Good Bills Go Bad

See the previously introduced (2005) Maryland Task Force bill and how it was totally gutted and made IDSA favorable and not patient or LLMD acceptable.
 Note that the words “Task Force” are not even mentioned in the final "Task Force" bill after the Senate Health Committee got a hold of it and changed it.



Below are some of the changes made during this same bills process when going through the legislative review steps.

It shows how a Lyme-related Task Force bill, or ANY bill can quickly be changed from patient friendly to IDSA friendly (and we have NO control over it and neither does the sponsor): 

And as Grandpa would say... "Let this be a lesson to you sonny."




DHMH Considerations for conference committee:  LDESGM response in blue

Regarding SB596:

Area of agreement: Physicians do need to be educated regarding the use of long-term antibiotics and antimicrobial therapy for the treatment of late stage Lyme disease.

Area of concern: Lyme advocates are concerned that the document required to be sent to the licensed physicians will not include the positive use of long-term therapy and will include other information that will make it harder for their physicians to use their own judgment in creating a clinical treatment plan utilizing long-term therapy. 

They also have concerns with the fact the Maryland Board of Physicians do not, understandably, have the training and experience required to recommend guidelines for such a complex infectious illness. There currently exists multiple controversies surrounding the diagnosis and treatment of tick borne illnesses, not only in Maryland, but across the country. Individual treatment plans must remain flexible to insure each patient receive optimal care. Procedures necessary to diagnose and treat patients with tick borne diseases varies greatly depending on many facts, including coinfections (Bartonella- Cat Scratch fever- Trench fever; Babesiosis- WA1- Microti; Rocky Mountain Spotted Fever; Ehrlichiosis- HGE- HME; Mycoplasmas; STARI- Master's disease; Histoplasmosis; Parvo B-19; Leptospirosis; etc.), length of illness, individual symptoms, allergies to medications, repeated exposures, patients previous medical history, etc. The infectious "soup" dubbed 'Lyme' can be a complex infectious disease than has disabled and has caused death in some individuals. Treatment should not be restricted if patients are to receive the best care possible for their individual situation.

Reasons to justify the concern: It has been mentioned that the Board of Physicians will rely heavily on the CDC’s stated standard of care. While a lot of the information on their website is favorable, there is a lot of conflicting information also. A brief paper including a few of the contradictory statements is included with this summary. What is to guarantee that the document will include diagnostic and treatment information such as recommended by the International Lyme and Associated Diseases Society (ILADS)?

Other concerns include the Board's reliance on and involvement with the Maryland DHMH's and/or John Hopkins severely restricted and outdated Lyme disease recommendations that are often based on single medical papers published by physicians involved with the failed vaccine, multiple patents, research grant dollars, and other income producing ventures, as well as related individuals involvement with those who are developing the insurance industries cost cutting treatment protocols which restrict patients being reimbursed when having the better tests and/or long term treatment that is often nescessary when their physicians order it. The DHMH, an organization created to address health concerns across the state, has disappointed Lyme disease patients for years. To add insult to injury, they strongly opposed both the bills that would improve the quality of life for Lyme patients and allow the more advanced, up to date, peer-reviewed treatment guidelines to be the standard of care. In spite of repeated requests over the years, they have refused to increase tick borne disease awareness and education efforts across the state, which have basically been non-existent to date. They have repeatedly refused to cooperate or attend free educational programs with world leading doctors in this field, as well as seriously consider requests from patient and support groups from across the state. They continue to be one of the main reasons patients have come to ask for help from the honorable members of the Senate and House.

Possible correction: Include in the bill that the document will not be created until the Board of Physicians meets with Lyme advocates to discuss their concerns. Also, stipulate that the document contain information from both the CDC as well as ILADS. 

(In my opinion, and based on the concerns of many patients, their physicians, and organizations across the state and the country, we do not feel the bill in this current amended form would be of any benefit to patients and could actually be detrimental to their well being.) Vote NO when this amended bill, or any part of it, comes for a vote either by itself, or if it is rolled over into any other bill. It no longer resembles the original well intended bill promoted by the original sponsors that was designed to help patients and address their concerns.

Regarding HB1323

Area of agreement: There is much difficulty in diagnosing Lyme disease, the tests are inaccurate, and there is much disagreement on the use of long-term antibiotic or antimicrobial in the treatment of late-stage Lyme.

Area of concern: DHMH is the authority to establish the Task Force and appoint a chairperson.

Reasons to justify the concern: DHMH has been very vocal in opposition to this bill and has made it clear they do not feel there is a need for a Task Force. Attached is their letter of opposition on HB1323 to EHE. They also opposed this in the House and their strong opposition was made apparent in the hour conversation between them and the Lyme advocates after the bill hearing.

Possible correction:

(1) Remove DHMH from the establishing authority and replace it with the President of the Senate and the Speaker of the House. (This is how Delaware’s Task Force was set up) 

Remove the DHMH from establishing authority and replace it with the President of National Lyme Disease Association, someone who is experienced with the multiple complex health and legal issues surrounding Lyme and Tick Borne Diseases. An alternate suggestion would be to place the authority with the Secretary of the Maryland Department of Natural Resources (or their designee), who's employees are exposed to these diseases on a daily basis and who have been educated concerning the health and legal issues surrounding tick borne diseases.

(2) Give the authority to the Task Force to choose their own chairperson

(3) Since DHMH had a veterinarian speak against this bill in the House and as the Department’s Center for Veterinary Public Health has the task of overseeing Lyme issues with the Department, a veterinarian should be a member of the Task Force.

(4) Reject the amendment limiting the number of support group members, who represent increasing numbers of patients from across the state, to 2 instead of the original 4 requested.

Attached supplements:

Letter from DHMH to EHE in opposition to HB1323

Copy of Delaware’s Task Force bill which has been enacted

Conflicting information found on CDC website