poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Can understand why another bill is not needed, but it sounds like you are supporting CDC and other misinformation on the subject. I don't see the point of this. The CDC is wrong.
Posts: 2888 | From USA | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If anyone has something to say about Maryland Lyme Legislation, please do it publicly or I'll do it for you. Thank you.
Why on Gods earth would you oppose this bill tomorrow? Your reasoning is both immature and senseless. Your ignorance and fragile personality is putting many people and Dr's in danger. Please be known that you are not a spokesperson for me or the support group I attend
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Poppy,
Yes, I see no need either for a bill to do what has already been done. That is a waste of time and money.
I also agree with you that the CDC is wrong, dead wrong.
But, that doesn't mean I should create a bill- which then becomes a law that stands on the books forever- containing information that can put us in a position to be attacked by countless individuals and government agencies as being false.
For example- in this bill it says -
"Increasing numbers of new cases of Lyme disease are reported each year in Maryland". That is NOT true according to the officials- in this case the officials are the Maryland DHMH and the CDC.
Unfortunately, legislators don't listen to Tincup's or Poppy's opinions when facts must be verified. They listen to the "officials"... and if we are proven wrong- even if the CDC is wrong with their information - it looks bad on us.
Those agencies have figures and reports in their hot little hands stating Lyme disease is NOT increasing here, it is decreasing.
According to the "official" figures, Lyme disease reported cases have dropped in Maryland in just the past four years to less than 1/2 of what they had been.
Do I believe that hooey? No. Can I prove what the CDC says is false? No.
If I tried to get away with putting in questionable information - even if I believed it to be true- it would only go to show the legislators and officials that I am not credible, not truthful, not informed, and as a result that would look bad on the entire Lyme community, now and forever, amen.
The bill could have stated, for example ... "Reported cases of Lyme disease have steadily increased in Maryland and the United States since Lyme disease was first reported in the 1980's."
Now that IS a fact that we can ALL agree on, and that can be proven using "official" figures.
If the bill wording isn't carefully fact checked, anyone could make a law stating broccoli is dangerous, or cars can't be driven on Saturdays. How far would "falsehoods" or unproven facts be allowed to go?
We must all try to make laws (bills) to be as true and accurate as possible, and ONLY make laws that are necessary. Because...
If we ever REALLY needed a bill to help us with important issues, like let's say 5 years from now...
And the legislators who sponsored that bill were attacked by government agencies because of the bad wording and questionable facts - and they are getting ready to be tomorrow - what are the chances of us ever getting a bill we REALLY need?
Zilch.
Hope that helps explain the situation. The bill wording simply needs to be more accurate, IF the bill would be necessary, so a good thing doesn't turn bad and hurt us.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
To listen to today's hearing...
NOTE- The Committee hearing is scheduled to start at 1:00 PM today. There are a number of bills to be heard, so the Lyme bill hearing could be at any time from 1:00 PM forward.
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To listen to the hearing today on the Lyme Disease Awareness Month bill - HB 1168- Click here.
Click on "View House Committee Meeting" on top center of the page.
Look on left side of page. Click on "2012 Health and Government" folder. (You may be asked to install newest version of software. It should only take a few minutes.)
See the page number selection bar near the top of this page. Looks like this.
Go to page 2. Page: of 2
Scroll down to the FIRST date that says March 6, 2012 and click on it.
I was told this would work by legislator's office.
posted
Lyme witness " Told Committee that mosquitoes are carrying it now."
Whaaaat ?
I guess I should expect that the sausage factory is filled with crazy statements... but whaaaat?
Tincup- I don't pretend to know all the ins and outs of the Maryland legislature. But I agree with your argument. The wording of the bill was straight up false with regards to CDC data. And that does not help our cause AT ALL!
We all know the CDC is of little help to the Lyme community. But accuracy matters with regards to the dominant medical authority in the land, period.
ESPECIALLY in legislative matters.
Thanx for the info!
Posts: 65 | From oregon | Registered: Jun 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hammond said... "But accuracy matters with regards to the dominant medical authority in the land, period. ESPECIALLY in legislative matters."
