[Senate Hearing 116-543]
[From the U.S. Government Publishing Office]


                                                      S. Hrg. 116-543

                             THE TICK ACT:
                        AN URGENT PUBLIC HEALTH
                    RESPONSE TO TICK-BORNE DISEASES

=======================================================================

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                     ONE HUNDRED SIXTEENTH CONGRESS


                             FIRST SESSION

                               __________

                              ORONO, MAINE

                               __________

                           SEPTEMBER 5, 2019

                               __________

                           Serial No. 116-11

         Printed for the use of the Special Committee on Aging
         
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]         


        Available via the World Wide Web: http://www.govinfo.gov
        
                               __________

                    U.S. GOVERNMENT PUBLISHING OFFICE                    
47-293 PDF                 WASHINGTON : 2022                     
          
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                       SPECIAL COMMITTEE ON AGING

                   SUSAN M. COLLINS, Maine, Chairman

TIM SCOTT, South Carolina            ROBERT P. CASEY, JR., Pennsylvania
RICHARD BURR, North Carolina         KIRSTEN E. GILLIBRAND, New York
MARTHA McSALLY, Arizona              RICHARD BLUMENTHAL, Connecticut
MARCO RUBIO, Florida                 ELIZABETH WARREN, Massachusetts
JOSH HAWLEY, Missouri                DOUG JONES, Alabama
MIKE BRAUN, Indiana                  KYRSTEN SINEMA, Arizona
RICK SCOTT, Florida                  JACKY ROSEN, Nevada
                              ----------                              
            Sarah Khasawinah, Majority Acting Staff Director
                 Kathryn Mevis, Minority Staff Director
                         
                         
                         C  O  N  T  E  N  T  S

                              ----------                              

                                                                   Page

Opening Statement of Senator Susan M. Collins, Chairman..........     1

                           PANEL OF WITNESSES

Lyle Petersen, M.D., MPH, Director, Division of Vector-Borne 
  Diseases, National Center for Emerging and Zoonotic Infectious 
  Diseases, Centers for Disease Control and Prevention, Fort 
  Collins, Colorado..............................................     4
James Dill, Ph.D., Pest Management Specialist and Diagnostic and 
  Research Lab Coordinator, University of Maine Cooperative 
  Extension, Orono, Maine........................................     5
Sean McCloy, M.D., MPH, MA, Medical Director, Integrative Health 
  Center of Maine, Cumberland Foreside, Maine....................     7
Paula Jackson Jones, President and Co-Founder, Midcoast Lyme 
  Disease Support and Education, Nobleboro, Maine................     9
Christopher Philbrook, Individual Affected by Lyme Disease, 
  Cumberland, Maine..............................................    11

                                APPENDIX
                      Prepared Witness Statements

Lyle Petersen, M.D., MPH, Director, Division of Vector-Borne 
  Diseases, National Center for Emerging and Zoonotic Infectious 
  Diseases, Centers for Disease Control and Prevention, Fort 
  Collins, Colorado..............................................    27
James Dill, Ph.D., Pest Management Specialist and Diagnostic and 
  Research Lab Coordinator, University of Maine Cooperative 
  Extension, Orono, Maine........................................    34
Sean McCloy, M.D., MPH, MA, Medical Director, Integrative Health 
  Center of Maine, Cumberland Foreside, Maine....................    36
Paula Jackson Jones, President and Co-Founder, Midcoast Lyme 
  Disease Support and Education, Nobleboro, Maine................    38
Christopher Philbrook, Individual Affected by Lyme Disease, 
  Cumberland, Maine..............................................    41

                       Statements for the Record

Holly Noonan, Testimony..........................................    45
Dr. Kristen Honey, Testimony.....................................    47
Joel Beaule, Testimony...........................................    52
Michaela Cisowski, Testimony.....................................    53
Maine Medical Center Research Institute Letter...................    56
Paula Doucette, Testimony........................................    58
Tracey Allen, Testimony..........................................    59

 
                             THE TICK ACT:
                        AN URGENT PUBLIC HEALTH
                    RESPONSE TO TICK-BORNE DISEASES

                              ----------                              


                      THURSDAY, SEPTEMBER 5, 2019

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 10:06 a.m., at 
the University of Maine Cooperative Extension Diagnostic and 
Research Laboratory, Orono, Maine, Hon. Susan M. Collins 
(Chairman of the Committee) presiding.
    Present: Senator Collins.

