Comments About The Bill- Random

NOTE- Before jumping on the band wagon or providing support for The TICK Act, please try reading the bill to see who will be the key person in charge of this mess if it passes, and its other infamous players- same old same old- and take a look at where the money- millions more- would be going.

I'm sorry, I can't believe how anyone who has read this bill and understands Lyme and its politics could support it.

https://www.congress.gov/bill/116th-congress/house-bill/3073/text?r=24&s=1

10/28/19

Comments- LB

To me, this bill looks like it was written by the CDC/IDSA/State Health Departments or copied from their same old, same old wording. It has the HHS Secretary as lead, with many of the same government agency people involved, similar to what we now see on the TBDWG and elsewhere, where we are grossly underrepresented.

In the event we could force our way into the bill's directives (be a part of it) with our existence being only the slightest of mention in the bill, the language only states we "MAY" be included, not MUST- and I'm betting you know what that means. That dog don't hunt.

It is also a combo bill with vectors and their diseases being addressed by the people appointed to this new oversight cabal, not just ticks and their diseases being studied. For example- they are calling for more funding- in the millions- for regional centers of excellence which have supposedly been in existence for a while and need more funding to do what I've yet to see in any way helps any of us. More good tax-payer's money dumped down the sewer.

Another example- one, at least one- I didn't check them all yet- of these centers getting funding focuses on mosquitoes, not ticks or TBD's. The bill is saying the agencies will do what is already being done to burn our biscuits, which as we know is a huge problem. Just look at the supposedly good set up for the TBDWG that the HHS Secretary & these same government agencies developed that tried to include Wormser, and has included Shapiro and other dead heads even after thousands of patients and groups objected. Note too- we only have ONE patient group rep and no patient reps in the TBDWG, which is NOT the way it was suppose to be.

This bill, if it passes, puts into stone (law) the same things we've been fighting against for several decades.

It's as if all we've accomplished will be wiped out and we would have to start all over again fighting an even stronger foe that we (ourselves) created by passing this bill.

It also states that they will implement "evidence-based practices", aka no more choice other than IDSA/CDC/NIH. And they will work on vaccines, etc.

It states the government agencies shall enter into cooperative agreements blah blah blah, and kiss themselves fondly each pay day for destroying so many lives (ok it doesn't say that, but it is close), blah blah blah. Again, these same people will be doing BY LAW what they already do if this bill passes. The IDSA & CDC will be in hog heaven if this bills passes.

It also says the same government agencies will decide "the manner in which the applicant (for grant money) will evaluate the effectiveness of any program carried out under the cooperative agreement.” In other words, they make up the rules they want to follow, give the money to themselves, and then rate how well they are doing based on their own say so. There is more, but I've run out of steam. Hope this helps.

10/28/19

Questions & Answers

Sorry I have to respond in this format. It is because there are many points to address and because I am tired.

You said... " i understand you’re concerns about the bill but I don’t understand how it would put into stone everything we have been fighting for?" Please reread my comment. It says it would put into stone (solidify, make permanent) everything we've been fighting AGAINST. We surely don’t want that to happen.

You said…"It is certainly not perfect and there are many issues, but unfortunately that is politics.” It ONLY became “ politics” when someone wrote it out and submitted it, so excusing a bad bill using that reasoning is not what we should ever do. And… It may be acceptable to pick the second best rose off of a bush to give to a small child in need of cheering up, but it is not at all acceptable to even slightly compromise our health, our years of work, our progress and our fight to get a cure by compromising sick patients, our doctors, our advocates and organizations. If it is to become a law, which is why people put in bills and what we must consider because we and our future generations will be negatively affected by this, it must be ONLY helpful for our cause. This bill has nothing I can see that would benefit us and/or make positive changes for all who are suffering.

You said… "A friend has been in touch with Senator Collins deputy and there is language regarding patient advisory committee.” Can you please show me where that language is and what a “patient advisory committee” would do regarding this bill or how it is even related? Plus, we all need to remember- politicians don’t always tell the truth, or have our best interests at heart.

You said… "We all know that the TBDWG isn’t perfect and the latest iteration is far worse than the first, but my fear is no bill/ no money.” What good is all the money in the world going to do us if it continues to go to those who have a long history of fighting against all of the true research and our patients ability to be properly diagnosed and treated for chronic Lyme and TBD's? This oversight committee outlined in the bill consists of those who are doing us wrong already- so it’s more of the fox guarding the hen house. This is not what we need, not at all.

You said… "Private funding can only fund so much and right now the only research being done is through private organizations.” Actually, that is not correct. The BEST research is often being done through private organizations, but each year there are millions of dollars spent on TBD research. Again, if we add to the millions already being spent so more money that goes into the wrong hands, what good will that do us?

You said… "I’m interested in the 10 bills you are working on. Are you drafting them for various states? Federal level?” If you are, as you stated, well aware of the politics of Lyme, you would know sharing that kind of information publicly would be problematic and give those working against us a head’s up. Sorry I can’t discuss details here, but if you have any questions about what I did and have been doing for the past several decades concerning Lyme/TBD and federal/state legislative bills you can scroll through this site that has some of the work I’ve been doing. (Will post the link below for you.)

You said… "I also believe it is easier to effect change once something is recognized and right now we need TBD to be recognized by all entities.” Please show me what government agency cited in this bill hasn’t recognized Lyme disease.

You said.. "Once the funding is there it is easier to direct it.” Actually, that isn’t correct either. It has proven be be near impossible to get good, honest researchers and our doctors the funding needed (from the pot already there) after decades of trying.

You said.. "There are many researchers who are trying to do good work but hindered by funding. Perhaps this may provide assistance?” No. It will feed the bellies of those who are continually writing inaccurate study results, rushing to get patents, rushing to make vaccines they have patents on, and those who have been sucking down all the government funds all these years. It would be like paying children to continue to do bad things.

10/23/19

While Promoting the Bill This Statement Was Made

"If you reside in North Carolina, South Carolina or Indiana, we desperately need you to call your Senators and strongly urge them to co-sponsor the TICK Act. This needs to be done within the next 7 days in order for the bill to be considered."

Considered by who and why 7 days?

Last Updated- October 2019

Lucy Barnes

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