posted
Forwarded message from the Massachusetts Lyme Legislative Task Force
Dear Friends,
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:
Welcome and Introduction to Lobby Day Members' Lounge - Room 350 Tuesday, October 20 9:30 to 10:45 a.m.
However, we will be available to greet later arrivals in the reception area of Representative Linsky's office: Room 146.
The Lobby Day will take place all day long on October 20. Feel free to schedule appointments with your legislators throughout the day (but save time for the hearing at 11:00!).
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. 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:
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:
Helen Brown – Whitman Donna Castle – Ayer Janice Dey – Westport Susan Fairbank-Pitzer – Danvers Sharon Hawkes, MLIS – Lenox Jayme Kulesz – Groton Sheila Statlender, Ph.D. – Framingham
Tips for Connecting with Your Legislator
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. See your visit as an educational experience. Visiting your legislator is an empowering experience for both you and your family. It is a learning experience for children to see that they have a voice in representative government. Most legislators sincerely enjoy meeting and talking to children. You and your children can prepare for the visit by visiting the Massachusetts General Court web site, especially the page on the lawmaking process http://www.malegislature.gov/Engage/HowIdeaBecomesLaw. Younger children might enjoy the Secretary of the Commonwealth's Kids' Zone: http://www.sec.state.ma.us/cis/ciskid/kididx.htm. Relax, and enjoy the time you spend with your legislators.
6. 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.
Sheila M. Statlender, Ph.D. Clinical Psychologist 53 Langley Road - Suite 330 Newton Centre, MA 02459 617-965-2329
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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Because Massachusetts residents are being asked to contact legislative committee members, we cannot use our Voter Voice 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:
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:
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:
Your name 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: [email protected].
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
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
Try to set your meeting up with your legislator, rather than with an aide, if at all possible.
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.
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:
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
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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posted
Forwarded message from the Massachusetts Lyme Legislative Task Force:
Dear Friends,
We want to update you with the exciting information about our upcoming hearing and Lobby Day:
HEARING:
Tuesday, October 20, 2015 Gardner Auditorium Boston State House 11:00 am
Two large professional organizations are endorsing the Lyme bills:
1. The American Council of Engineering Companies of Massachusetts (ACEC/MA), an organization comprised of land surveyors and engineers, told us that 40% of the respondents to their members' survey reported having had Lyme at some point. They will be sending a representative to testify in favor of these bills. Here is the link to their website:
3. ILADS has agreed to send its member, Dr. Betty Maloney, a co-author of their recently published Lyme disease treatment guidelines, to testify in favor of the bills. Dr. Maloney also will attend the opening event for our Lobby Day. Be sure to join us and meet her!
4. Pat Smith, president of the Lyme Disease Association, Inc., an experienced Lyme activist with vast legislative experience, has accepted our invitation to testify. She too will attend the morning reception, as well as the hearing.
Other experts who have agreed to testify include but are not limited to Dr. Sam Donta and disability attorney Mala Rafik. Additional local physicians plan to testify. Lorraine Johnson, executive director of Lymedisease.org, and Dr. Daniel Cameron, president of ILADS and another guidelines co-author, have agreed to provide written testimony, as will others.
Please show your support for this effort by coming to the State House on October 20. We really need to pack the hearing room!
LOBBY DAY:
We want to remind you that we have scheduled a Lobby Day on the same date, in order to maximize the benefit of your travel to the State House:
Welcome Reception: Members' Lounge - Room 350 Tuesday, October 20 9:30 to 10:45 a.m.
Meetings with Legislators: Throughout the day (see #3 below)
Representative Linsky, who filed H.901, is sponsoring our Lobby Day and will address our group at the Welcome Reception. Senator Gobi, who filed S. 502, also plans to attend. This is a great opportunity to thank them for their support. We hope you will be able to join us.
INSTRUCTIONS FOR MEETING WITH YOUR LEGISLATORS:
1. Please call the offices of your legislators in advance to schedule an appointment. You can find your legislator's contact information by clicking on this link:
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. We will be distributing legislative packets for you to deliver to your legislators, as well as "Lyme" green ribbons for everyone.
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:
This is an exciting opportunity to work together on meaningful change. The eventual 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.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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posted
Quick check in from the Massachusetts Lyme Legislative Task Force:
We're all exhausted, but wanted to share some great news from today's hearing. Be sure also to check out Fox News tonight for their coverage. We hope others who were there will chime in to add their impressions.
Approximately 200 people showed up for the hearing, and we had a strong turnout for the morning Welcome Reception and Lobby Day too (especially so, in view of the early hour and awful traffic).
The sponsors of all three bills, Linsky, Gobi and Speliotis, started by offering their testimony on a joint panel, driving to work together to get a Lyme insurance mandate passed. Several physicians turned out to testify in support of the bills as well, both local and Dr. M who came to represent ILADS. The JCFS members were attentive and asked good questions, seeming supportive of our concerns.
Our major opposition came from two lobbyists representing the concerns of small businesses. They are opposed to all insurance mandates. It was interesting to hear the astute challenges to their testimony from several of the Committee members themselves.