                 OPENING STATEMENT OF SENATOR 
                   SUSAN M. COLLINS, CHAIRMAN

    The Chairman. Good morning, everyone. This official hearing 
of the Senate Special Committee on Aging will come to order. 
First, let me welcome everyone who is here today.
    Lyme disease and other tick-borne diseases have soared in 
Maine and across the country during the past 15 years. Many of 
you here today have had firsthand experiences with the 
devastating consequences of tick-borne diseases. I would like 
to take just a moment to recognize Susie Whittington, whose 
mother, Lyn Snow, a well-known artist who captured Maine so 
beautifully, tragically died in 2013 from the deadliest tick-
borne disease known as ``Powassan.'' Thank you so much, Susie, 
for being here with us today.
    My thanks also to the University of Maine Cooperative 
Extension's Tick Lab for hosting this hearing. I just toured 
the lab, and I was so impressed with the extraordinary research 
and work that is going on here. I saw firsthand how its 
outstanding work is advancing our understanding of the diseases 
that ticks carry and how the employees of the lab are working 
every day to protect Mainers.
    They also do a host of other important work in this lab, 
and it was wonderful to learn more about it, so thank you, Jim 
Dill, for arranging for the tour and for all you did to welcome 
us.
    In Maine last year, there were approximately 1,400 new 
cases of Lyme disease, nearly double the number of cases as 
2010, as we can see from this chart. Listen to this fact: The 
incidence of Lyme disease in Maine is the highest in the 
country, at 107 cases per 100,000 Mainers, which is 10 times 
higher than the national average. I was talking with President 
Joan Ferrini-Mundy here today and talking about the work that 
the lab is doing and the university is doing and how incredibly 
important it is, and it includes this tick removal kit, which 
the lab will make available to anyone who wants one and which 
our wardens and other State employees who are working outside, 
like Inland Fisheries and Wildlife, can use.
    Other tick-borne diseases are also on the rise. For 
example, anaplasmosis, related to rickets, has increased by 
more than five-fold. While ticks do not discriminate and the 
diseases they carry affect Americans of all ages, tick-borne 
diseases disproportionately affect people over the age of 65, 
and that is why, as Chairman of the Aging Committee, I thought 
it would be appropriate for us to hold this hearing.
    From children to seniors, far too many Americans with Lyme 
disease experience a complex diagnostic odyssey that takes 
months or even years. One of my nieces, Catherine Collins, 
contracted Lyme disease and had a very difficult time getting 
an accurate diagnosis. She went on to get Lyme disease two 
additional times, but at least in those cases she knew what to 
look for. Regrettably, her story is not at all unusual, as we 
will learn from our witnesses.
    In addition to the physical and emotional toll that Lyme 
disease can impose, it is also expensive. 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 costs balloon to $75 billion per year.
    A correct and early diagnosis can reduce costs and improve 
the prognosis, but we have a long way to go. When HIV became a 
public health crisis, a gold standard for identification and 
treatment was developed within 10 years. Lyme disease was 
identified more than 40 years ago, yet there still is no gold 
standard for treatment. Existing prevention, education, and 
diagnostic efforts are helpful but remain fragmented. It is 
time for us to unite in the fight against ticks.
    Earlier this year, I introduced the bipartisan bill with 
Minnesota Senator Tina Smith and my Maine colleague, Senator 
Angus King. It is called ``The TICK Act.'' ``TICK'' in the name 
of our bill stands for ``Ticks: Identify, Control, and 
Knockout.'' Through a uniform and unified approach, this 
legislation would arm local communities and States with the 
resources they need for prevention, early detection, and 
treatment of tick-borne diseases.
    The TICK Act would apply a three-pronged approach to tackle 
