posted
Lyme Legislative Forum Date: March 28, 2009
Reminder: The March 28 Lyme Legislative Forum is fast approaching: It's not too late to sign up and have a voice! All patient advocates welcome!
The introduction of a new Lyme bill, HR1179, emphasizes the urgent need for this forum! This is now our best opportunity to come together with diverse representation to discuss the bill's impact on us, as well as our potential impact on it.
Aided by experts in the legislative process and professional facilitators to provide resources and guidance, we have an unprecedented chance to come together to evaluate the legislation, discuss hearing options, and determine where in the process we have opportunity for the greatest input and impact!
Your help is needed NOW to show Congress there is a Lyme community of affected sufferers ready to demand REAL reform in research and treatment for Lyme and tick-borne disease. We need to come together, discuss our differences and areas of agreement and design a strategy to speak with a loud and definitive voice.
We CAN work together if we are dedicated to that task. With the help of experts in the legislative process and group-dynamics, we will:
Evaluate the language and effect of this bill; whether it helps us and how it can harm us;
Determine how best to impact the legislative process at all levels, through hearings, reports, markups and amendments;
Explore avenues of activism within our government structure other than legislation; for example, CDC, HHS, NIH accountability;
Explore activism at the local and state level.
We encourage you to join in and participate in this timely effort to become a more powerful and unified voice in the Lyme community!
Please register right away!
If you're staying overnight, call the Holiday Inn and ask for Kim Lee; she'll honor the special NatCapLyme rate.
You must register separately for the Lyme Forum. Hotel reservations must be made separately.
call NatCapLyme at (703) 821-8833; (301) 980-6788 or (703) 435-2080 --------------------------------------------
A block of rooms has been reserved at the Holiday Inn, Ballston http://www.hiarlington.com/ 4610 N Fairfax Drive, Arlington VA 22203, ( 703) 243-9800 - ask for Kim Lee
Kim said she will keep open an $89 rate if you book through her.
Posts: 107 | From Michigan | Registered: Nov 2004
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
I was both surprised and confused to have heard first from the Vogan program and now in this announcement that the intent of this gathering is to go against the current Lyme bill.
It is particularly perplexing as I had also understood one of the purposes of the conference was "present a united front" - and apparently this has already been discarded with this latest attempt to undermine the Lyme bill, I guess the concept of a "united front" is not something that was ever intended, after all.
So much work and time has gone into this bill on so many levels, and all of these points mentioned above have already been investigated, discussed, checked off, and undertaken in the process that created the bill.
I guess those who are not familiar with the process would not be familiar with the steps which go into the creation and introduction of the bill at the multiple levels which have been mentioned.
So I guess I am really confused by this announcement. I think it is - to say the least - very misleading to people and that is not a public service to them whatsoever = to intentionally mislead.
OTM
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I thought it was strange, too, since Frank Wolf will be presenting and he is one of the bill authors. Does he know that people might be coming to attack his bill?
Not that this bill is brand new - this its third introduction and barely anything has been changed, so there are no surprises. All the kinks have been gone over and over and worked out. Does someone really want us to start over?
We have been trying to pass federal legislation for over 10 YEARS!! We had years with two bills, years with three bills, and years with four bills! Two identical -or as they say "companion" - bills in House and Senate is BEST. We will likely have companion bills this year because all the legislators are working together. Unlike prior years when we had several different versions and everyone going every which way.
Is any legislation perfect? Probably not, but this year we finally have a chance to have a VOICE in the federal government. I hope everyone will get on board with it because currently we have NO voice, and we NEED ONE! I hope no one is planning to throw a monkey wrench in after all this work.
The LDA has done a brand new website area to make it super easy for people to contact their legislators, so go for it, everyone. http://cwork.com
I believe this legislation is as good as it gets: a committee with representation of our side, specific goals - what we want the govt. to do outlined specifically - a whole bunch of legislators who signed on as sponsors before and will likely sign on again without too much effort on our part. And I think it will increase transparency in Washington. How many times have we wondered what was happening, only to hear later that so-and-so had been funded, or something else? The govt will have to give reports of what they are doing to this committee, which has patients on it.
We've been waiting long enough for federal legislation. I, for one, don't want to reinvent the wheel and just procrastinate for a few more years while people are dying.
Fine if this workshop is going to get people on board, but it doesn't sound like it is.
The real danger is that the bill WON'T pass and we will be stuck in the same pothole we've been stuck in for the last 10 years, with no way out.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
I have been working on this project and am speaking only for myself here, but I can assure you that we at Nat Cap have taken NO stand on the bill as a group! We are an independent group, aligned with no other, which is why we felt we were in a position to address what we have observed to be a growing need in the lyme community - the need for understanding legislation language and process, as well as understanding other areas of government service in which our needs are not being addressed.
We have observed that there is much insecurity in the community when it comes to government action - legislative and otherwise! And that insecurity is justified! We saw a need for some new tools in our toolbox.
We felt that we were in a position, given our location and our independence, to provide an opportunity for EVERYONE, regardless of opinion or experience, to come together to learn, discuss, hopefully to move forward in unity where it exists, and agree to disagree where it doesn't; but for all hopefully, to leave the forum better prepared and more confident in their future decisions and activities.
