2010 HB 798

http://mlis.state.md.us/2010rs/bills/hb/hb0798f.pdf

Fiscal and Policy Note

http://mlis.state.md.us/2010rs/fnotes/bil_0008/hb0798.pdf

Bill Information

http://mlis.state.md.us/2010rs/billfile/hb0798.htm

House Action

2/9

First Reading Health and Government Operations

2/10

Hearing 2/23 at 1:00 p.m.

Letter to Sponsor

February 19, 2010

The Honorable Susan C. Lee

cc: Maryland Health and Government Operations Committee Members

House Office Building Room 209

6 Bladen Street

Annapolis, MD 21401

Dear Representative Lee,

I am contacting you on behalf of the undersigned organizations concerning HB 798, the Task Force to Study Lyme Disease bill. After an in-depth review of the bill, the history of Lyme disease legislation in Maryland, and after several communications by one of the Maryland Support groups with your well-informed Legislative Aide, we are responding to your recent requests for comments on the bill. Due to weather related issues and the recent scheduling of the bill for a Feb 23 hearing, we are taking the liberty of sharing our comments with the entire Health and Government Operations Committee by way of this letter, rather than encouraging patients, doctors and groups to venture out in harsh weather to express their views at a hearing.

We all appreciate the rationale behind HB 798 and the intent of Maryland legislators to initiate a Task Force to study and report on Lyme disease issues within the State, but are unclear why this Task Force is necessary at this time. In 2007, Maryland formed a Task Force under the Department of Health & Mental Hygiene (DHMH) ¹, which caused significant problems between the patient community and the DHMH, as patients felt the committee membership was not representative of the chronic side of the Lyme disease issue. After a year of meetings and an incredible amount of work was submitted to the committee by volunteer patient advocates, the situation deteriorated and led to the resignation of the patient advocate members who felt the committee membership was presenting a biased viewpoint− the final report was skewed and they did not want their names on it. The proposed task force in HB 798 has a similar structure outlining similar goals, thus there is no reason to believe the outcome would produce different results.

Putting the discord aside, the earlier task force produced dozens of recommendations, few appear to have been implemented, aside from the Maryland Get Ticked Off ² brochure. Additionally, it seems that little monies have been made available from the DHMH budget for Lyme disease since those recommendations were released. Has the fiscal situation changed? Can we be assured the legislature and the DHMH will appropriate monies for new findings when previous ones have been left unfunded? If the answer is no, then it appears that the need for this Task Force is moot, and perhaps efforts can be best directed elsewhere.

Attempts to improve the Lyme situation by task force creation in other states have also proven to be unsuccessful in accomplishing their goals. Maryland resident Ron Hamlen, PhD, served as a member on the Delaware Lyme Disease Task Force (established by Resolution SCR-40, passed 6/10/2004). ³ Although the Task Force was established with the best intentions, he reported the Task Force “accomplished nothing of substance” and “the majority of members assigned to the committee showed little interest, often did not show up for meetings and did little to no work.” After a year of working to accomplish their goals, he and other members felt “nothing but a lot of frustration associated with the creation of a Task Force.” The membership requirements outlined in SCR-40 and the assigned duties were structured similarly to what is seen in HB 798. New Jersey has a long standing Governor’s Lyme Disease Advisory Council ⁴, established in 1991. The last updating of the website appears to be in 2000 and I am unaware of anything being accomplished by the Council the past 10+ years. If the Lyme patients’ situation is expected to change for the better, we need substantive changes.

This bill comes at a time when the controversies over how to define, properly diagnose and adequately treat the disease are still undecided amongst members of the scientific and medical community. A Task Force constituted in this manner with such a broad charge over the period of one year can hardly be expected to come up with appropriate solutions to this complex issue.

In lieu of a bill requiring members to tackle the controversial issues relevant the diagnosis and treatment of Lyme disease, as is specified in HB 798, a more appropriate avenue might be for a Task Force to:

· Ensure that a broad spectrum of scientific viewpoints is represented in public health policy decisions and that information disseminated to the public and physicians is balanced;

· Ensure interagency coordination and communication with constituency groups;

· Ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;

· Identify opportunities to coordinate efforts with other state agencies and private organizations addressing such diseases; and advise relevant state agencies on priorities related to the Lyme and tick-borne diseases.

All these issues are a concern when considering enacting a law that could negatively affect patient care. Therefore, at this time, we are reluctant to support this bill in its current form.

Sincerely,

Patricia V. Smith

President, Lyme Disease Association for herself & the undersigned organizations

Lyme Disease Education & Support Groups of Maryland

Harford County Lyme Disease Support Group, Inc.

Central Maryland Lyme Disease Support Group

Lyme Disease Association of Southeastern Pennsylvania, Inc.

Military Lyme Support

Lyme Disease Association, Southeast Florida Chapter

Time for Lyme, Inc.

Brookfield/Wolfeboro, NH Lyme Support

Family Connections Center for Counseling

Alaska Lyme Support