Lyme and other tick-and vector-borne diseases. First, it would 
establish an office to develop a national strategy to prevent 
tick-borne diseases. Second, the bill would reauthorize the 
Centers for Disease Control Regional Centers of Excellence in 
Vector-Borne Diseases that have led the scientific response to 
fighting ticks. Finally, the bill would establish grants to 
support State health departments' efforts to improve data 
collection and analysis, early detection and diagnosis, 
treatment, and public awareness, and that indeed is one of the 
purposes of our hearing today, to increase public awareness.
    We are very fortunate to have with us a truly extraordinary 
group of witnesses, including national, State, and local 
experts. I also am very pleased that we have two individuals 
who are going to share with us their personal experiences with 
Lyme disease. These individuals will give us their insights on 
what it has been like to have Lyme disease and will share their 
journey and their advocacy efforts with us. They are Paula 
Jackson Jones and Christopher Philbrook, and I will introduce 
them in more detail in just one moment.
    We will now turn to our witnesses.
    First, I am pleased to welcome the Director of the Division 
on Vector-Borne Diseases at the Centers for Disease Control and 
Prevention, Dr. Lyle Petersen. A leading international 
authority on tick-borne diseases and on vector-borne diseases 
more generally, Dr. Petersen has worked through epidemics in 
the past from HIV to Zika. Today he is leading the fight 
against Lyme.
    Dr. Petersen, we are really delighted that you have 
traveled so far to be with us today, and I want to note his 
personal effort to rearrange his schedule because his daughter 
is getting married this weekend.
    He really has made an extraordinary effort to be with us.
    Next, we will hear from Dr. James Dill, who is also our 
gracious host here at the University of Maine Cooperative 
Extension Diagnostic and Research Lab. Dr. Dill serves as the 
lab coordinator as well as the pest management specialist. His 
leadership on tick-borne diseases is well known in Maine, both 
as a scientist and as a policymaker, since he serves in the 
State Senate.
    Next, we will hear from Dr. Sean McCloy, the medical 
director of the Integrative Health Center of Maine, in 
Cumberland Foreside. Dr. McCloy brings a background of public 
health and a wealth of knowledge in providing care to patients 
with tick-borne diseases.
    I am very pleased that Paula Jackson Jones, an 
extraordinary advocate who survived Lyme disease and founded a 
nonprofit organization, the Midcoast Lyme Disease Support and 
Education Association, and she will be testifying today. Her 
work has been recognized in Maine and nationally. The Union 
Fair recognized her organization with an award last month, and 
she has also been honored to be chosen as a Point of Light, a 
national recognition for her service for others. You may 
remember that that organization was first started by President 
George Bush.
    Finally, we will hear from a personal friend and former 
staffer of mine, Christopher Philbrook, who will share his 
personal struggle with Lyme disease. I have known Chris for 
years and how well I remember when he was working with me and 
trying to figure out this bizarre set of symptoms that he had. 
He will describe how this disease has affected his life, and I 
am very thankful for his willingness to be public with his 
story.
    I want to thank all of you for joining us today. We look 
forward to hearing your testimony, and Dr. Petersen, we will 
start with you.
    Before we do that, I want to run one brief advertisement 
here for the lab.
    I want you all to pick up the tick removal kit that you 
will find on your chair, and this will be very helpful to you 
if you find, after walking in the woods or gardening or 
hunting, this being outside, that you have picked up a tick, 
and it will tell you what to do, and the University of Maine 
does an extraordinary job in identifying ticks and also telling 
you whether or not they carry a pathogen.
    Dr. Petersen, thank you for being here. Please proceed.

