Senate Bill Disaster- 2019
Senate Bill Disaster- 2019
My Note
The original Senate bill was eliminated.
A new (bad) bill that won't help us was submitted to take its place.
And the Lyme Community continues to support it.
I am assuming this bait and switch was orchestrated by the same ones who have tried to destroy all bills we've ever had- the IDSA &CDC- because the wording in this new bill will not help our Lyme patients, our treating doctors or our scientists and researchers.
THIS IS WHY WE DO NOT WANT PEOPLE PUTTING IN BILLS!
THEY DO NOT HAVE THE KNOWLEDGE AND/OR EXPERIENCE TO PREVENT THIS FROM HAPPENING AND DO NOT HAVE THE ABILITY TO FIX THE SITUATION WHEN IT DOES!
November 20, 2019
TO: Advocates/Patients
FROM: Lyme Disease Association, Inc. Pat Smith, President, 11-20-19
RE: Urgent & Immediate Help Needed
(Click for easy Steps to Take or See Below)
ISSUE: On October 31, the Senate Tick Act (Collins, ME) was passed out of the Senate HELP Committee; however, it was a different bill than the one that was originally submitted to the Senate Committee that many Lyme groups supported. The HELP committee replaced it in its entirety with a Manager’s Amendment, submitted “in the nature of a substitute,” which still keeps the same bill number, S-1657, and it was renamed the Kay Hagan Tick Act.
The Senate bill has always been a vector-borne disease bill, meaning that mosquito-borne diseases such as Zika and West Nile virus, as well as other vector-borne diseases, are included and eligible to receive monies.
There were safeguards in the original Senate bill that would have ensured that Lyme received the funding it warrants, for example, monies would be allocated proportionately according to disease burden in the US. Those safeguards have been removed.
The LDA was not aware of the bill substitution and now has been urgently working to assess−before it goes to the full Senate− what these significant bill changes mean, and the potential impact on what the bill does.
Explanation of Tick Act Changes From the Lyme Disease Association & How To Help
LDA ASSESSMENT & ACTION: We need to take several actions to try to minimize the impact of the changes on the Senate bill.
LDA is working with Senator Susan Collins’ office and with Congressman Chris Smith’s office to try to rectify this language situation to provide necessary safeguards to ensure Lyme will get its appropriate share of the funds that are included in this new Senate bill.
WHAT CAN BE DONE BY YOU: The House version of the Tick Act, HR3073 (Smith, NJ) retains the original language that the Senate bill used to have.
We want to ensure that the Smith House version of the Tick Act gets more co-sponsors so we have another possible route to passage. We need your help now with the action below.
ACTION FOR YOU TO TAKE: We have provided the list of current co-sponsors of the Smith House bill, HR 3073, below, which contains the original Senate language. If your Congressman/woman is NOT on the co-sponsor list, we need you to contact him/her immediately.
Step #1: Click here to review the current list of co-sponsors of the HR 3073, Tick Act, in the House of Representatives. If your Congressperson is NOT on the current co-sponsor list:
Step #2: If you DO NOT see your congressperson’s name on the list above, please visit this websiteto locate his/her contact information, and then:
LINKS TO THE TICK ACT BILLS:
To see the House bill, HR 3073, Tick Act, click here.
To see the original version of Senate bill, S-1657, click here.
To see the new version of Senate bill, S-1657/Kay Kagan Tick Act, that was passed through the HELP Committee, click here.
Thank You!
Link Here
https://lymediseaseassociation.org/government/federal-government/the-tick-act-needs-your-help/
LDA Announcement
November 20, 2019
Explanation of Tick Act Changes From the Lyme Disease Association & How To Help
On October 31, the Senate Tick Act (Collins ME) was passed out of the Senate HELP Committee; however, it was a different bill than the one submitted to the Senate Committee that many Lyme groups supported. The HELP committee replaced it in its entirety with a Manager’s Amendment, submitted “in the nature of a substitute,” which still keeps the same bill number (S-1657), and the name was changed to the Kay Hagen Tick Act.
The Tick Act bill is NOT and was NOT ever a specific Lyme & tick-borne disease (TBD) bill.
It is a vector-borne disease bill, meaning that mosquito-borne diseases such as Zika and West Nile virus as well as other vector-borne diseases are included and will get money.
However, there were safeguards in the original bill that would have made clear in the bill’s intent that it was focused on Lyme/TBD. Those safeguards have been removed.
The LDA was not aware of the bill substitution and found out almost a week after passage through committee and has spent time assessing the impact and weighing actions to take.
The new bill substitute will now be presented to the full Senate & its new language will have a significant impact on what the bill does.
1. Language in original Bill: In the 2 authorization of monies sections, the bill says: “amounts appropriated shall be allocated under this section to diseases in a manner that proportionately matches the disease burden of these diseases in the US, which shall be reassessed and adjusted annually.”