Before supporting or opposing a bill, we need to understand it! We need to know more than what we learned in civics class. Language is everything when it comes to a bill! All too often the intent of a bill gets lost if the language isn't tight enough to protect it.
The Bayh-Dole Act is a good example. One of the intents of this bill was to accelerate research by allowing pharmaceutical companies to work with universities. Regulation, or oversight, was apparently missing from the language, which left it vulnerable, resulting in MONEY being the motivator of research, not health improvement! We have many examples of this in our current economic crisis. Lack of regulation, or oversight, can be disastrous!
When the idea for this forum was first discussed, my bottom line in making my decision about it was my own personal experience since being thrown into this lyme nightmare. I NEED THIS FORUM! I need to do everything in my power to be sure that every step I take gets me closer to controlling the impact this disease has on my daughter! Our infected children are looking at potential decades of lifeless living if we don't make the right moves. I need to hear the voices of experts AND the voices of other bright minds with different perspectives!
Are you aware that there are different types of hearings along the bill route? Some are public, others are not. Amendments can be made. If those hearings are private, we have no opportunity for input! Amendments can result in a bill that bears little resemblance to the original! Don't we want to know now, before we choose to support or not, whether we can impact the route this bill takes?
I'm sure you have seen President Obama's letter on the UOS website saying that he sent two representatives to our briefing in September. While the letter is wonderful and positive, I noted that he mentioned supporting PREVENTION, nothing about treatment or diagnosis. I assume that he supports those as well; but don't you see, that when it comes to legislation -to law - you can't assume such things? We need to be on our toes. We need to be well-informed activists!
I urge ALL of you who can, whether you support or oppose the bill, whether you think we need to focus on local or state action, whatever you think, come share your knowledge, experience and perspective; come learn from others doing the same!
If you can't come, then please use our website www.natcaplyme.org to send your comments. Sharing these comments will be a part of the forum. We want all voices to be heard.
The outcome of the forum will not be determined by those of us who planned it; it WILL be determined by those of you who participate!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
This had better not just be a forum for more dissension among lyme groups. I was hoping it would be a place where all points of view could be expressed in a way that would finally bring a united front.
If the forum does nothing more than educate activists about the process of lawmaking, it would be useful. If it brought about real harmony among groups, it would be wonderful.
I know that there are legitimate concerns about whether the research funding in the act will be commandeered by the opposition. As far as I can see, that is the only real bone of contention. Everything else about the need for it and who should NOT be getting more NIH funding is surely not an area of disagreement.
It is time for people to stop thinking about who will get the credit. Everyone needs to work for the common good.
I recently read about a technique that is used to get the best results out of a committee (any group that is gathered for a specific purpose). I will try to summarize it and post a separate thread because it might be a way to get past differences of opinion.
Posts: 8430 | From Not available | Registered: Oct 2000
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Good points! And thanks for offering to summarize. I'm hoping that we will have multiple ways of providing feedback so that no one feels limited by a single perspective.
As for not being a forum for more dissension, couldn't agree more! That's why we will have facilitators - to keep us on a productive course. They know how to draw out less assertuve personalities, how to keep groups focused, how to calm rising emotions,etc.
When we spoke to one of the legislative experts who will present, I got excited when he mentioned potential action within gov. agencies. He said that, where legislation can take years, there are things that can possibly be done through these agencies that would be shorter term. Why not explore these strategies.? I don't see how this could hurt any legislative action taking place, and it might even help!
I was reminded of the letter Rep. Wolf wrote to CDC, questioning their continued recommendation of IDSA guidelines during investigation. I would never have thought of asking him to do that! But we could have been asking all of our legislators to do the same thing! I am eager to hear of other strategies.
One woman I spoke to talked about the success she has had in getting involved in such local organization as Chamber of Commerce and incorporating lyme issues into programs, discussions where appropriate. I asked her to send that idea through our website so that it could be shared. While it is not glamorous or high-profile, it is sowing seeds to develop awareness that can effect change at the grassroots level!
What other great things are happening locally out there that could be used elsewhere? Maybe even a grassroots activism handbook!
As for legislation, I think many of our fears would be allayed if the people who have been working with Congress closely on it would simply respond, when concerns are raised, with information that addresses those concerns. It is the not knowing that breeds fear.
My own feeling is that we need a public hearing to update the Congressional Record. It is my understanding that this can occur at a number of junctures in the legislative process -some more critical than others. They can be public or private. I think anyone in the lyme community would want to have a public hearing that would allow us to define the reality of lyme from a patient's point of view - a very different view from the general medical community! Can we influence the process? How? Those are the kinds of things I hope to learn.
What I am trying to get at is that there is much to learn and discuss - not just the bill.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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bettyg
Unregistered
posted
not to sidetrack this conversation but to add to it ok...
someone i know was sent a note saying our huge outpouring of trying to get a OPRAH...UNDER OUR SKIN/DR. OZ tv show can be used to HURT our 2 lyme bills in congress.
lyme community should know oprah's agenda, that lyme folks have CONTROL over show vs. oprah, that type of thing.
what are your thoughts on that with this forum coming up? we should know anytime SOON what the decision is on oprah's show after they held a meeting last thursday in new york about this!!
now back to 3-28 legislative forum with EVERY ONE WORKING TOGETHER; not different groups attacking one another ... working as ONE TEAM ONLY! thanks.
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