posted
Will anyone sick with lyme in florida please email me at [email protected].
All I need is your name, mailing address and phone number and I will get your names on a petition that will be viewed by congress soon.
We will get insurance coverage, doctors, more research, you name it. I spoke with marco Rubios office, this is the way to get it done. PLEASE EMAIL ME.
I am a lyme disease advocate and activist and I am trying to change things in this state for all of us.
Posts: 18 | From South Florida | Registered: Jun 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey ali,
Nice to know you want to do something to help the Lyme situation in Florida.
Unfortunately, having folks send you their personal information so you can add it to a petition is not good for our members or anyone else.
First, no one here should send anyone their personal information for any reason. No one, no how.
Second, in general, allowing an unknown person to put your name on a petition, especially site unseen, is another really bad move for all individuals.
Third, folks reading that you are doing this can object to the petition and invalidate it.
Forth, promising people they will get, "... insurance coverage, doctors, more research, you name it", is not quite true, is it? If it were that simple, we would all have those things years ago.
My bet is you are well-intended in your desire to try to help, but this approach needs a lot of work and much more disclosure before anyone should/would make an effort to assist.
Please feel free to email me if you have any questions or concerns.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Another quick thought....
Senator Rubio just recently took office. It is nice to educate him about the Lyme situation, but you would also need to educate and have committed to your effort over 500 additional House and Senate members to get a bill passed.
One Senator can not do it all alone.
In the event you weren't aware, there already are two Lyme related bills in Congress. One in the House (sponsor-Smith) and one in the Senate (sponsor-Blumenthal).
It is hard to imagine other legislators would attempt to submit a third bill on Lyme disease at this time. Not impossible, but just not real probable.
If you would like to get your Senator signed on as a cosponsor to the current Senate bill, the number is S-1381.
Keep in mind Congress is on vacation right now and will be for a while longer. Ok?
posted
I ask you all: How were these laws changed in other states then? It started with a petition. NOthing is going to change until people stop being afraid and stand up and say We want to be heard, we want to be counted, and we want the same protection people in other states have. Rubio Etc told me they were not aware of the sheer numbers of people sick with lyme in FL. So did Dr Caring Blackmore with the Dept of Health. We need a bill, a NEW bill, or at least a jumpstart on the old one. I have been working day and night for this. Most people have yelled "add me" and I thought I was making process. I am sad that the progress ends here.
Posts: 18 | From South Florida | Registered: Jun 2011
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posted
I'd say, since there are two federal bills entered this year, that you consider working to get protective FL legislation.
There are, what now? five or six states with protection? That state protective process should keep happening.
Here in CA, there was a professional lobbyist who knew the capitol well - he worked with the CA Lyme Disease Association and the legislators.
Posts: 13116 | From San Francisco | Registered: May 2006
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James1979
Unregistered
posted
Aren't there 8 states with protection now?
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onbam
Unregistered
posted
Pretty sure it was much more involved than just a simple petition.
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posted
So what are the protected states? I know of CA, RI, CT, NH, I think MA, TX passed some legislation but I don't think it's signed yet -?
All had to work on the language of the legislation with Lyme advocacy groups, I believe.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry you are feeling discouraged at this point. It comes with the political territory though, so it is something you will need to expect.
To respond to your concerns...
You said.. "I ask you all: How were these laws changed in other states then? It started with a petition."
Laws being "changed" are one thing, making a new law is completely different. Perhaps a petition is the way to "change" one already in existence, but I don't know of any Lyme-related bills that were started by a petition.
The first step in getting a bill passed is by first educating people, including yourself. This can take many years and involves a great deal of work by a large number (team) of people. Exhausting work.
You said.. "NOthing is going to change until people stop being afraid and stand up and say We want to be heard, we want to be counted, and we want the same protection people in other states have."
This is a good rally cry for political activism, but in a situation where already very sick people's lives are at stake and their future is in the politician's hands, much more has to be considered.
The first concern here is to not throw the ones you want to help under the bus while trying to prove a political point.
You will have to understand that what you do today (the results) won't be felt by those who are now ill in much of a significant way. It will take years, if it happens at all, to make positive changes. Your concern must be on those who will need help in years to come.
A law is a law (good or bad), and very rarely does a bad one get changed, and if it ever does, it can take many years, lots and lots of dollars, lots of legal intervention and lots of energy. In the meantime, a bad bill can cause a lot of damage to many people, including our children, nationwide.
You said.. "Rubio Etc told me they were not aware of the sheer numbers of people sick with lyme in FL. So did Dr Caring Blackmore with the Dept of Health."
Exactly! That is why you need to educate, educate, educate. One or two people now knowing there are Lyme patients in Florida isn't enough. You still have hundreds more legislators to educate before even attempting to make a new law.
BTW- What is the new law you are proposing? Is is posted somewhere for all to see?
You said... "We need a bill, a NEW bill, or at least a jumpstart on the old one."
A bill sounds important, and it sounds like a nice thing, but it some circumstances it can be much more harmful than having no bill.
If you'd like to work on a bill, perhaps you can focus on first getting as many Florida Congressional reps co-sponsoring the bills that have already been submitted.
That would get you experience in dealing with how things work, the time it takes, and it would help the cause greatly.
You said... "I have been working day and night for this."
Join the club! And bless your heart for trying! We have some wonderful volunteer advocates who have been working for years to try to improve the situation for others and we can always use more. The fact you've even heard the word "Lyme" is a credit to their efforts.
Thank you so very much for caring!
You said... "Most people have yelled "add me" and I thought I was making process."
First, I can't imagine people signing on to any petition without having read it first, knowing the source and the future plans of the person asking for their personal information.
Maybe they do sign on without knowing what is going on, but I hope that wouldn't happen for all of our protection and for all of our sakes.
Second, you are making progress. You have started an open discussion (one of many to come if you are serious) with those who would be directly affected by a bill, gotten advise from them, and have hopefully learned some of the pitfalls of what you are considering doing.
You have also gotten a spark from a legislator and a DOH employee. That's great!
You said.. "I am sad that the progress ends here."
If you take this attitude now, you will only be hit with many many many more disappointments in the near future that will make you, at best, want to quit.
My thought is you simply need to step back and regroup a bit, like you would do for other situations when you don't get what you want.
As a mater of fact, here is one of my favorite sayings...
Experience is what you get when you don't get what you want.
Please don't quit. Once you are super familiar with the bills already submitted this session, we would love to see you working on educating Florida's legislators and getting them signed on to both the existing bills to give it that jump start you mentioned.
I am not trying to discourage you, just providing what I hope is valuable information that will help you make a goal and reach it.
Remember, if Lyme patients and the organizations that represent them don't want or support a new bill, that will hurt your efforts in the long run. You need to have their support... another time consuming and energy draining effort to add to the list of things to do.
If you have questions or concerns, please ask. We do want you to succeed in making progress.
PS... Sorry if this response is not organized or sounding like it is flowing. Have had too many interruptions while trying to respond.
posted
Your enthusiasm is admirable, but others are right that there is a process--a long, difficult one that must be followed to introduce and guide legislation and its important to lay the groundwork and say exactly what you are asking people to support.
You might want to study the bill that was proposed in 2004...here's a blog that details some of it:
Lori Hoerl worked tirelessly to push the legislation, but it was killed in committee.
One more thing that might have been mentioned already...Rubio is a US Senator. In order to get Florida legislation passed you would need to have sponsors in the Florida House or Senate.
Posts: 688 | From Florida | Registered: Aug 2001
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