Letter to House Committee HB 399
The Honorable Peter A. Hammen, Chairman
Honorable Members- House Health & Government Operations Committee
January 29, 2016
OPPOSE – House Bill 399 Lyme Disease - Laboratory Test - Required Notice
Dear Honorable Peter A. Hammen and Committee Members,
Having educated and assisted residents of this State for the past several decades with their Lyme and tick borne disease issues, we once again approach your Committee to share our views on what is apparently becoming a regular occurrence at this point, the introduction of another Lyme disease related bill.
In August 2015 I was contacted by HB 399’s sponsor, Delegate Afzali. We had a delightful conversation. I found her to be very lovely and most sincere in her desire to help Lyme patients. We discussed several ideas she was considering for a bill she hoped to introduce this session. I thanked her for caring about us, asked at that time no bills be introduced, provided her with multiple resources clarifying our position, invited her to contact me at anytime with any concerns and advised her that we sincerely felt we needed to educate not legislate.
After hearing nothing further about any bills we learned HB 399 had been introduced. It’s based on a 2013 Virginia bill (H 1933) and only after an extensive heated public debate it passed (H 56/40, S 30/10) in an altered, generic form before reaching former Governor Bob McDonnell’s desk for his signature.
In the meantime, I had consulted with Lyme disease support groups and patients concerning my original conversation with Delegate Afzali and subsequently contacted a Maryland Board of Physicians representative. Since then I have been working on a much needed alternate plan, one that, unlike the proposed Lyme related bills, will hopefully be very effective and also satisfactory to all parties.
The plan is based on a policy statement once in effect in our State for many years that was originally proposed by our groups then implemented and honored by the Board of Physicians (under Irving Pinder’s leadership), the Maryland Task Force on Lyme Disease and the Maryland DHMH. Mr. Pinder retired about the same time a former persistent legislative proponent of Lyme bills along with a handful of Lyme disease bill supporters (currently behind HB 399) demanded the Board of Physicians “do something” about Lyme disease.
Unfortunately, they did. The previously successful policy was totally eliminated and as a result a number of Maryland health care professionals (at least 10) were brought up on charges related directly to Lyme disease diagnosis and treatment. This situation has been devastating, life-altering and extremely expensive for all involved, but it’s been unstoppable due to that policy change.
Chairman Hammen, as you know we are in desperate need of properly trained doctors to treat the growing number of chronically ill and disabled Lyme and tick borne disease patients. Alienating health care providers now by passing a non-essential bill that forces them against their will to treat Lyme patients and tests differently than all other patients and any other type of medical tests, and adding yet another set of regulations (red tape) to their load, is just not the way to proceed. Our focus should be on helping our doctors, not hindering them.
Insurance coverage, flexible treatment guidelines and doctor education are major concerns, not the implementation of an ineffective law that failed to accomplish its goals in Virginia where it originated. After monitoring the Virginia situation for the past three years only one person we questioned was provided the written notice as required in a State where approximately 3,000 new cases have since been reported and 30,000 more people were infected (CDC data). Doctors are angry about the bill, will not comply and no one is required to enforce this law.
From its inception, numerous medical societies strongly opposed the VA bill. It was assaulted with amendments, substitutions and bad publicity. Since its enactment doctors treating Virginia patients have been retaliated against (more Lyme related medical board charges). VA Bill H 1933 actually ended up hurting our situation, especially our doctors, as we predict HB 399 in Maryland will do.
I respectfully request you and your Committee consider our sincere attempts at achieving a cooperative agreement with our Board of Physicians as a work in progress and in lieu of a bill. We also ask that you review the OPPOSE HB 399 Fact Sheet (attached), and as a result oppose HB 399 and any additional superficial Lyme related bills that may be introduced this year.
Thank you Chairman Hammen, and your Committee members and staff so very much for your consideration today and for all you have done to help us with the Lyme disease situation over the years. We are grateful for your support, always.
Stay warm this winter, have a gentle session, and don’t forget, do a tick check!
Sincerely,
Lucy Barnes
Lucy Barnes, Director
Lyme Disease Education and Support Groups of Maryland
631 Railroad Avenue
Centreville, MD 21617
OPPOSE HB 399
Lyme Disease- Laboratory Tests- Written Notice
Existing tests from commercial labs already bear disclaimer warnings stating results may yield false negatives, requiring additional testing.
HB 399 speaks to unspecified Lyme tests when a variety of Lyme tests are currently on the market and more are to be released in the near future, while additional tests are still in the development process.
The bill fails to address monitoring issues, a plan to notify health care professionals, a sunset clause and the proper oversight to be effective.
A Maryland bill with similar intent (SB 891) was introduced in 2012 by the same supporters pushing HB 399, was OPPOSED by Med-Chi, was reported UNFAVORABLE and never advanced out of the 1st Committee.
Physicians have rightfully complained that medical knowledge changes quickly and HB 399 will prevent them from moving forward as testing improves. Examples of improved tests since 2013- Advanced Lab, IGeneX
Informing the public that Lyme tests are not accurate has always been a top priority for all of us for 20+ years and has been publicly reported by the Centers for Disease Control, the IDSA, University of Maryland, local news articles and all of our Support Groups across the State and nation.
For many years, Lyme disease related bills have, without exception, been altered as they moved through the legislative process with a result that has been undesirable and/or detrimental to the public, Lyme patients and doctors who treat them.
The promoters of this bill have a history of bouncing from state to state attempting to get questionable Lyme bills passed: 2010-HB 2 requiring mandatory reporting when it already exists; 2010- HB 290- Lyme doctor protection bill opposed by Lyme doctors; 2010- HB 798- 2nd task force after the previous task force recently released its final report; 2012- HB 1168- declare May Lyme awareness month when it had been for 20 plus years; 2012- SB 891 Lyme testing bill; 2016- HB 399- another Lyme test bill. Virginia bills in 2010- HB 36 requiring mandatory reporting when it already exists and HB 512, HB 897, HB 1017, HB 1288 again, requiring mandatory reporting when it exists; 2013- HB 1933- Lyme testing bill.
There are many pressing issues to pursue regarding Lyme disease. At this time we prefer to educate doctors, not legislate them. Thank you.
Lucy Barnes, Director