Testimony for our bills continued throughout the day until after 5:00, interspersed with testimony from a few other bills. The Committee advised speaking from the heart, and it was very moving to listen to testimony from so many affected by Lyme - including several legislators.
Most of the hearing was videotaped by a professional videographer who volunteered his services, having a good friend suffering from Lyme. He has prided to send the video to us - when that happens, we'll do our best to post it for the community.
Keep those fingers crossed!
Finally: also see below for the coverage by the State From: State House News Service:
[mailto:[email protected]] Sent: Tuesday, October 20, 2015 4:05 PM To: [email protected] Subject: COVERAGE FOR LYME DISEASE TREATMENT DEBATED BEFORE PANEL
COVERAGE FOR LYME DISEASE TREATMENT DEBATED BEFORE PANEL By Andy Metzger STATE HOUSE NEWS SERVICE
STATE HOUSE, BOSTON, OCT. 20, 2015.....Individuals convinced that insurers are denying adequate coverage for Lyme disease faced off against business groups seeking to keep health care costs down and have concerns about lawmakers mandating treatment contrary to what experts recommend.
Those who have suffered from Lyme disease said they encountered resistance or a lack of understanding from physicians before receiving a diagnosis and treatment.
"You can't get treatment in Massachusetts very easily," said Bonnie J., of Boylston, who said her daughter had heart palpitations and problems with her legs as early as the age of nine and suffered from "brain fog" associated with the tick-borne illness. It wasn't until J's daughter was 18 that a doctor connected the symptoms to Lyme disease, said J.
Eric Linzer, senior vice president of public affairs and operations at the Massachusetts Association of Health Plans, said insurers "typically" cover Lyme disease, but he said the Centers for Disease Control and Prevention and the American College of Rheumatology recommend up to 28 days of antibiotic intravenous therapy, and have found treatment beyond that is no more effective and can create "longtime health complications."
"There's definitely questions about the efficacy of this type of treatment. What concerns us is you're putting into statute requirements that may conflict with appropriate medical treatment or ultimately could be harmful for consumers," Linzer told the News Service.
Bills (H 901/S 502) filed by Rep. David Linsky and Sen. Anne Gobi count a majority of members of the 200-seat Legislature as cosponsors, and the legislation would mandate coverage of "long-term antibiotic therapy of Lyme disease" when deemed medically necessary.
The bills, which were the subject of testimony Tuesday before the Joint Committee on Financial Services, specify that long-term antibiotic treatment "shall not be denied solely because such treatment may be characterized as unproven, experimental, or investigational in nature."
Linsky's bill has 124 sponsors from the House and Senate spanning the ideological spectrum and including Sen. Jamie Eldridge, the Senate chairman of Financial Services.
Dr. L, who has both treated and experienced Lyme disease, said the 28-day treatment is sometimes not enough and said that sometimes even that shorter coverage is denied.
"You can be sick with anything else. They'll pay for it," said Dr. L.
Proponents and opponents of the mandate agreed that the medical community is not unified in its approach to Lyme disease treatment.
"There's a lot of controversy in the treatment of Lyme disease," Lantsman told the News Service. She said there are "two schools of thought" about the measures needed to treat it, and she said research shows the "persistence" of the disease.
Merillyn C. said she contracted Lyme disease while showing a property in Westminster, but when she went to an emergency room a doctor told her the pain she felt was "psychosomatic."
"I wish I never had this, but I know the truth," C. said. She said, "People are dying of this. They're suffering unnecessarily."
Her voice choked with emotion, Christine L. told the committee she had been misdiagnosed for years and spent tens of thousands of dollars out of pocket as Lyme disease took a toll on several aspects of her life.
"It has severely affected my ability to think and to function," L. said.
Jon Hurst, president of the Retailers Association of Massachusetts, testified against insurance mandates in general, noting that the larger self-insured organizations are not subject to the state's mandates, meaning small businesses have a larger burden for insurance.
Members of the Financial Services Committee were greeted with applause as they challenged Hurst and National Federation of Independent Businesses Massachusetts State Director Bill Vernon on the benefits of broader coverage.
"You don't know what you're going to get sick from," said Rep. Aaron Michlewitz, the House chairman of the committee.
A resident of Beverly, Hurst said he and one of his sons have both contracted Lyme disease, and said it could be an enticing option for insurance coverage.
"Maybe if you lived in an area where it is very prevalent that would be a nice option to be able to buy that coverage," said Hurst, who said he doesn't want people to "be forced to pay for it."
"At one point I was thinking the way you're thinking," said Rep. Don Wong, a Saugus Republican, who noted that dogs from one area could go to another area and "ticks could be on them too."
"We shouldn't be leaving anyone behind," said Rep. Tim Madden, a Nantucket Democrat, who said some employers want insurance mandates.
There are thousands of new Lyme disease cases diagnosed each year in Massachusetts and the problem is serious. Many end up dealing with effects of the disease for years. Political Reporter Sharman Sacchetti was on Beacon Hill for Tuesday's hearings.
The CDC says Mass. has the second highest rates of Lyme disease in the nation, second to Pennsylvania. The question is, in cases where they may become chronic, who pays? . . .
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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