The language above in quotes was removed in both areas of the new bill substitute.
• Purpose of Language: “Burden of disease” means the amount/impact of each disease covered by the bill. The higher the disease burden, the more money it would get—annually reassessed.
The language was a safeguard we had put in to ensure Lyme disease received the share of the monies it deserved. For example, in 2017, Lyme had 42,700+ CDC reported cases, (427,000 if number adjusted for underreporting by a factor of 10).
None of the other diseases were even close but Lyme could receive less money, depending on the strength of their lobbying/connections they have.
• Problem: The major safeguard for Lyme getting an appropriate share of monies has been removed.
Zika and West Nile, which have received disproportionate funding for years, could get a large percent of the monies as could lesser burden tick-borne diseases.
• Included in the language removal above is the phrase “diseases in the US.” Removing that has opened the door to monies going toward other vector-borne and tick-borne diseases outside the US, including for vaccine studies, something which has already occurred in other government programs, while US TBD continue to suffer from lack of funding.
2. Language in original Bill: The word Lyme was included 30 times in the original bill.
The word Lyme appears once in the new bill substitute, in the one line purpose.
• Purpose of Language: The repeated use of the word Lyme provided an emphasis on that disease and bolstered the intent of the original legislation. It was primarily a Lyme bill.
• Problem: “Lyme” now only appears in the one line, Purpose, which is not included in the body of the bill so does not really carry the weight of the bill.
In some places where “Lyme” was removed, it was replaced with “vector-borne diseases, including tick-borne diseases.”
3. Language in original Bill: Original bill designates a section “National Strategy and Regional Centers of Excellence in Tick & Vector-Borne Diseases.
New bill substitute designates the section “National Strategy and Regional Centers of Vector-Borne Diseases.”
Purpose of Language: The addition of “Tick and” to the Centers’ title reinforced the intent for the Centers to address Lyme and tick-borne diseases.
Problem: These Centers of Excellence have been in existence since 2017, not established through legislation−the purpose has been primarily vector-borne diseases, i.e., mosquito-borne diseases.
The centers would now be “codified” through this legislation, which has no safeguards for distributing monies through the burden of disease nor does the bill even have a strong “intent” toward Lyme disease.
Also, the original bill included under the Centers’ section-specific strategies to address Lyme/TBDs, strategies which would help to solve the problems of the past.
Now only general strategies applicable to VB are included.
Although there are other changes, we are trying to have the main safeguard for Lyme funding to be put back in the Senate bill, in particular, the phrase “amounts appropriated shall be allocated under this section to diseases in a manner that proportionately matches the disease burden of these diseases in the US, which shall be reassessed and adjusted annually,” or a comparable safeguard(s).
That can be done if the bill goes to the floor of the Senate where amendments can be offered.
However, we understand this bill is being “hotlined,” called up to pass without a vote, by unanimous consent, unless a Senator objects.
We are working with Senator Collins’ office to try and reinstate safeguards for Lyme into the Senate version.
ACTION NEEDED NOW!
We are continuing to work with Congressman Smith’s office since the House of Representative’s version of the Tick Act, HR 3073 (Smith NJ), still contains ALL the safeguard language that the original Senate bill had in it but which has now been removed by the Senate.
We want to ensure that the HR 3073, Tick Act, gets more House co-sponsors on board so that we have another possible route to passage of the Tick Act.
We need your help now to get more co-sponsors on the House bill, HR 3073. Click HERE for actions you can take to call your Congressperson.
LINKS TO THE TICK ACT BILLS’ LANGUAGE:
To see the House bill, HR 3073, Tick Act, click here.
To see the original version of the Senate bill, S-1657, click here.
To see the changed version of Senate bill, S-1657, Kay Kagan Tick Act, that was passed through the HELP Committee, click here.
Link Here
Below is an explanation posted on the LivLyme Foundation as to what happened with the Senate bill. It was written by someone from the Center for Lyme Action.
I do not agree with much that was written below.
It is trying to smooth over the problem, is not being transparent and is not always truthful, and is not providing all of the facts.
Your Help Still Needed: TICK Act Update
By Jeff Crater
Why hasn’t the TICK Act passed yet? And why is the Senate bill different from when we started? Isn’t there another bill in the House? How about the funding levels? Is the TICK Act still a good bill? Should I still contact my Senator? How do I stay updated on the TICK Act?
These are the questions that the Lyme community is asking now. Let’s take these on one by one.
(IT WAS "MARKED-UP" MEANING APPROVED TO MOVE FORWARD, NOT "PASSED".)
(NORMALLY IT WOULDN'T NEED FULL SENATE SUPPORT, BUT THE WAY THIS WAS GERRYMANDERED AROUND IT NOW WOULD REQUIRE IT TO PASS.)
