Tick Act- S1657
Before & While Bill Was Being Changed to the
Kay Hagan Tick Act
The bill in it's original form was nothing to write home about. The situation was made even worse when it was eliminated and a new, even worse bill, took it's place. That bad bill is now a law and because of a few people we are stuck with it.
On this page, you can see the original bill was crossed out totally, and underneath it the new bill was substitued in its place.
The original bill had the word "Lyme" in it 32 times. The replacement bill had no mention of Lyme disease.
The people pushing for this bill wanted the bill to pass no matter what it said. They did not inform other Lyme community leaders or patients what had happened and sadly, continued to promote it as a good thing.
They also purposely deleted posts that were describing the problems with the bill so others reading about it wouldn't know of the changes. (Paula Jackson Jones and LivLyme Foundation were two who hid the changes from us.)
Deceiving patients and others is not acceptable, especially when taking bows during and afterward and while claiming it was a good bill when they knew it wasn't.
These people put our lives, our health and the futures of anyone who gets a tick borne disease in the future in jeopardy.
STOP PLAYING WITH POLITICIANS!
NO bill is better than a bad bill!
Congressional Record- S-1657
May 23, 2019
116th Congress, 1st Session
Issue: Vol. 165, No. 87 — Daily Edition
By Ms. COLLINS (for herself, Ms. Smith, and Mr. King):
S. 1657. A bill to provide assistance to combat the escalating burden
of Lyme disease and other tick and vector-borne diseases and disorders;
to the Committee on Health, Education, Labor, and Pensions.
Ms. COLLINS. Mr. President, I rise today with my colleague from
Minnesota, Senator Tina Smith, to introduce the TICK Act. This stands
for Ticks: Identify, Control, and Knockout Act. I would also like to
recognize my colleague from Maine, Senator King, who is joining us as
an original cosponsor.
Our bipartisan legislation would provide local communities and States
with the resources needed to help prevent, detect early, and treat Lyme
and other tick-borne diseases.
Tick-borne diseases like Lyme have become a major public health
concern, with the incidence exploding over the past 15 years. The
number of Americans with tick-borne diseases has been rising at an
alarming rate. In 2003, Lyme disease infected approximately 30,000
Americans. Last year there were an estimated 450,000 cases--a
staggering 1,400-percent increase.
In Maine, last year alone, there were 2,000 new cases of Lyme
disease. That is a sharp increase from the 752 cases in 2010.
Other tick-borne diseases are also on the rise. Anaplasmosis, for
example, has more than tripled.
Far too many Americans with Lyme disease experience a complex
diagnostic odyssey that takes months or even years. One of my
constituents, Paula Jackson Jones, from Damariscotta, ME, shared with
me her harrowing tale that took 2 years, scores of tests, and 23
different physicians before she finally received the correct diagnosis
that she had Lyme disease. Her journey started one afternoon 10 years
ago after raking leaves in her backyard. A week later, unusual symptoms
began to appear: anxiety attacks, pain, muscle spasms, and fatigue.
These symptoms became debilitating.
Before receiving the correct diagnosis, Paula was diagnosed
incorrectly with multiple sclerosis, Parkinson's, and other diseases.
Once she finally received the proper diagnosis and treatment, Paula
founded Midcoast Lyme Disease Support & Education, a nonprofit that
raises public awareness about Lyme disease.
She told me:
This has been a 10-year crusade for me with the first 5
years fighting for my life and the latter, fighting on behalf
of others.
In addition to the physical and emotional toll that Lyme disease
takes, it is also expensive. Paula is still paying off more than
$250,000 worth of medical bills that she has incurred. Medical costs of
Lyme disease are estimated at $1.3 billion per year. When accounting
for indirect medical costs, including the loss of work, the annual cost
balloons to $75 billion per year.
A correct and early diagnosis can reduce costs, as well as improve
the prognosis, but we have a long way to go. When HIV became a public
health crisis, fortunately, a gold standard for identification and
treatment was developed within 10 years. Lyme disease, by contrast, was
identified more than 40 years ago; yet there still is no gold standard
treatment, and existing prevention, education, and diagnostic efforts
have proven to be inadequate.