THANK you hammond! You got it! Exactly!
There are a number of "fact checker" groups that look for facts to be wrong in bills and use that information against the ones submitting and supporting that bill. The President, for example, has been beaten down for this very thing.
Our reputations are only held in tact when we are factual (even when we don't like the facts), which in turn makes us credible. Sloppy wording may be just sloppiness, not intentional at all, but wrong is wrong and it needs to be right, OR, don't use it.
Two years ago these same people supported 3 bills they helped with - two of the bills by the same legislators in this one- and they were not good at all.
EVERYONE- including ILADS, LDA, numerous other groups, health dept, Board of Physicians (medical board), and patients were all expressing their opinions against these bills and instead of fixing them... the one sponsor who is currently on this bill- her office- said in an email...
"We want the bill to pass. We cannot let the perfect be the enemy of the good."
To be honest, that makes me sick.
In my opinion, when it comes to health matters (our own and our kids and future generations), trying to pass over on the public anything less than "perfect", something you know isn't right, is totally unacceptable.
I heard someone (maybe 2 someones) mention they would/could refute what was pointed out to be wording inaccuracies in this latest bill.
The problem with that is the government health agencies feel the highest authority in the land on health issues is themselves (Dept of Health and CDC), so unless the ones attempting to do this are looking to the heavens for some divine intervention, their arguments may not go too far.
My thought is our government agencies may have already pointed out the problems in the wording too, they usually do. So this bill has made us an open target for attacks now... and if it passes, in the future too.
And you have to ask why would the Governor sign a bill that "requires" him to do what he is already doing, especially knowing the bill wording is not accurate and he could be attacked for it? I would think he has to support HIS government agencies.
Plus he already has a boat load of commemorative bills on the table, so will probably not be too quick to jump into a gator pit by signing this one.
Anyhow, if it passes, it passes. At the least, many people looked at it, studied it and gave their opinion about it.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This is off topic, but interesting maybe to some?
Personally, as a history buff and an admirer of Harriet Tubman and her accomplishments, I like the Harriet Tubman Day bill- but not sure why an "emergency" version was submitted too? As far as I know, slavery has already been outlawed.
The Lyme bill sponsors are the ones sponsoring or cosponsoring the regular and the emergency Harriet Tubman bill too. Maybe they just forgot slavery was outlawed, like they forgot we already have May designated as Lyme Disease Awareness Month? Can't win them all.
JUST KIDDING. I am sure there is a good reason the Harriet Tubman emergency bill has been submitted along with the Harriet Tubman regular bill and the Harriet Tubman statue bill, etc.
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25 commemorative bills were submitted this session in Maryland.
There are 1,459 total House bills and 1,092 Senate bills up for consideration. That makes a grand total of 2,551 bills, not including resolutions that were submitted in both the House and Senate.
Some bills have House versions and Senate versions. The Lyme bill only has a House version.
Commemorative Bills
**House Bills**
German-American Heritage Month
Juneteenth National Freedom Day
Sickle Cell Anemia Awareness Month
Maryland Centenarians Day
Young Heroes Day
Prescription Drug Take Back Day
Commemorative Days - Crime Victims and Advocates
Saint David's Day
Harriet Tubman Day- Requiring the Governor annually to proclaim March 10 as Harriet Tubman Day.
Harriet Tubman Day- Requiring the Governor to proclaim March 10, 2012, as Harriet Tubman Day; and making the Act an emergency measure. SECTION 2. AND BE IT FURTHER ENACTED, That this Act is an emergency measure, is necessary for the immediate preservation of the public health or safety, has been passed by a yea and nay vote supported by three-fifths of all the members elected to each of the two Houses of the General Assembly, and shall take effect from the date it is enacted.
