Actions, Contacts & Notes
Maryland House Members Young and Afzali- Delegate Afzali contacted me wishing to discuss a Lyme related bill she hoped to introduce in Maryland in the upcoming 2016 session. After a very long and pleasant conversation with Delegate Afzeli, as a followup to our conversation I sent her (and Delegate Young) a link to our Maryland Legislative website by email on August 8, 2015. The bill she wanted to introduce was to address three points- insurance, doctor protection and education. Karen Montgomery was working with her on this project.
I explained to Delegate Afzali (warned her) that any Lyme related bill will open the doors (especially HER doors) to vicious attacks by the DHMH, Hopkins, IDSA, Medical Societies, etc. She replied- "I know, I know, I've already heard all about it."
My opinion is if we did absolutely nothing about a bill the "other side" would eat everyone alive who is connected to it. The sad thing is the patients and our doctors will also be blasted in the process, something I am trying to avoid. We don't need to go backward.
UPDATE- Karen Montgomery has since resigned from the Senate due to having difficulty driving at night. She resigned effective the first of the year (2016). More information here and here. We will miss her. Ok, not really, but we do wish her well.
Maryland Support Group Leaders, Patient Advocates and Doctors- sent link to this website information and informed all contacts of the bill proposal and actions being taken by others, and requesting input from everyone. August 8, 2015.
Maryland Support Group Leaders and Patients- followed up on correspondence generated in August. Notified parties involved of any updates since that time. Heard nothing from any other groups, group leaders, organizations or doctors inside or outside of the state, nor any legislators. September 2015 - January 25, 2016.
Lyme Disease Education & Support Groups of Maryland- Contacted the Maryland Board of Physicians multiple times (phone tag) and finally reached the representative in the correct division. Contacted others that may be interested also. October 2015
Maryland Support Group Leaders- Discussed plans and requested input from support group leaders, patients, and doctors. October - January 2016
Lyme Disease Education & Support Groups of Maryland- Notified leaders of new bill introduced by Delegate Afzali (HB 399). It was not what we were told it would be about. Instead of insurance, doctor protection and education, it was a take-off of the re-written, watered down 2013 Virginia bill requiring doctors to "do more paperwork" (red tape) when testing Lyme patients. It will surely go over like a lead ballon with many agencies and doctors groups, as happened in Virginia. They don't want any legislators, outside organizations, or patients, etc. to "dictate" how they practice medicine.
I advised our folks of the bill, after requesting a copy of the bill wording 3 times- two times last year IF any were to be introduced, and again this year on January 28, 2016- along with a request for the hearing date after it was introduced (not published online yet due to "the blizzard"), and received no replies from Delegate Afzeli.
A week after HB 399 was published online we still have not heard a peep from Delegate Afzali's office, nor anyone supporting the bill. January 29, 2016.
Maryland Legislature- Notice of the hearing date for the bill (first reading) was published the day before the hearing on the Legislative website. This was too late to act and was, in my opinion, intentionally hidden from Maryland Support Group leaders, doctors and patients by Delegate Afzali and those pushing the bill. We also never received any reply following our request for the bill wording or in response to our request to be notified of a hearing (first reading) date. January 29, 2016
Lyme Disease Education & Support Groups of Maryland- Wrote detailed letter (rough draft) to Delegate Hammen and the Committee members outlining our position. Sent it off for review, editing and suggestions. Revised some language, added hyperlinks for documentation and sent it for review again. January 26- February 1, 2016.
Lyme Disease Education & Support Groups of Maryland- Worked on non-Lyme related Maryland State bill position paper at request of Lyme patient. January 28, 2016- Feb 1, 2016.
Lyme Disease Education & Support Groups of Maryland- Posted information about the bill's introduction with links to the wording publicly. January 31, 2016
Lyme Disease Education & Support Groups of Maryland- Update this website and posted a Fact Sheet concerning HB 399 here also. January 31, 2016
Lyme Disease Education & Support Groups of Maryland- Final copy of HB 399 position paper sent to Delegate Hammen and Committee members. Sent a progress report to group leaders, patients and doctors in the State concerning actions taken. Date-
Lucy Barnes
Delegates Afzali and Young
Only person I knew at first mtg they had was Jaller. Another doc was there and I think his name was Fishman. Did not know any of the advocates – I think one was from VA and one was from PA but not sure. There were other people also.
I gave the lady who had asked me to go with her a copy of the actual CT bill bc Maggie said they had worked hard on it and it was ok’d by Pat Smith and Lyme groups and told them that the wording would have to be EXACTLY the same.
I don’t know what anyone else gave them. I don’t think anything.
At a different time a couple days later my doc friend gave them a presentation (at my request so they wouldn’t get it elsewhere) about the poor state of blood tests and crappy diagnostics and poor treatment options. There was some other doctor at that one that we didn’t know and I think he was from the insurance co. There were a couple of other ladies? Fm where?. For the part I was there for no one said much except my doc friend. I told my story of JHU screwing me over.
I have3 no idea what the plan is from now. What I told you is that I had no prior or further contact other than being asked a couple weeks ago who the Lyme people/groups are that they should reach out to so that this can be done right. I said I didn’t really know but I could ask someone. So I asked Maggie bc I couldn’t ask you.
At this point, I guess I’ll tell them that, other than Pat Smith, I don’t know and they can ask some other advocates.
I quit.