Because Massachusetts residents are being asked to contact legislative committee members, we cannot use our Voter Voter system of contacting lawmakers. (Voter Voice only works for people contacting their own representatives, not those from other districts.) Therefore, contacting the appropriate people is a little more complicated. The following instructions from Massachusetts Lyme activists explain what’s needed. 

From The Massachusetts Lyme Legislative Task Force:

The hearing date for our Lyme insurance bills, H. 901 and S. 502, “An Act Relative to Lyme Disease Treatment Coverage,” has been announced by the Joint Committee on Financial Services (JCFS):

Tuesday, October 20, 2015, Gardner Auditorium, Boston State House, 11:00 am

There are two ways that you can help move this forward—1) by emailing or faxing written testimony right now, and 2) by showing up at the State House on the day of the hearing.

SENDING WRITTEN TESTIMONY NOW

Massachusetts residents can start right now to send in written testimony. Please send your message to the co-chairmen, Senator Eldridge and Representative Michlewitz, as well as every member of the JCFS.

You can find contact information for all members of the JCFS by clicking on this link:

https://malegislature.gov/Committees/Joint/ J11

Also: we suggest that you send a copy of your testimony to each of your own state legislators as well, to remind them to support these bills. You can find them through the link below, then by clicking on “Find a Legislator” in the left hand column:

https://malegislature.gov/People/Search

INSTRUCTIONS FOR WRITTEN TESTIMONY:

We know that it can be daunting to write these letters. We have provided a bare-bones basic letter below to get you started. But first, some specific details:

Please be sure to include the word “intent” (see first line of sample letter). This will protect us, just in case the language of the bill is changed in ways that could be detrimental:

Your letter must include:

1. Your name
2. Your address

Please feel free to add or alter the details, to personalize the letter with your story. If you have experienced insurance denials for treatment prescribed by your physician, be sure to include that information, especially if you then became sicker or more disabled. If your health and ability to function has improved with longer termantibiotic treatment, say so. Please try to be brief, limiting your letter to a page or so if possible.

Also: Remember that these bills are being heard by the Financial Services Committee, so it is important to mention the financial impact of Lyme disease. However, since cost containment is a big concern of the current legislature, it would be better not to emphasize the high cost of treatment or issues like bankruptcy.

Instead, you might emphasize that this bill will save money, because it will allow people to get treated sooner and more completely, avoiding the loss of productivity that results from disabling illness. Have you or your family member been unable to work and pay taxes, had to leave school or receive academic support, or had to receive disability assistance, as a result of Lyme disease? If so, be sure to mention these points as examples of the high cost to employers and to Massachusetts resulting from inadequate treatment.

Sample basic letter:

Dear Chairman Eldridge, Chairman Michlewitz and members of the Joint Commission on Financial Services,

Please support the intent of H. 901 and S. 502, An Act Relative to Lyme Disease Treatment Coverage, and report these bills favorably out of your committee. Please enter my/our letter into the public record as written testimony.

I/my family have been very ill with Lyme disease. We need our insurance company to defer to the clinical judgement of our treating physician, and to provide coverage for the diagnosis and treatment that s/he prescribes. Lyme disease is easier and less costly to treat when it is diagnosed and treated promptly.

Signed,

Your name

Your address

Please let us know if you have questions or concerns about any of this, and stay tuned for more information. If you would like us to submit your testimony for you, send it to us:  Lymebill@gmail.com.

CAN YOU COME TO THE STATE HOUSE ON OCT. 20?

Now that a new date for our hearing has been scheduled, we want to remind you that we have been organizing a Lobby Day in support of S. 502 and H. 901. The Lobby Day will be held on the same day as the hearing, in order to maximize the benefit of your travel to the State House:

LOBBY DAY:

Members’ Lounge – Room 350

Tuesday, October 20

9:30 to 10:45 a.m.

HEARING:

Gardner Auditorium

Tuesday, October 20 (same day)

11:00 am

Representative Linsky, the sponsor of H.901, is sponsoring our Lobby Day and will address our group at that time; others have been invited as well. We will be distributing legislative packets for you to deliver to your legislators, as well as “Lyme” green ribbons for you and for them.

INSTRUCTIONS

1.  Please call the offices of your legislators in advance to schedule an appointment for that day. You can find your legislator’s contact information by clicking on this link:

https://malegislature.gov/Committees/Joint/J11

2.  Try to set your meeting up with your legislator, rather than with an aide, if at all possible.

3.  Late arrivals? Have no fear! We will be available to greet you throughout the day and answer your questions in the reception area of Representative Linsky’s office: Room 146 at the State House.

4.  Please see below for tips for connecting with your legislators.

We will be posting more information and reminders as the date approaches. In the meantime, please continue to prepare your written testimony! If you have any questions or would like assistance with any of this, we are available:

lymebill@gmail.com.

It’s not often that the Lyme Community has such a terrific opportunity to effect constructive change. The passage of H. 901 and S. 502 will be a credit to us all!

Warmly,

The Massachusetts Lyme Legislative Task Force

• Helen Brown – Whitman
• Donna Castle – Ayer
• Janice Dey – Westport
• Susan Fairbank-Pitzer
• Sharon Hawkes, MLIS – Lenox
• Jayme Kulesz – Groton
• Sheila Statlender, Ph.D. – Framingham

Tips for Connecting with Your Legislator (adapted from A.H.E.M.)

1. Your legislators want to hear what you have to say.Legislators want to meet and speak with their constituents. Most people go into politics because they want to make a difference. Contact your legislator with the belief that she or he sincerely wants to hear what you have to say. Your voice and your vote count.

2. Meet with your legislator.It is very easy to set up a time to meet with your legislator. You can call his or her office and tell the legislative aide what day and time you will be visiting the State House. You can call both your state representative and state senator. Your legislator will either meet you him or herself, or have a staff member meet with you. The more notice you are able to give him or her about your visit, the better your chances of meeting with your legislator, instead of one of the staff.

Generally, legislators are in their State House offices Monday through Thursday. You can also set up an appointment to meet with your legislator at his or her district office which will be somewhere in the geographic area he or she represents. Legislators are usually in their district offices on Fridays and during late summer when the legislature is not in session. (You can find your legislator’s name and contact info here:

http://www.malegislature.gov/People/FindMyLegislator

3. Keep it simple.You do not have to go armed with facts and figures. Most legislators just want to hear your family’s story. Try to keep your comments focused. Think about the main points that you want to convey.

4. You are your own best advocate. You and your family may be the first Lyme patients your legislator has met. She or he may be unaware of the impact of Lyme, or may have preconceived ideas about it. Direct contact with patients and their families conveys essential information, and helps to put a human face on the disease. These connections can help her or him see that Lyme patients are their constituents and that their needs must be served.

5. Follow up your visit with a thank you letter. It is always a good idea to personally thank your legislator for taking the time to meet with you and your family. Sending a thank you letter will go a long way in facilitating good feelings about the visit.