The TICK Act would apply a three-pronged approach to addressing Lyme
and other tick and vector-borne diseases. First, it would establish an
office of oversight and coordination of vector-borne diseases at the
Department of Health and Human Services. This office would develop a
national strategy to prevent and treat Lyme and other tick-borne
diseases. It would expand research and improve testing, treatment
affordability, and public awareness. The office would also coordinate
with key Federal agencies, including the CDC, the Department of
Defense, USDA, and EPA to protect Americans from these diseases.
Second, our bill would reauthorize the Regional Centers for
Excellence in Vector-Borne Disease, which Congress established in 2017
in response to the Zika outbreak. Since then, tick-borne diseases have
accounted for three out of four vector-borne diseases in our country,
and these centers have been effective in leading the scientific
response. The Collins-Smith bill would reauthorize these centers for
another 5 years at $10 million per year.
Finally, our bill would establish CDC grants, which would be awarded
to State health departments to improve data collection and analysis,
support early detection and diagnosis, improve treatment and heighten
public awareness. The TICK Act takes a comprehensive approach to
address tick-borne diseases.
Mr. President, I ask unanimous consent to have printed in the Record
at the conclusion of my remarks letters of support signed by more than
2 dozen organizations supporting our bill, including the Midcoast Lyme
Disease and Support Education organization, the LivLyme Foundation, the
Northeast Regional Center for Excellence in Vector-Borne Diseases, the
National Association of County and City Health Officials, and the
Entomological Society of America.
I urge all of our colleagues to support this important legislation.
There being no objection, the material was ordered to be printed in
the Record, as follows:
May 22, 2019.
Re: Stakeholder Support for Bill on Vector-Borne Disease
Management.
Hon. Susan Collins,
Dirksen Senate Office Building,
Washington, DC.
Dear Senator Collins: On behalf of the Vector-Borne Disease
Network and allied organizations, we the undersigned write to
articulate our support for the objectives of ``Ticks:
Identify, Control, and Knockout Act'' or the ``TICK Act,''
which aims to combat the escalating burden of VBD. The
Vector-Borne Disease Network is a new stakeholder group of
non-profit organizations led by the Entomological Society of
America (ESA) that aims to reduce human and animal suffering
caused by arthropod disease vectors.
Illnesses such as Lyme disease, Zika virus, Malaria, and
West Nile virus are transmitted by vector organisms,
primarily blood-feeding insects or arthropods. Vectors ingest
disease-causing germs when biting an infected human or animal
and later inject them into a new host during a subsequent
bite.
Between 2004 and 2016, reported human disease cases in the
U.S. resulting from bites from arthropods--primarily ticks
and mosquitoes--tripled, according to the U.S. Centers for
Disease Control and Prevention (CDC). Meanwhile, nine new
germs spread by ticks and mosquitoes were discovered or
introduced in that same timeframe. Disease vectors also pose
significant threats to both livestock and companion animals.
The underlying causes for these trends are varying and
complex, and so are the potential solutions.
Due to all the challenges mentioned above, and the growing
threat to American health and security posed by vector-borne
disease (VBD), the Vector-Borne Disease Network is pleased to
see new legislation that aims to establish an Office of
Oversight and Coordination for VBD within the Department of
Health and Human Services to promote interagency
coordination; develop and maintain a national plan for
responding to VBD; reauthorize the CDC Regional Centers of
Excellence in VBD for five years; and authorize a cooperative
agreement through CDC to support state health department
efforts to improve management, surveillance, diagnosis, and
education.
On behalf of this coalition of stakeholders invested in the
mission to reduce the public-health and economic risks posed
by ticks and mosquitoes, we thank you for your commitment to
this critical issue.
Sincerely,
Anastasia Mosquito Control District of St. Johns County
(FL); Associated Executives of Mosquito Control Work in New
Jersey; Drexel University, College of Medicine; Entomological
Society of America; Colorado Tick-Borne Disease Awareness
Association; College of Agricultural and Life Sciences,
University of Wisconsin-Madison; Hudson Valley Lyme Disease
Association; Lyme Association of Greater Kansas City, Inc.;
Midwest Center of Excellence for Vector Borne Disease;
National Association of Vector-Borne Disease Control
Officials; New Jersey Mosquito Control Association; North
Fork Deer Management Alliance;
[[Page S3112]]
Northeast Regional Center for Excellence in Vector Borne
Diseases; Pacific Southwest Center of Excellence in Vector-
Borne Diseases; School of Veterinary Medicine at UW-Madison;
Southeastern Regional Center of Excellence in Vector Borne
Diseases; University of Miami Miller School of Medicine;
University of Rhode Island Center for Vector-Borne Disease;
University of Rhode Island TickEncounter Resource Center; US
Biologic; Western Gulf Center of Excellence for Vector-borne
Disease.
