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10/10/2008 01:11 PM

Lyme legislation

tomro62
tomro62  
Posts: 359
Member

Bruce (thost55) brought a posting at another Lyme forum concerning the pending Lyme bill to my attention. This post is proposing that all members of the Lyme community stop the current legislation, in favor of new legislation.

It says that the bill was written by people who are out of touch with the needs and concerns of the Lyme community, and that the wording favors those who would act against the Lyme community. Additionally, it posits that the legislation is "tired" and that new thoughts should have come forward by now. It calls on all members of the Lyme community to call their representatives and stop the Lyme bill, in favor of a new one that would be written by more "diverse voices".

Well, isn't that something?

I'm unsure of how the author reached all these conclusions, but they seem more of an opinion than fact. That's okay, everyone is entitled to an opinion, but not a distortion of facts.

Let's face one fact first...no government - federal, state or local - will ever put forth legislation that is going to make everyone happy...it's government, it's impossible!

I was once told by a wise person, that if two sides are trying to argue something to be one way or another, and a settlement is reached in which neither is happy about the outcome; then the best deal was probably made. I think this would be a good thought to hold for the current Lyme bill.

Here are two more things to consider...this bill could die at the end of this year, but it looks like it's going to be carried over as a lame-duck bill, and ultimately get before Congress. That's a good thing! If this bill were to be tossed out now, do you think any congressman is going to take the time to try and get a new one through, with the condition that our country is in now? I highly doubt it. And, it looks like the biggest supporters of this bill are going to still be in Congress after the elections, so there is built in support for the bill.

I have read this bill many times, and discussed it with my local House Rep and his chief of staff (whose daughter has Lyme disease, by the way). He helped me understand it a bit better, but it is mostly easy to digest.

I can answer specific questions that are posted here, or sent to me on a PM, but I will put out a few items from the bill here.

First, there will be a (voting) committee, which will decided how $20,000,000 a year (for 4 years) will be spent on research, education and prevention, and more money could be made available if needed.

This committee will be made up of non-federal government employees, nor will there be any officers of the federal government on the committee. The voting members will be made up from the scientific community, representing a broad spectrum of viewpoints on Lyme disease; members of tick-borne disease voluntary organizations; at least one full-time practicing doctor who treats Lyme disease; patient representatives who have Lyme disease, or are family members of someone with Lyme, and representatives from State and local health departments. It is to be ensured that the members represent the best diversity of perspectives on Lyme.

A non-voting membership of the committee will be made up of persons from the CDC, NIH, the Agency for Healthcare Research and Quality, the FDA and the Office of the Assistant Secretary of Health. The Assistant Secretary of Health will be a co-chairperson, and the committee members will appoint a co-chair from their membership. Each member will serve 4 years.

So already you can see that the bill sets out to exclude the government from having control over the research money, but the money will go mainly to established government organizations. This is federal money, so you have to expect that. However, money can go to private research as well.

I don't see this as being too bad.

And I'll tell you about another juicy tid-bit that I'm looking in to...there is twice mentioned in the legislation a phrase referring to "chronic Lyme". I'm trying to find out what the implications are of this. If there is a law passed that mentions the need to develop testing to better diagnose "acute and chronic Lyme", does that alone say, without question, that chronic Lyme exists? That's the next question I am trying to get answered.

If that is true, it's no wonder the IDSA is spending money hand-over-fist trying to get this bill defeated...and why Rep. Pallone of New Jersey is trying to hold it up until the review of the IDSA policy guidelines!

Like I said, no bill is going to be perfect, but look at it this way. If this bill is passed, there is $80,000,000 available for research, chronic Lyme should be confirmed, the voice of the Lyme community will be represented on Capitol Hill, and forward progress will be made.

If we trash this bill, what do we have? Nothing.

If anyone has a question about the Lyme bill, post it here or send me a PM. Let's try to keep postings on this string just about the Lyme bill.

Thanks.

Tom

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10/10/2008 01:33 PM
denise17
denise17  
Posts: 281
Member

So are you saying that we should continue to support the current lyme bill rather than a new one?

BTW I appreciate you keeping us informed on this matter as politics are not my thing.

Denise


10/10/2008 01:34 PM
fluffyluggage
fluffyluggage  
Posts: 4722
VIP Member
I'm an Advocate

I think it's a wonderful bill, certainly it has it's flaws, but don't we all? If we can't recognize that something is being done, and everyone start working together to make it happen, then what do we really want? Well, the answer is that we don't really want to be well, we like to suffer, and we want everyone else to suffer with us. Those are just the facts. You can't cut off your nose to spite your face, and that's exactly what we'd be doing if we stopped this now and went back to the drawing board.

I can't help but comment on the fact that as with all things, people are so caught up in fighting that they can't stop and look at the big picture. It's better to be "right" for them than to see something good. And it's better to get the last word than to see what's good for all of us come to fruition. I see that as inherently wrong, when you can't recognize some good come out of a situation that's inherently fraught with politics and other junk. That's just how our situation is, so take the good with the bad, and let it be. Be happy we're getting something, rather than nothing, and stop fighting, so we can get it. Or we're gonna lose that, too. And then we'll all be stuck in the cold.

I'm sorry if anyone finds that to be offensive or bitter, but I honestly have little tolerance for infighting anymore. I've listened to it for too long, and I'm just tired of it. If we don't stop and recognize that we need to stand together, I fear we're going to end up lonely and scared and with nothing. It's not about being right or wrong, it's about getting help.