        STATEMENT OF LYLE PETERSEN, M.D., MPH, DIRECTOR,

       DIVISION OF VECTOR-BORNE DISEASES, NATIONAL CENTER

         FOR EMERGING AND ZOONOTIC INFECTIOUS DISEASES,

          CENTERS FOR DISEASE CONTROL AND PREVENTION,

                     FORT COLLINS, COLORADO

    Dr. Petersen. Good morning, Chairwoman Collins. I am Dr. 
Lyle Petersen, Director of CDC's Division of Vector-Borne 
Diseases. Thank you for the opportunity to testify before you 
today on our efforts to protect the U.S. from the growing 
threat of vector-borne diseases, and tick-borne diseases in 
particular. We appreciate your continued commitment and support 
in this area. I lead our agency's efforts to research, prevent, 
and control viruses and bacteria spread by mosquito, tick, and 
flea vectors. These vectors transmit over 100 pathogens known 
to infect people, including West Nile, Zika, Lyme disease, and 
plague.
    We recently examined trends in vector-borne diseases and 
found that the reported cases in the U.S. tripled from 2004 to 
2016. During this same period, tick-borne disease cases more 
than doubled, and the U.S. experienced several mosquito-borne 
outbreaks, including Zika. In 2017, reported cases again 
increased for all nationally notifiable tick-borne diseases.
    We are particularly concerned about vector-borne diseases 
in Maine. Reported cases continue to rise steadily over time, 
with more than 98 percent of them being tick-borne. On a 
population basis, as Senator Collins noted, Maine had the 
highest incidence of Lyme disease in the Nation, with more than 
1,800 cases of Lyme disease reported in just 1 year. Maine also 
had the second highest incidence of anaplasmosis, second only 
to Vermont. These statistics are of great concern to us, and we 
are working closely with the Maine CDC and academic 
institutions to address this growing threat.
    Why are we seeing more diseases than ever before? There are 
at least three major factors at play.
    First, we know more about vector-borne disease pathogens 
than ever before. In the last 13 years, 9 new vector-borne 
pathogens were identified in the U.S., including Zika and seven 
new tick-borne pathogens.
    Second, travel and trade are moving more pathogens and 
vectors around the world. Zika virus was an example of the 
impact that travel can have on the spread of disease. The U.S. 
had more than 5,000 reported cases in 2016 of which most were 
in travelers returning from infected areas.
    Third, existing vectors continue to expand across the U.S. 
For example, the ticks that spread Lyme disease and other tick-
borne diseases are now found in 1,500 U.S. counties covering 43 
States. This marks a 45-percent increase in the number of 
counties that have recorded these ticks since 1998.
    We now have another tick that could pose a threat to the 
public's health. The Asian longhorned tick was first discovered 
in New Jersey in 2017 and has now been identified in 11 
additional States. This tick causes massive infestations and 
transmits several vector-borne diseases throughout the world. 
To date, this tick has not been found in Maine; however, models 
suggest that Maine has a suitable habitat for this tick. State 
tick surveillance activities, funded by CDC, should allow for 
early detection if this tick arrives in the State.
    What are we doing to address all of these threats? We know 
that vector-borne disease can be devastating to families in 
Maine and across the Nation. CDC is committed to addressing 
Lyme and other tick-borne diseases. We are improving 
diagnostics so that doctors can best support patient outcomes. 
We disseminate the best scientific information to health care 
professionals and the public and work with State and local 
partners to ensure that Lyme disease prevention and information 
are readily accessible.
    We are grateful to Congress for their support in the years 
following Zika, which has enabled us to increase support for 
vector-borne disease prevention and control across 64 U.S. 
jurisdictions while providing enhanced support to nine States 
and one U.S. city at high risk for disease.
    We know that there are still unmet needs. For example, many 
State health departments in the Northeastern U.S. like the 
Maine CDC have expressed concerns that they are hard-pressed to 
address both Lyme disease and anaplasmosis, especially because 
the incidence of anaplasmosis has more than doubled in the last 
4 years.
    CDC is committed to reversing the upward trends in vector-
borne disease. However, it is clear that this will not be easy. 
There are no proven community prevention methods for the most 
common tick-borne diseases as well as many mosquito-borne 
diseases. Although we can control certain mosquito-borne 
diseases, current national, State, and local capacity is 
limited. Finally, there are no human vaccines for any vector-
borne diseases found in the U.S.
    We are committed to making strategic investments in 
promising new prevention strategies, including informing and 
supporting vaccine development and implementation, as vaccines 
become available.
    Thank you again for the opportunity to appear before you 
today and for your support of our fight to protect the U.S. and 
its territories from the growing threat of vector-borne 
diseases. I am happy to answer any questions that you may have.
    The Chairman. Thank you, Dr. Petersen.
    Dr. Dill.