____
Letter of Support for the TICK Act--May 21, 2019
Please pass along my sincere gratitude to Senator Collins
for taking on this fight on our behalf. This has been a 10-
year crusade for me with the first 5 years fighting for my
life and the latter, fighting on behalf of others.
Bit by a tick in Oct 2009 while outside doing fall clean up
with my husband, I was misdiagnosed for the next 2.5 years by
23 doctors and specialist from panic attacks to chronic
fatigue to fibromyalgia. When a scan revealed lesions on my
brain appeared and my neurological symptoms intensified, I
was tested and diagnosed with MS. When my symptoms became
even more severe and I was not responding to treatment, I was
reevaluated and my diagnosis changed to Parkinson's. When I
began to have trouble swallowing and using my arms and legs
was a daily challenged, my medical providers wanted me tested
for ALS. I knew that was a death sentence for me and it was
at this point I knew that I needed to fight. This was when I
spoke out for the first time and advocated for myself.
Thanks to my sister in law who kept pressing me to be
checked for Lyme disease, even though I had 4 negative tests,
I demanded to see a provider who knew about Lyme. My primary
refused to give me a referral because that was not what they
thought I had. The intern gave me a scrap of paper with the
name of someone he knew saw Lyme patients and that doctor,
number 24, saved my life.
Shortly thereafter, with bloodwork and additional tests, I
was diagnosed with late stage neurological Lyme, Babesia,
Bartonella, Rocky Mountain Spotted Fever and Erlichiosis.
These medical providers who knew more about Lyme and tick-
borne disease not only saved my life but gave my life back to
me.
Today, I am in full remission going on 5 years.
In April of 2014, I co-founded and became President of
Midcoast Lyme Disease Support & Education (MLDSE), a
charitable nonprofit 501c3 organization that travels
statewide, hosting year-round free educational and prevention
talks and event. We advocate for changes at state and federal
levels and provide support to those in Maine afflicted by
tick-borne disease by connecting them to medical providers
and financial assistance programs. We are the Maine partner
of the national Lyme Disease Association, members of Maine's
CDC Vector-borne Work Group and active in Maine's Lyme
legislation. In 2018, I wore a federal hat as the co-chair to
the HHS Tick-borne Disease Working Group's Access to Care
Services and Patient Support subcommittee. I honored to have
been selected for that role as it defines who I am these
days, sitting in the trenches alongside patients and their
families and connecting them with whatever services they need
as they journey back towards health and wellness. I am not a
victim but a survivor and one who advocates for those who
cannot advocate for themselves.
This is a fulltime job for and one that I do on a voluntary
basis without pay.
Sen Collins, your support is so greatly needed as funding
is crucial to our work here on the ground as well as on the
hill. You see, when people are personally touched by
something, they fight and they fight hard to make changes. We
will not stop fighting until the status quo changes. Until
the new science is embraced and patients are treated with
fairness and equality, irregardless of the disease that they
may have. We will fight to protect the doctors who put their
careers on the line each and every day to save their
patients.
When a cancer doctor thinks outside the box and heals their
patient, they are deemed a hero. When a Lyme provider does
it, they are brought up under medical scrutiny and
disciplined beyond belief.
The governing body that exists and controls all things to
do with disease (IDSA) wrote in their guidelines a foot note
that reads as follows:
These guidelines were developed and issued on behalf of the
Infectious Diseases Society of America.
It is important to realize that guidelines cannot always
account for individual variation among patients. They are not
intended to supplant physician judgment with respect to
particular patients or special clinical situations. The
Infectious Diseases Society of America considers adherence to
these guidelines to be voluntary, with the ultimate
determination regarding their application to be made by the
physician in the light of each patient's individual
circumstances.
In 2013, ILADS introduced another set of diagnostic and
treatment options and after passing a rigorous qualifying
process, it was introduced into the National Guidelines
Clearinghouse but ignored by IDSA and dismissed by mainstream
medicine.
