posted
The MA Lyme Bill is a huge win. I am grateful for the folks who contributed to the effort.
I live in California and would love to see a similar bill proposed and passed here. I was recently denied IV antibiotics and it is mind blowing what insurance companies get away with. I am considering going to my state Assembly member/Representative to raise the issue and ask for help.
Are there any efforts to get something like the MA Lyme Bill on the radar in CA? I am considering what legislators and community members to involve. I'd rather coordinate than duplicate efforts. I have a history of civic activism at the state level and it's incredible what can get done...
I'd also love to learn from the MA folks about how they tackled their recent fight. MA activists - how did you do it? Do any of you know who the central players are and whether they'd be willing to email/talk with me?
Posts: 11 | From Northern California | Registered: Jul 2016
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, Citrus Lane,
I am sorry to hear of your fight to get treatment. It is still a huge problem for so many. And the bill in Massachusetts is only part of the solution, as without education, the law will have no strength.
I would recommend that you speak with the folks at Lyme disease.org, who are located in CA and are familiar with the challenges faced there. They also helped Massachusetts, with written materials, their voter software, and plenty of advice.
Best wishes,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Citrus Lane, Have you contacted the California Lyme Disease Association? That could be another starting point and maybe they could contact the organization(s) in MA that helped with the bill.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Maybe you can contact Rep. David Linsky, D-Natick--he filed the legislation:
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, Citrus Lane,
I am sorry to hear of your fight to get treatment. It is still a huge problem for so many. And the bill in Massachusetts is only part of the solution, as without education, the law will have no strength.
I would recommend that you speak with the folks at Lyme disease.org, who are located in CA and are familiar with the challenges faced there. They also helped Massachusetts, with written materials, their voter software, and plenty of advice.
Best wishes,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Citrus Lane,
all the replies you have are strong suggestions.
shazdancer's suggestion is what I was going to say. They are fantastic advocates in so many ways. I would start there. And they are based in Calif. Here's the link to connect with them:
posted
Thank you all so much for your suggestions. I'm going to fight my own insurance appeal first, and once I've gotten started treating, hopefully I'll feel well enough to reach out.
Posts: 11 | From Northern California | Registered: Jul 2016
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posted
Citrus Lane, sorry to hear of your trouble. Without knowing your situation, I recommend you evaluate getting starting with oral dosage and not wait for IV, if you are not doing that already. The multi-year battle here in MA was won by an incredible group of women who went to war because they all had children who had been decimated by Lyme and wanted to help others. Thus, I recommend you organize a band of warriors willing to fight tooth and nail to the very end. Our bill passed a few minutes before midnight on the last day of our legislation session. We are very proud of our warriors in MA. It was a huge victory for them and all Lymies because the more states that are victorious, the easier it becomes for others. Good luck.
Posts: 360 | From Massachusetts | Registered: Dec 2012
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posted
I can help. I have a background in things like this. If we can get a copy of the MA bill, I can see about drafting up something similar.
One of the most effective ways to do this is Legislative Day. The one for this year has passed already, but we can plan for 2017. We can go as a group to the capital and meet with our reps and ask them to sponsor the bill.
I can walk us through all the steps and will take up all the coordination of our meetings.
I'm not sure exactly what the dates are for next year, but I think it's usually in May some time.
I can contact Lyme Disease.org next week. This week is pretty full for me. I'll check to see what they've already done, and what they know about the political climate around here.
Posts: 31 | From CA | Registered: Sep 2016
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posted
Thank you so much, RedDragon! Can't wait to get an update from you on where Lyme Disease.org is on this.
Honestly, I'm fighting my own insurance battle for treatment right now, so I don't have the juice to spearhead this movement. But I do want to participate!
posted
Looks like I'll have to push it back until next week. Had some major family stuff come up that I have to deal with, including a mother in hospice.
But I'll get on it next week. Unless my mother dies. In which case it will have to wait until I've dealt with that.
On the bright side, the issue isn't going anywhere, and we have several months before we even need to start thinking about legislative day.
Thank you for the link, Citrus Lane! I'll give it a gander next week!
Posts: 31 | From CA | Registered: Sep 2016
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posted
Thank you! Good luck with everything with your mom. We have to put the family/individual first... We can't take care of our community if we're not taking care of ourselves. All the best. Looking forward to your update, whenever it comes.
Posts: 11 | From Northern California | Registered: Jul 2016
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posted
Alright. Mom has passed now, health got worse, but it's about the right time to start planning. Who else is in?
Posts: 31 | From CA | Registered: Sep 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Red,
So sorry to hear about your mom passing. My sincere condolences sent your way.
Before you go down the legislative road, you'll need to do a lot of self-education, both on Lyme history and bills and your entire legislative body, and that is just for a starter.
You will also need a number of healthy volunteers who are also educated and can start with you and stay with this project during the entire process (no time off for feeling ill, appointments, etc.).
You need to remember that nearly all people I've ever know to work on a bill have either had to quit for health or lack of time reasons, because they've relapsed horribly from the exhaustion and immense stress, had disagreements with others they are trying to work with, suddenly got flip-flopping legislators once the IDSA got to them, and/or got overwhelmed with the hugeness of the project.
You can start here by reading about the MA legislation concerning the bill you mentioned.
And before you do hit the "go" button you should ask yourself why others in your state who have been doing Lyme advocacy for years and have a lot of experience with it...
posted
That is all super good advice. I have a background in politics, so I know how much energy it takes. 80-100 hour work weeks and forgetting to eat for days on end is the norm. It's damn near impossible even for a healthy person.
I've been thinking about this too, and thinking that JUST covering Abx and nothing else seems silly. I mean, I know lots of people need them, but I don't think I've ever met anyone who got better on Abx alone. Obviously, it's a start, but if I'm going to expend a ton of energy, I'd love to see it cover more than pharma.
I'll plan to reach out to them next week and see what info I gather. I obviously don't want to step on any toes or repeat any work already done.
Thank you for the insightful post and all the links!
Posts: 31 | From CA | Registered: Sep 2016
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