              STATEMENT OF JAMES DILL, Ph.D., PEST

           MANAGEMENT SPECIALIST, AND DIAGNOSTIC AND

         RESEARCH LAB COORDINATOR, UNIVERSITY OF MAINE

              COOPERATIVE EXTENSION, ORONO, MAINE

    Dr. Dill. Well, good morning, everyone, and welcome to the 
University of Maine, and thank you especially to Senator 
Collins for the opportunity to speak before the Special
    Committee on Aging in regard to the increasing challenges 
associated with combating tick-borne disease here in Maine. As 
the pest management specialist for University of Maine 
Cooperative Extension and a State Senator in the Maine 
Legislature, I have had the unique opportunity to experience 
these challenges from both the political and scientific 
perspectives, but today I will speak from my university 
perspective.
    Tick populations have undergone extensive range expansion 
over the past 50 years, particularly here in the Northeast. 
Multiple factors, including reforestation, changes in climate, 
and increased abundance of wildlife hosts such as rodents and 
white-tailed deer, have contributed to this surge. Maine is a 
heavily forested State with a largely rural population that 
spans four degrees of latitude and maintains a robust wildlife 
population. As such, we have witnessed a dramatic increase in 
the number of ticks, their geographic distribution, and the 
subsequent incidence of tick-borne disease.
    This increase in tick-borne diseases has rapidly become a 
significant public health issue in Maine and throughout much of 
the United States. The incidence and distribution of these 
pathogens continues to increase, often resulting in severe 
health issues for those affected.
    In addition to the public health threats associated with 
tick-borne disease, societal and economic costs have also had 
economic impacts. Of the roughly 13 tick-borne diseases 
identified in the United States, 5 have been found in Maine, 
including Lyme disease, anaplasmosis, babesiosis, Borrelia 
miyamotoi disease, and Powassan encephalitis. The primary 
vector of these pathogens, the deer tick or black-legged tick, 
has greatly increased in both population size and geographic 
range within the State. Furthermore, Maine faces significant 
threats related to invasive tick species including the lone 
star tick and, as just mentioned, the Asian longhorned tick, 
both of which can have serious impacts on the health of humans, 
wildlife, and domestic animals.
    Combating these threats is an immense challenge that relies 
heavily on an integrated approach that includes investment in 
new medical treatments, diagnostics, and vaccines, as well as 
research into monitoring tick populations, reducing tick and 
host habitat, managing ticks and their wildlife hosts, and 
widespread educational outreach.
    Maine has been fortunate to have a relatively long history 
of research and outreach on tick-related issues thanks to a 
collaborative network of private and public institutions. The 
Maine Medical Center Research Institute has been conducting 
research on ticks and vector-borne disease since the late 
1980's and has emerged as a leader in the field. Maine CDC has 
taken a proactive role, combining epidemiology with widespread 
public outreach efforts to help minimize the spread of tick-
borne diseases. Many States have stopped counting cases of Lyme 
disease due to the high burden placed on State health 
departments and have begun instead estimating their cases. 
These estimates can vary in their accuracy, thus affecting the 
regional and national rates of disease. Maine CDC is still 
counting individual cases, but as the burden continues to 
increase and funding remains limited, a transition to an 
estimation system also might be likely.
    At the University of Maine, significant research is 
underway both in the School of Biology and Cooperative 
Extension. A primary goal of UMaine Extension is to explore 
ways to minimize the occurrence and spread of ticks and tick-
borne disease in Maine. Understanding the shifts in tick 
population size and geographic range is critical in evaluating 
risk and targeting management strategies. UMaine Extension 
currently monitors tick populations through a public tick 
identification program and tick-borne disease screening 
program. Through these programs, Maine residents can send tick 
samples to the lab for identification and to test whether the 
ticks are carrying the pathogens that cause Lyme disease, 
anaplasmosis, and babesiosis. Additional pathogens are 
scheduled to be added to the testing program in 2020. A small-
scale active surveillance program is also ongoing, in which 
ticks are actively monitored through field survey methods. 
Additional active monitoring of small mammal hosts is also 
ongoing. The information generated from these programs will 
allow us to track the distribution of ticks and tick-borne 
disease in Maine and to identify priority areas for targeting 
prevention and management strategies.
    The University of Maine School of Biology and Ecology is 
currently investigating multiple avenues related to the ecology 
of tick-borne disease, including the environmental conditions 
that enhance disease transmission, the impacts of climate 
change and human land-use patterns on ticks, as well as the 
risks related to tick-borne disease in Acadia National Park and 
its potential effects on the tourism industry.
    The public demands and political will to fight Lyme disease 
and other tick-borne diseases are strong in Maine; however, as 
with many rural States, the funding to wage such a battle is 
limited. Nonetheless, the people of Maine prioritized this 
battle in 2014 when voters approved a bond referendum to create 
the new University of Maine Cooperative Extension Diagnostic 
and Research Laboratory.
    Following several years of intense planning and 
construction, the new lab opened in June 2018. This high-
containment facility brings together research on animals, 
plants, and arthropods within one biosecure setting and has 
greatly enhanced the university's diagnostic capabilities. The 
construction of this facility has also broadened the 
university's collaborative efforts, facilitating collaborations 
between UMaine, Maine CDC, and the Maine Medical Center.
    Through the work being done at UMaine Extension, the 
University of Maine School of Biology and Ecology, Maine 
Medical Center, and the Maine CDC, the State has a solid 
infrastructure in which to tackle the issues surrounding tick-
borne disease. Historically, however, funding for tick-related 
research and particularly outreach and education has been a 
relatively low priority. The TICK Act will inject a much-needed 
investment into research and education and allow us to leverage 
existing infrastructure to fund novel approaches to monitoring 
and managing ticks and tick-borne disease.
    Thank you again, Senator Collins, for the opportunity to 
speak today, and I welcome any questions.
    The Chairman. Thank you very much.
    Dr. McCloy.