10/10/2008 02:22 PM
tomro62
tomro62  
Posts: 359
Member

Another good feature of the bill is that it doesn't give research institutes an infinite amount of time to do their work. If no results are seen in a reasonable amount of time, the committee can vote to revoke the money.

And there are side benefits...when a disease gets more "exposure", what happens? Drug companies jump on the bandwagon, private research firms invest some money...they all try to beat each other to the punch. In addition to federal money, you will see a lot of private dollars being invested in the problem. Medical schools will be forced to add more extensive studies to Lyme and associated diseases. And best of all...more docs will start to treat it!

Tom


10/10/2008 03:32 PM
cave76

Tom, I have several concerns or questions but first I want to say that you're right---- there will be no bill that is perfect. It's just the way it is.

Tom reported:----The voting members will be made up from the scientific community, representing a broad spectrum of viewpoints on Lyme disease;

1. members of tick-borne disease voluntary organizations;

2. at least one full-time practicing doctor who treats Lyme disease;

3. patient representatives who have Lyme disease,

or are family members of someone with Lyme,

4. and representatives from State and local health departments.

It is to be ensured that the members represent the best diversity of perspectives on Lyme.

My comments:

1. If a member of a group, say like LDA, (although I'm not too impressed with them but they DO mostly have patients health in mind) is what you mean---- I count that as a good thing. Probably.

2. A full time practicing doctor could be great or disastrous. Dr. S in San Fran would be great. Dr. Steere or similar would be disastrous. I assume there will no way to determine WHICH doctor becomes a voting member?

3. A patient or family member with Lyme would be a plus, of course.

4. My experience with members of state or local health departments (although personally nice people for the most part) have a job that is dependent upon the CDC or ?? for their funding. So, I say, (until convinced otherwise) that they would not be in our best interests.

So--- two out of two. Not great odds, if I were betting.

************************************

Tom reported: *****First, there will be a (voting) committee, which will decided how $20,000,000 a year (for 4 years) will be spent on research, education and prevention, and more money could be made available if needed.*****

A 'snipped' quote from a well known llmd debating with Phil Baker:

"How medical research is conducted.

Funding for medical research studies comes from two main sources:

1. public institutions such as the National Institutes of Health (NIH),

2. and private corporations with a financial interest in the research, notably pharmaceutical companies.

To obtain NIH funding, the study proposal must be reviewed by a group of "experts" in the field.

And who are the NIH "experts" who review Lyme studies? [snip] "Lyme denialists" [snip].

An alternative funding source is the pharmaceutical company developing a blockbuster antibiotic to treat a serious emerging infectious disease."

If I'm off on the wrong track, Tom, please let me know. To make it clear, I'm almost neutral about the bill. Of course I want something passed for our good. But the wording of all the bills has me a tad worried.

Two other concerns:

The IOM (Institute of Medicine)

The Lyme Disease Advisory Committee


10/11/2008 07:34 AM
tomro62
tomro62  
Posts: 359
Member

Cave,

I understand what you are saying, but you are defining things, where there is no definition.

First, you mentioned choosing a doctor on the committee could be disastrous, but not necessarily. There has to be at least one doctor, but there can be more than one. And most likely, to get the best representative feelings on Lyme, you will have doctors from both sides of the argument. There has to be give and take. It would be unfair to put only IDSA docs on the committee, just as it would be unfair to put only ILADS docs on the committee.

The role of State and local health departments will be limited to education and prevention, not research. When have you heard of any of them receiving money to research any disease?

And I do believe I mentioned in my first post that it will have to be accepted that federal money will be spent in federal institutions, like the NIH. There is no getting around it. But it is not the NIH giving the money away. The money will go to the researcher working at NIH. As it was explained to me, NIH would have to propose their study to the committee, and the committee would vote on whether they get the money or not. That is why there are no government employees on the voting committee.

It's not perfect, no, I would never admit to that. But it's more controlled than just giving all $20,000,000 to NIH and big pharma and saying, have at it.

I am unsure of what wording in the bill has you worried, so I cannot comment on that.

Tom


10/11/2008 09:38 AM
PegB
Posts: 197
Member

Thanks, Tom, for your research and your information. I am just too sick and angry at the current "state of affairs" at this time to get too involved---maybe when I'm better? But I appreciate the folks, like your, who do.

10/12/2008 10:56 AM
cave76

Tom,

After the bill is passed (thinking positively here <g>Wink would the next step be to Appropriations? Or has it already gone through Appropriations?

What I'm asking----- where does the $20 million come from?


10/12/2008 05:45 PM
tomro62
tomro62  
Posts: 359
Member

The bill authorizes the money, period. By becoming law, the money is available in order to enact the law.

You have to know how appropriations work, which is in two ways; through discretionary funds and mandatory funds.

Congress controls discretionary funds, mainly in the form of parts of the federal budget; national defense, the cost of running the government, etc.. Congress has very little control over mandatory funds, because they are the result of previously enacted commitments in authorization law.

If you pass a law saying there is "X" numbers of dollars needed for it, then Congress must appropriate the money, period. If they don't want the money committed, then they defeat the bill, so that it doesn't become law.

I believe the total Lyme bill is worth $100,000,000 dollars. $80,000,000 is for $20,000,000 a year for 4 years of research, education and prevention, and the rest is for the cost of running the committee, and for any cost overruns. They may committ $20,000,000 a year to research, but if a promising project comes up, there is a little extra there, just in case.

Tom

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