(WE DON'T NEED A BAD BILL GOING TO THE HOUSE.)
(BECAUSE IT WAS REMOVED AND REPLACED WITH A WORSE BILL THAT WILL NOT HELP OUR SITUATION.)
(YOU DON'T CHANGE A BILL THAT AFFECTS LIVES TO PLEASE POLITICIANS- THAT'S NOT WHAT BILLS ARE ABOUT, ESPECIALLY WHEN IT ALSO DOESN'T HELP PEOPLE AND/OR HURTS OUR PATIENTS.)
1. (HOGWASH! FOR EXAMPLE- IN 2018 SENATOR COLLINS- THE SAME SPONSOR AS IS ON THE TICK ACT BILL- GOT A DISEASE SPECIFIC BILL PASSED- SEE LINK HERE. A BILL DOESN'T HAVE TO BE "NON-DISEASE SPECIFIC" TO PASS.)
2. (THE FUNDING WAS NEEDED TO CONTINUE SUPPORT FOR THE CDC'S VECTOR-BORNE CENTERS FOR EXCELLENCE. AS YOU CAN SEE THEY DO NOT FOCUS ON LYME DISEASE AND THE WAY THE BILL IS NOW THEY STILL WILL NOT FOCUS ON LYME.)
(ONLY ONE SENATOR WOULD NEED TO SAY NO AND THE BILL WOULD BE DEAD. SEE THE DEFINITION OF UNANIMOUS CONSENT.)
(THE MOST IMPORTANT PROTECTIONS WERE REMOVED FROM THE BILL SO IT IS NO BETTER FOR US THAN GETTING AN EMPTY CANDY BAR WRAPPER AND EXPECTING IT TO HELP US.)
(DO NOT SUPPORT A BAD BILL IN THE SENATE JUST FOR THE SAKE OF GETTING SOMETHING PASSED. FORGET THE SENATE BILL.)
(ABSOLUTELY NOT. WHY PASS A BAD BILL?)
(SUPPORTING & PASSING THE SENATE BILL NOW WILL ASSURE IF ANY MONEY IS DEDICATED TO VECTOR BONE DISEASES IT WILL GO TO THE WRONG PEOPLE FOR THE WRONG DISEASES- EXACTLY WHAT WE ARE TRYING TO PREVENT.)
(IT IS CERTAINLY NOT A 1ST, AND IT CAN'T BE A MAJOR STEP FORWARD FOR US IF IT IS DOING EXACTLY WHAT WE DON'T WANT IT TO DO.)
(AS MARK TWAIN SAID- NOBODY LIKES CHANGE EXCEPT A WET BABY. CHANGES ARE NOT ALWAYS GOOD AND THAT IS THE CASE HERE.)
(IT COULD BE 45 BILLION DOLLARS, BUT WHEN IT GOES TO THE WRONG PLACE AND FEEDS THE BEAST, IT IS NOT GOOD FOR US.)
(DON'T FEED THE BEAST!)
(DON'T LET A BAD BILL GET THIS FAR. IF IT DOES, IT WILL ONLY HELP THE BAD BOYS WHO ARE FIGHTING US.)
(THE NATIONAL STRATEGY IS ALREADY BEING DEVELOPED IN THE TICK BORNE DISEASE WORKING GROUP, SO THIS DOESN'T HELP US.)
(IF ANYONE THINKS A SINGLE (BAD) BILL WILL DROP KICK THE BAD BOYS HARD ENOUGH TO GET THEM OUT OF OUR WAY SO WE CAN MAKE POSITIVE CHANGES, THEY ARE SADLY MISTAKEN.)
(FEEDING THE BEAST.)
(GIVING THE KEYS TO THE HEN HOUSE TO THE FOX.)
(NO. DON'T BOTHER, DON'T WASTER YOUR TIME OR ENERGY. THE BILL IS BAD AND I DON'T BELIEVE THERE IS ANY WAY WE WILL HAVE THIS BILL PASSED. AND IT DOESN'T HELP US AT ALL.)
(THEY LISTEN ONLY WHEN IT ADVANCES THEIR OWN AGENDA.)
(THOSE PUSHING AND SUPPORTING THE BILL SHOULD BE KEEPING TRACK OF THE BILL ON A DAILY BASIS OR MORE. THEY SHOULD ALSO BE TRANSPARENT AND ADVISE PATIENT IMMEDIATELY WHEN THERE ARE CHANGES.)
Working together, we can influence the federal government to advance research and other key programs for Lyme disease. Let’s do it!
Jeff Crater, of Falls Church, Virginia, has two children with Lyme disease. He is a co-founder and board member of Center for Lyme Action. Find me on Twitter @lyme_action.
The first document below is for senators. The second one is for representatives. Please fill in the text where indicated, print, and send to your senator and representative.
Last Updated- November 2019
Lucy Barnes
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