            STATEMENT OF SEAN MCCLOY, M.D., MPH, MA,

          MEDICAL DIRECTOR, INTEGRATIVE HEALTH CENTER

              OF MAINE, CUMBERLAND FORESIDE, MAINE

    Dr. McCloy. Thank you, Senator Collins, as well as to the 
esteemed members of this panel, and especially to Paula Jackson 
Jones for setting the temperature controls and getting us all 
ready for winter.
    I am honored to speak about my experiences and my 
frustrations as a physician treating patients with tick-borne 
disease. No other illness has been as intellectually 
challenging to properly diagnosis and manage as Lyme. The more 
I learn about this disease, the more questions I have, and the 
more I realize we have just scratched the surface of how 
complex the answers are. Hopefully your work on the TICK Act 
will move the research forward and provide more hope and more 
help to Mainers and to the worldwide public health.
    As a young resident at Maine Medical Center, I felt I was 
well trained in the classic signs and symptoms of Lyme Disease. 
We were taught to look for the bull's-eye rash, the flu 
symptoms outside of flu season, the joint pain. Like my 
colleagues, I treated these acute cases with a short course of 
antibiotics. However, I began to see more and more patients who 
did not fit the typical scenario. They never remembered a tick 
bite; they never had a rash. Their blood testing was negative 
for tick-borne illness, but they grew sicker and sicker despite 
seeing multiple specialists. I had to become a detective doctor 
to figure out how to help these people. I needed new tools for 
my tool box.
    I began attending conferences run by the International Lyme 
and Associated Diseases Society, or ILADS, and learned that 
there was more to the story than the basic model I was taught 
in medical school. I learned that there were differing opinions 
and conflicting guidelines between the Infectious Diseases 
Society of America, or IDSA, and ILADS. In short, IDSA states 
that Lyme disease is easily diagnosed with standard two-step 
blood testing and easily treated with a short course of 
antibiotics. If patients' symptoms persist, it is because of 
the damage already done and not because of a lingering 
infection. ILADS' view is just the opposite: the standard 
testing may not be accurate because of how Lyme can fool the 
immune system, and a short course of antibiotics may not be 
enough to eradicate all organisms in a person's body. ILADS 
feels that chronically ill individuals need a more 
comprehensive and long-term therapeutic regimen to treat their 
real disease, and not just be dismissed as suffering from ``the 
aches and pains of daily living.''
    Here we had two groups of very smart doctors, both wanting 
to help their patients, at loggerheads over how to diagnose and 
treat Lyme disease. This conflict left me and my patients in 
the middle searching for solutions. Now, I have got a Master's 
in Public Health and a Master's in Medical Sciences, so I love 
research. I dove into the literature from the standpoint of an 
open-minded skeptic. I read both sets of guidelines. I read the 
peer-reviewed journal articles supporting both sets of 
guidelines. I looked into who the authors were and who was 
paying for their research. In the end, I tried both sets of 
guidelines on my real-life patients to observe which approach 
works best.
    I found there was room for both the IDSA and ILADS 
solutions depending on the situation. The IDSA approach works 
well for acute, classic Lyme disease. If a person has a strong, 
healthy, robust immune system at baseline, then the testing 
should begin to turn positive after 2 to 3 weeks of infection. 
Fortunately, this infection is usually very easy to treat with 
a short course of antibiotics if you catch it early.
    Unfortunately, if you do not catch it early, this smart 
little spirochete begins to go through its own life cycle. It 
changes its shape and hides from the immune system, causing 
inaccurate, false negative blood testing. It creates a physical 
barrier called a ``biofilm'' that protects it from 
antimicrobials and from your own white blood cells. We are 
discovering what are called ``persister cells'' that are 
resistant to antibiotic therapy. They can remain dormant in a 
human body for months or years before they wake up again.
    In the unfortunate individuals who become chronically ill, 
multiple systems are affected. There is a complex interplay of 
genetic factors, inflammation and immune dysregulation, 
hormonal imbalance, neuroendocrine disruption and 
neuroinflammation leading to cognitive deficits and 
psychological illness, gastrointestinal dysfunction causing 
nutritional insufficiencies, which create metabolic imbalance 
and poor mitochondrial function, leading to the chronic fatigue 
that many describe, so lots of big words there. As I learned, a 
few weeks of antibiotics are not enough to heal these complex 
cases.
    The ILADS approach works better for these types of 
patients. It is an individualized, head-to-toe, integrative 
method of figuring out what is broken, what are the root causes 
of the illness, and how to help that person heal from the 
inside out. It is certainly not a perfect approach. Sometimes 
it requires long-term antibiotics that have their own risk of 
side effects. It is complicated and it takes a lot of the 
practitioner's time to do the detective work. It also takes a 
lot of the patient's time and energy and health care dollars to 
walk that road to recovery. These people need a lot of support 
to get them through the bad days. Eventually, they celebrate 
more and more good days and move forward to remission.
    To summarize, I have learned that there is no perfect set 
of guidelines, no one-size-fits-all algorithm that works for 
every case in the real world. The testing is imperfect. The 
medications do not always work. Some people get better right 
away, and some people develop problems that linger for years. 
The classic presentation of Lyme disease that physicians learn 
about in medical textbooks does not always apply because the 
little bug forgot to read the textbook.
    We need more answers, Senator Collins. How can we prevent 
the illness in the first place? How can we improve the accuracy 
of the testing? How can we tell which treatments work best, and 
how do we know when to discontinue a regimen? Your excellent 
work with the TICK Act will hopefully help provide more answers 
to the doctors and patients out there dealing with tick-borne 
disease.
    Thank you very much and be well.
    The Chairman. Thank you very much, Doctor.
    Ms. Jackson Jones.

