[Congressional Record Volume 165, Number 87 (Thursday, May 23, 2019)]
[Senate]
[Pages S3111-S3112]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      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.
                                 ______