom line- In a state where chronic Lyme and tick borne coinfections were being addressed by educated health care professionals, we were fortunate in that we had no doctors charged for the "over diagnosis" or "over treatment" of Lyme disease. We also had a written policy in place (by DHMH and Board) to cover those issues, which was the best possible scenario considering the current political climate.
Now we must adhere to the following new rules any any consequences at a time when no treatment guidelines are in place to support or defend any type of alternative diagnostic or treatment options other than the IDSA guidelines.
At the same time the Board issued the new rules, they denied a medical license to a Lyme-treating doctor who was harshly sanctioned by the North Carolina Medical Board for treating outside the accepted standard of care. The Board clarified in more depth what they felt was not considered acceptable for physicians in our State.
We can only hope that the individuals (some listed below) who encouraged, prompted or supported the recent Maryland bills and pushed the Board of Physicians into readdressing an already workable situation that turned disastrous will immediately address this matter and work as hard to reverse the policies they helped create. As patients, we deserve to have treatment choices and doctors who are able and willing to treat as they see fit without fear of retaliation.
UPDATE 2o14- As predicted, nearly all LLMD's treating Maryland patients have been investigated and many were charged with violations since NatCap's intervention in Maryland politics. Some doctors lost their licenses as a result. Some have been sanctioned, some have been fined and all have suffered the costs associated with getting legal advise for their case. As a result hundreds of patients have been stranded without a doctor to treat them.
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From the Maryland Board of Physicians- Spring 2010 Newsletter
Secretary/Treasurer Nallan C. Ramakrishna, M.D.
Evelyn Beasley, Harold A. Rose, Habib Bhutta, M.D., Brenda G. Baker, Richard Bittner, Esq., Susan T. Strahan, M.D., Carmen M. Contee, Laurie S.Y. Tyau, M.D., Suresh K. Gupta, M.D., Rosaire Verna, M.D., Robert G. Hennessy, M.D., Douglas G. Wright, M.D.
410-764-4777 Toll Free: 1-800-492-6836
FAX: 410-358-2252 E-Mail: mbpmail@rcn.com
Web site: www.mbp.state.md.us
http://www.mbp.state.md.us/forms/spring2010.pdf
Lyme Disease
Lyme disease continues to be the most commonly reported vector-borne illness in the United States, especially along the Eastern seacoast. When it is diagnosed and treated early, treatment with antibiotics may be successful.
Early symptoms include the characteristic “erythema migrans” rash at the site of the bite, chills, fever, headache, stiff neck, tiredness, joint pains, swollen lymph nodes, and a rash spreading to other parts of the body. Without treatment, the disease may progress to arthritis, meningitis, facial nerve paralysis, or hearing abnormalities.
There is a considerable controversy about the appropriate therapy when Lyme disease is not diagnosed early or does not respond to the standard course of treatment.
Many patient advocacy groups claim that medical boards are disciplining physicians for use of non-standard treatment models, thus discouraging physicians from deviating from standard treatment protocols. The Maryland Board of Physicians has never sanctioned a physician for over-prescribing antibiotics or for treatment of patients with confirmed or suspected Lyme disease.
The Board of Physicians recommends that any physician using non-standard treatments for any patient adhere to the following principles:
1. Adequate diagnosis and an explanation of options should be provided to the patient;
2. The non-scientific method should not be used to the exclusion of scientifically proven effective methods;
3. Use of alternative therapies does not relieve a physician from the duty to refer to appropriate professionals or to keep a complete medical record;
4. If the patient rejects a scientific modality of diagnosis or treatment in favor of an unproven method, a meaningful informed consent must be completed and documented in the medical record;
5. An unproven treatment should not be pursued indefinitely in the face of failure to achieve the desired effect; and
6. The unproven method should not have the potential to harm the patient.
Adherence to these principles and documentation in the patient’s medical record should improve patient satisfaction and treatment outcomes as well as protecting the physician from a charge of failure to meet the standard of quality care.
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Quotes from individuals (affiliated with the NatCap Lyme Group) who were working on the 2010 Maryland bills or with legislators in some fashion to change our policies included:
Kevin McGee- KGMcGhee@aol.com Origin and Results of Efforts- https://sites.google.com/site/marylandlyme/political-action/natcap-lyme-group/hb-290-origins
"Actually, from what Delegate Pena-Melnyk has said, Delegate Montgomery will be introducing several [bills] about reporting requirements and I am not sure what else." [Email July 13, 09]
"Also - on Monday, I am meeting in Annapolis with Delegate Joseline Pena Melnyk at her office in Annapolis . . . she asked me to sit in on a meeting with some state medical folks about Lyme (I don't know the full scope of the meeting. I know she is helping another constituent with Lyme [Susan Green] -- since my case is well known to the local delegation, she invited me to join the meeting." [Email June 26, 09]
"Delegate Peña-Melnyk’s bill was initiated by her constituents." http://www.natcaplyme.org/index.php?module=Pagesetter&func=viewpub&tid=10&pid=7
"Testimony was given by Delegate Pena Melnyk, who did a great job educating her colleagues on the differences between ILADS and IDSA, myself, an LLMD, and 2 other Lyme sufferers. ... The most significant interchange took place with Mr. Pinder who has now formally stated (re-stated) that the Board will NOT pursue physicians in MD for making clinical diagnosis/ using long term ABX. ... I hope to have more to report on this soon - in the meantime, the consensus of the day seemed to be that if the Board of Physicians will follow through with this approach, the bill will be unnecessary." [Posted Email Feb 17, 2010]
"I will spare you the details - but I believe one of the reasons the bill was withdrawn and that we are now going to have some public and positive work done by the Board of Physicians and by the committee is due to the approach I have taken and will continue to take." [Email Feb 24, 2010]
"As I previously mentioned, the Board of Physicians made a public pledge to do outreach favorable to our cause. ... We are still working on some other steps to solidify what the board said . . . more to report on that soon." [Email Feb 24, 2010]
NatCap Lyme - Monte Skall - http://www.natcaplyme.org Maryland bill actions- "Lyme protection and education bills are being initiated by well intended patients and advocates who want a doctor protection bill modeled after the recently enacted Connecticut Lyme bill to insure health care options in their state." ... "The delegate [Peña-Melnyk] contacted NatCapLyme to ask for our support." ...