               STATEMENT OF PAULA JACKSON JONES,

            PRESIDENT AND CO-FOUNDER, MIDCOAST LYME

        DISEASE SUPPORT AND EDUCATION, NOBLEBORO, MAINE

    Ms. Jackson Jones. Chairman Collins, thank you for holding 
this hearing and for inviting me to testify today. My name is 
Paula Jackson Jones, and I am here to share with you my 
personal story and my life's work. 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.
    I was bitten by a tick in October 2009 while outside doing 
fall cleanup with my husband. At the end of the day, I 
discovered a tick embedded in my side. We removed it, flushed 
it, and did not gave it another thought, not even when I became 
symptomatic 10 days later. For the next 2 years, I was 
misdiagnosed by 23 doctors and specialists with everything from 
panic attacks to respiratory infections, chronic fatigue to 
fibromyalgia. When my neurological symptoms intensified, a scan 
revealed lesions on my brain, and I was diagnosed with MS. When 
my symptoms became even more severe and I was not responding to 
treatment, I was reevaluated, and my diagnosis was changed to 
Parkinson's. I was 36 years old.
    When I began to have trouble swallowing and the use of my 
arms and legs was a daily challenge, 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 and 
advocate for myself.
    Thanks to a family member who kept pressing me to be 
checked for Lyme disease, even though I had four negative 
tests, I demanded to see a provider who knew about Lyme. My 
primary doctor refused to give me a referral because that was 
not what they thought I had. However, the intern gave me a 
scrap of paper with the name of someone he knew who saw Lyme 
patients, and in April 2011, after clinical examination, 
additional blood work, and tests, I was officially diagnosed 
with late-stage neurological Lyme complicated by Babesia, 
Bartonella, Rocky Mountain spotted fever, and ehrlichiosis. I 
was CDC-positive for all these tick-borne diseases. That Maine 
doctor, the 24th medical provider that I met with, not only 
saved my life but gave my life back to me.
    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.
    My treatment was not conventional or mainstream, but it was 
effective. It was tailored to my infections and to how I was 
responding every step of the way. Thankfully, my medical 
provider had a vast amount of resources to turn to when 
treatment options failed, which they did, and I am so grateful 
for my health today.
    In April 2014, after going into remission, I wanted to make 
a difference by raising awareness about the risk of tick-borne 
disease, educating people on how to protect themselves, but 
more importantly, I wanted to make their search for resources 
easier, accessible, and affordable, and so I co-founded 
Midcoast Lyme Disease Support and Education to connect patients 
and their families with the services that they need to journey 
back toward health and wellness. We are a nonprofit 501(c)(3) 
organization that travels statewide, raising awareness, 
fostering education, advocating for change, and providing 
support to those in Maine afflicted by tick-borne disease by 
linking them with medical providers, educational programs, and 
financial assistance. We are also 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 
movement.
    In 2018, I served as the co-chair to the Federal Health and 
Human Services Tick-borne Disease Working Group's Access to 
Care Services and Patient Support Subcommittee. Our task was to 
identify gaps and barriers that patients faced in accessing 
proper diagnosis and treatment. That information went into a 
report and was presented to Congress. I was very honored to 
have been selected for that role.
    Tick-borne disease is not a cookie-cutter disease, which 
explains why the cookie-cutter approach has failed time and 
time again. Today each of us on this panel has highlighted the 
increasing incidence of tick-borne disease infections and even 
viruses which could cause serious illness and death. Excuse me. 
The actual numbers are likely much higher since experts agree 
that the public health burden of tick-borne disease is 
considerably underreported. That is why it is so imperative 
that we adopt an all-hands-on-deck public health approach. We 
need to build a robust understanding of pathogenesis, design 
improved diagnostics, and develop preventative and effective 
vaccines. We need to fix faulty tests and increase physician 
education. Enacting the TICK Act that Senator Collins 
introduced will provide a lifeline not only to patients but to 
medical providers. With funding available for research and 
education, we can get medical providers on the same page, not 
only with improved diagnostic tools but better, more effective 
treatment options for their patients. With the TICK Act, we can 
stem the growing threat of tick-borne disease.
    Thank you again for this opportunity, and I look forward to 
your questions.
    The Chairman. Thank you so much for your moving testimony 
and sharing your personal odyssey with us and all the good work 
you have done for others as well.
    Ms. Jackson Jones. Thank you.
    Mr. Philbrook.