In 2015 advocates, patients and medical providers were
forced to pushed through a bill of protection [Maine Public
law LD422] to protect those knowledgeable about tick-borne
disease who choose to do just that--focus on the individual
circumstances of each patient and treat accordingly
Sen Collins, Lyme and tick-borne disease is not a cookie
cutter disease and a cookie cutter approach has failed time
and time again. With your bill, a strong push and more
funding will help with provider and patient education and
access to better diagnostic and treatment services.
Thank You so much,
Paula Jackson Jones, President and Co-Founder, Midcoast
Lyme Disease Support & Education, Co-Chair of Access to Care
Services and Patient Support, subcommittee of the HHS Federal
Tick-borne Disease Working, Group; Maine partner of the
National Lyme Disease Association; Member of Maine CDC
Vector-Borne Workgroup; Active in Maine's Lyme Legislation
movement.
Ms. SMITH. Mr. President, I thank Senator Collins for her leadership
on this issue. I am very happy to have a chance to work with her on
this.
Today, my colleague Senator Collins and I are introducing a bill to
help fight Lyme disease, so we are introducing this bill today here in
the Senate as many Minnesotans and Mainers get ready to head out to our
beautiful national parks, lakes, and coastline to go fishing, hiking,
and all of the things that we love, love, love to do.
In Minnesota, we have more than 10,000 lakes and a lot of space for
outdoor activities, and we also have a growing tick population due to
warmer summer months. With so many lakes and our excitement to get
outside after a long winter, Minnesotans have become more at risk of
contracting Lyme disease and other vector-borne illness.
A vector-borne illness means an illness that is carried by an insect,
like ticks. Unfortunately, the number of Lyme disease cases in
Minnesota is on the rise. Over the past 10 years, the number of
reported cases has increased by nearly a third.
Our bill, the TICK Act, aims to reduce the number of cases by
establishing an interagency office of oversight and coordination to
target, prevent, and treat Lyme disease and other vector-borne
illnesses. In our legislation, we made sure to enable collaboration
between universities and public health agencies, and it is important we
train and equip our public health first responders in how best to
prevent and treat vector-borne illnesses.
The TICK Act is supported by a coalition of researchers, as Senator
Collins just said, also frontline medical professionals and government
officials from across the country, so I urge my colleagues to listen to
the professionals on the ground fighting vector-borne diseases and
quickly take up and pass this bill.
May is Lyme disease awareness month. We must be aware of and prepare
for future vector-borne disease outbreaks, and this bill will be an
important first step.
So I want to thank Senator Collins, my colleague on the HELP
Committee, for her leadership on this important issue. I am glad we are
able to work together on this bill.
______
Link To Congressional Record
https://www.congress.gov/congressional-record/2019/05/23/senate-section/article/S3109-1
It appears Senator Lamar Alexandar from Tennessee was the one who switched the bills. Who was behind that sneaky move, I do not know- yet.
November 5, 2019
Reported by Mr. Alexander, with an amendment
Here is Senator Alexander's contact information.
https://www.alexander.senate.gov/public/index.cfm/officelocations
To see who donates to Senator Lamar Alexander click on the link below.
You won't be too surprized to see where most of his money comes from.
https://www.opensecrets.org/members-of-congress/summary?cid=N00009888&cycle=2020&type=C
Some of the ones who will benefit from this change are researchers who have not helped us in the past, and now who have no incentive to help us in the future. They are from the CDC's five Centers of Excellence listed below.
They have not shared the funding with the researchers who have our best interests at heart (the truth) and who have a proven record of reporting the facts. This is more money down the drain- MILLIONS of dollars. It's a shame!
The Northeast Regional COEexternal icon at Cornell University- Notice Yale University and the NY Department of Health are part of this center.
The Pacific Southwest COEexternal icon at the University of California, Davis and Riverside- Notice the government agencies are running the center along with no one else who has helped us in the past.
The Southeastern Regional COEexternal icon at the University of Florida- Notice you can search for the word "Lyme" in the search bar and get almost nothing.
The Western Gulf COEexternal icon at the University of Texas Medical Branch in Galveston- Notice there are nine different health departments involved.
The Midwest COEexternal icon at the University of Wisconsin, Madison- Notice they refer you to the CDC to get more information.
Link To CDC's Centers of Excellence Information
https://www.cdc.gov/ncezid/dvbd/about/prepare-nation/coe.html
Last Updated- December 2019
Lucy Barnes
scc