"This was also the case in Maryland with HB 290, Delegate Peña-Melnyk’s bill, which was amended twice before it was introduced. In its final form it was an acceptable version of the Connecticut bill." ...
"Clearly, the delegate [Peña-Melnyk] made a mistake by not seeking input from experienced Lyme advocacy groups in Maryland that could have helped her create an initial draft without the problems she later corrected." http://www.natcaplyme.org/index.php?module=Pagesetter&func=viewpub&tid=10&pid=7
Barbara Buckman, Exec Director ILADS- lymedocs@aol.com "I am working w/ Monte Skall of NatCapLyme on this one." [Email Feb 16, 2010]
"She [sponsor] indicated that she would kill any bill that we didn't approve of." [Email Feb 18, 2010]
"ps; Too bad LDA worked to kill the MD legislation. With the revision, it was perfect. The delegate offered to kill the bill if we didn't approve of the committee changes. We have already had one member resign over this." [Email Feb 18, 2010]
"I live in Montgomery County, MD and I have never heard of this Karen Montgomery person. Montgomery County Maryland is one of THE most liberal counties in the country with all the federal government employees, so what you are saying just doesn't make sense." [Email 8/2008]
Susan Green, Hardball attorney - "Together, myself and a local tri-state support group [NatCap], helped Delegate Pena-Malnyk fashion a bill mirroring the Conn. and N.H. Bills. ... Since Ilads would not endorse the bill, we were fearful that we would be under represented in those areas when up against Hopkins Docs." [Public post on LN]
"This [bill] is being reduced to a writing and will serve to insure that Doctors will be free to prescribe.... Delegate Pena-Melnyk has asked us to report to her should Pinder [Board of Physicians] fail to keep his promise." [Public post on LN]
"I was aware of the [previous] "agreement" with the Medical Board and I am also aware that he [Mr. Pinder] has committed to put the agreement in writing in exchange for Delegate Pena-Malnyk withdrawing the bill. That's right. Withdrawing. It was elective in reliance upon a written agreement." [Post on LN]
Dr. Jaller, LymeMD Blog (not an ILADS member)- May 20, 2008 "Two states have passed laws protecting doctors who treat chronic Lyme and their patients. These are Rhode Island and California. Physicians who treat this disease in other states do so at their professional peril. Many Lyme advocates see this as a witch hunt against Lyme physicians. Physicians who treat chronic Lyme frequently refer to themselves as Lyme literate physician, or LLMDs. They point out that hundreds of publications in well respected medical journals back up their positions with regard to the disease.
I am a physician who treats hundreds of patients with Lyme disease. AT this very time the medical board in my state is investigating my treatment of patients. I have opened this blog to vent my frustrations and to perhaps help some patients who may encounter my thoughts. I unfortunately cannot do this until specific "political" issues which relate to my own situation are resolved."
"If the politics do not change LLMDS will become a threatened species." June 11, 2008
"It turns out that the Maryland State Health Department commissioned a task force to study the issue Lyme disease and vector borne illness in the state. ... It reports that the Maryland Board of Physicians announced in newsletter in 2005 that "it does not target or restrict the treatment of LD." [June 11, 2008]
Responsible Legislators
Delegate Karen Montgomery
2007- "Fighting treatment guidelines of the type Montgomery favored [IDSA] has become one of the activists' primary goals. Those guidelines, crafted by the Infectious Diseases Society of America, a leading group of disease specialists, recommend against some treatments, such as long-term courses of antibiotics; the activists say such advice stops doctors from recognizing and treating "chronic Lyme."
2007- "But when she introduced a bill in the legislature to distribute [IDSA] long-established treatment guidelines on the tick-borne infection to doctors statewide, she ran up against another adversary: Lyme advocacy groups."
Delegate Pena-Melnyk
"All, here is the newly crafted [bill] language. It is the Virginia bill, which is essentially the CT bill with some minor changes. There is no real time to make additional changes. We want the bill to pass. We cannot let the perfect be the enemy of the good.
We already have enough of the crazies with the metal aliases (HA -- you all probably know who I'm talking about) after us. Can someone let Dan Jaller know?
We have no email for him and only an office number that is difficult to get through on. XXXX, Legislative Aide, Delegate Joseline Peña-Melnyk, (301) 858-XXXX (w), (301) 538-XXXX (CELL)" [Email- From: Joseline.Pena.Melnyk@house.state.md.us-
To: sgreen@hardballXXX ; kgmcgheeXXX; d.knieriem@verizon.net; jaybird7290XXXt; natcaplyme@natcaplyme.org; sdel@XXX- Date: Fri, 12 Feb 2010 17:41:19 -0500- Subject: FW: HB0290_with_956387_1.rtf ]