The Vermont Lyme Information Resource reorganized and renamed itself recently--we are now the Vermont Lyme Network. We have been increasingly active in outreach and education activities, with a lot of good media coverage over the five years we've been in existance.
With the IDSA guidelines last year, we began making plans to approach the legislature this session. Several new members on our steering committee have really run with this, and a few weeks ago approached some legislators to feel out the possibility for a resolution simply recognizing the issues around Lyme and asking them to support the federal bill. To all our surprise, we had such a positive response from our legislators that it almost ran away from us! We had to move fast to catch up, and make sure we didn't get in each other's way too much in the process.
The last 3 weeks have been amazing. With the resolution making the rounds of the house for co-sponsors, we got lucky and got a slot to sponsor a legislative breakfast and "awareness day" last Tuesday, April 10th at the State House.("Awareness days are what lobby days are called in Vermont.) We had several respresentatives and senators helping us through the process and advocating for us.
In ten days, we made arrangments, organized people, pulled together literature (thanks to LDA, ILADS, and the SE Pa Lyme group), chipped in to pay for the coffee and made or begged breakfast breads, donuts, bagels, coffeecakes.
It was an incredible success. We had legislators thanking us for doing what we doing and for bringing it to the legislature.
My legislator arranged for me to talk to our governor in his offices, to explain the key issues and the impact they were having on people's lives. I couched it in terms of breaking through paradigms (we all have them- they are ways we structure what we know about the world, but can make it hard to adjust to new information that seems to contradict what we are used to)-- rather than pointing fingers. La, he got it! And later showed up at our table to talk to more of us and to pick up some literature.
The best: Because we were there that day, the first sponsor of the resolution arranged to introduce it to the joint session that day (it had not originally been scheduled. When they introduced it, we found out that it had 80 sponsors (out of a total of 181 reps). Pretty amazing.
The resolution was referred to the House Committee on Health Care as a Bill. I have been asked if we are willing to testify. You betcha-- and we can fill the room!
The resolution by itself is a simple and fairly innocuous statement of the reality of Lyme, certainly not a barnburner. BUT, it has opened the doors to what we want to have happen in the long run: recognition of the ILADS guidelines alongside the IDSA guidelines. It's not a contest, and we will do our best to keep it from becoming one. I think our approach will work, at least in Vermont (YMMV).
As we talked to legislators, we returned again and again to the fact that there are two sets of guidelines. We focused on the validity of the ILADS guidelines (peer-reviewed, registered in National Guidelines Clearinghouse) and of ILADS as a professional society of clinicians and researchers who specialize in tick-borne diseases.
We deliberately did NOT talk about protecting drs-- that's a red flag we don't need, and protection will happen naturally if we can get ILADS guidelines on the table.
What we did talk a lot about was the fact that insurance companies are using the IDSA guidelines to deny coverage for treatment and medicine to people with Lyme. That really got some attention. And since it had just happened to me and I could tell them what that could mean for my future, it made it very concrete for them. And of course, we had other people's stories to add.
The Resolution may or may not go to hearings this year-- busy year, lots of issues. The request to petition Congress in support of HR741 is likely to be dropped (not because of lack of support but because the VT legislature has traditionally not seen that as their job). But the issue will not go away-- we have a lot of folks backing us up, and if it falls off the table, it will get picked up and put back on.
We see this as the beginning of a process that may take a while, but which will be successful in doing what we need it to do.
Patience, persistence, and focus.
Dayle Ann Stratton, director Vermont Lyme Network
Posted by pmerv (Member # 1504) on :
Dayle Ann, this is great news and I wish you success. The 2 standards of care is pretty basic and easy to understand. Cancer patients get to choose. Why shouldn't we?
Posted by sometimesdilly (Member # 9982) on :
Dayle Ann-
thanks for taking teh time to share your successes in VT..
Congratulations!
Your group is clearly on a roll and it is GREAT news to hear how receptive your reps have been so far.
I'm sending you a PM with a few specific questions.
dilly
Posted by dmc (Member # 5102) on :
wow, wonderful. So glad dilly posted a notice in Medical to check this out. Good job Vermont Lyme Network!!!
Posted by hatsnscarfs (Member # 6562) on :
Great job! Thanks. I'm a part time Vermonter and would have already moved there had Lyme not eaten up my retirement fund! Let us know if there are hearings we can attend. hats
Posted by Dayle Ann (Member # 1657) on :
I've been offline for the last week because of the big storm that hit the NE, and am trying to catch up. Dilly, I didn't get your PM-- please try again and I'll try to answer your questions.
We have learned that as a result of our legislative breakfast, more legislators have signed on to the resolution!
We haven't heard yet about hearings-- there are several significant issues this year (now including storm damage). When hearings are scheduled (whether this session or next, it would work best if they hear from Vermonters.
If it ever gets to the point where it is clear that the insurance lobby is mixing in, that may change. We'll see.