Lyme Disease Awareness Month
Statue of Harriet Tubman
Gift of a Statue of Harriet Tubman to the United States Government
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**Senate Bills**
Young Heroes Day
Irish-American Heritage Month
German-American Heritage Month
Maryland Centenarians Day
Commemorative Days - Crime Victims and Advocates
Juneteenth National Freedom Day
Harriet Tubman Day
Harriet Tubman Day
Statue of Harriet Tubman
Gift of a Statue of Harriet Tubman to the United States Government
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thank you to everyone who took time to carefully review HB-1168, a commemorative bill to have the Governor of Maryland declare May as Lyme Disease Awareness Month, and those who voiced an opinion on the matter.
FINAL UPDATE- On March 24, 2012 the House Committee (Health and Government Operations) unanimously voted HB- 1168 "unfavorable" after considering opinions both for and against the bill, and holding a hearing on the matter.
To review some of the reasons why we objected to this commemorative bill and its wording:
Again, we ask that if anyone has an interest in working on a Lyme-related bill, PLEASE let Maryland Lyme patients and their families, doctors and Maryland support groups know about efforts being made on their behalf in advance so they can consider the legislation and have adequate time to have a say in the matter prior to a bill being submitted.
The Lyme Disease Education and Support Groups of Maryland have been closely following and responding to both state and federal legislation for over a decade.
As a result we continue to have a good working relationship with our representatives.
We will be happy to assist interested parties with designing a solid, useful bill for Maryland IF the political climate is right, and IF it is a bill that is absolutely needed- a bill (law) that would benefit Lyme patients now and those who will contract Lyme in the future.
To learn more about our efforts over the years (1999 and forward) and stay informed of legislative updates, please visit the Maryland Lyme Disease Legislation website.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I think it is a shame that people with the same ultimate goals are not working together to improve the lyme situation in that state. No wonder the bill was defeated, having puzzled the legislators about what should be done.
My impression is that the intention with this bill would have been to raise the profile of lyme and educate legislators and the public.
Remember that legislation is sometimes compared to sausage making. We are not going to change that process; we have to work with it.
Posts: 2888 | From USA | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Poppy said...
"I think it is a shame that people with the same ultimate goals are not working together to improve the lyme situation in that state."
I agree! Too bad some folks don't let everyone know what they are doing so these things could be avoided.
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Poppy said... "No wonder the bill was defeated, having puzzled the legislators about what should be done."
Your are right! Even the cosponsor (Penya- Melnek), the ONLY cosponsor, voted to not let the bill move forward in Committee.
That is why, in a unanimous decision, HB 1168 wasn't passed out of Committee.
``````````````````````````````````````````` Poppy said... "My impression is that the intention with this bill would have been to raise the profile of lyme and educate legislators and the public."
Since we already have May declared as Lyme Disease Awareness Month, when we need a reaffirmation in writing I just make call to the Governor's office- five minutes at most- and they print up a beautiful document for us that we can promote as needed.
The Governor's staff members have been very accommodating and supportive of our efforts over the years, so there really isn't a need for a law that "requires" them to do what they are already so willingly doing.
``````````````````````````````````` Poppy said... "Remember that legislation is sometimes compared to sausage making. We are not going to change that process; we have to work with it."
That is the reason why bill sponsors and supporters must know their topic inside and out, and be absolutely sure their "sausage" passes the GOVERNMENT'S sniff test BEFORE their bill is submitted, or be prepared to amend it when concerns are raised.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Poppy...
To be sure you know that in spite of the occasional bill situation, usually promoted mainly by those outside the State, our Maryland groups and individuals ARE working together to improve the Lyme situation here, and have been for years.
Some of us also work closely with advocates on legislative actions/issues in other states, and are invited to provide advise based on our knowledge and experiences. We are more than willing and actually honored to help.
And I must say you couldn't ask for a more wonderful, hard working, dedicated group of volunteers than we have here- many having devoted their lives to helping others.
For being as sick as they are, the amount of work they have done is incredible and I love them all for it. There is a partial list on the Maryland Lyme website that lets people know what our Maryland volunteers have been doing. (See links below)
We also provide the Maryland Lyme Legislation website- possibly the only state site of its kind in the country (?)- with its only purpose being to provide everyone with a detailed history and regular updates concerning Lyme-related legislative actions affecting our State's residents.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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