         STATEMENT OF CHRISTOPHER PHILBROOK, INDIVIDUAL

          AFFECTED BY LYME DISEASE, CUMBERLAND, MAINE

    Mr. Philbrook. Thank you, Senator. It is a small thing, but 
I did not realize how important smiling was to my mental health 
until I could not do it anymore.
    On a Saturday afternoon in 2007, I took a trip to Hogback 
Mountain in Virginia. Shortly after that trip, I woke up 
incapacitated. I could barely move a muscle. I thought it might 
be the flu, so I stayed in bed and did not think much of it. I 
have always been healthy and quick to recover, so when my 
condition did not improve in a few days, I flew back to the 
great State of Maine to see my doctor.
    One problem with Lyme disease is that the symptoms mimic so 
many other things, as I would soon discover and as Paula just 
mentioned in her testimony.
    When I got home, my seventh cranial nerve, which runs down 
the left side of my face and you can still see, went into a 
State of trauma. In addition to flu-like symptoms, I now also 
had Bell's palsy. I also could not eat or sleep for days and 
was in a State of pain so debilitating that I went to the 
emergency room and received a CAT scan. The scan showed nothing 
abnormal, so the doctor suggested I see a neurologist.
    I also scheduled a dentist appointment to see if something 
was wrong with my teeth because they hurt badly. The dentist 
took one look at me and said, ``Bell's palsy can be the result 
of Lyme disease. Do you have a tick bite or a bull's-eye 
rash?''
    I did not. I mentioned this to my neurologist, and he 
tested me for Lyme. The test came back negative--a false 
negative, which is something Dr. McCloy just said in his 
testimony. Shortly after that, the right side of my face went 
into a State of paralysis. I now had Bell's palsy on both sides 
of my face, and my mouth was almost completely wired shut, so 
the neurologist recommended an MRI. The MRI showed what looked 
like a tumor either growing or blocking my cavernous sinus, 
which is a nerve that runs from the brain to the face. We 
started talking about surgery and radiation. Now I am starting 
to worry.
    Next, the neurologist recommended a spinal tap. If you have 
never had a spinal tap, consider yourself very lucky. It is 
awful.
    When the neurologist also ordered a second MRI, this time 
injecting a blue dye into my body so the tumor would show up in 
greater detail, he also ordered a chest X-ray because I was 
having trouble breathing.
    The spinal tap showed Lyme in my spinal fluid, and the blue 
dye showed that the disease had attacked the nerves in my 
brain, causing extreme inflammation, but the good news? I did 
not have a tumor.
    I did, however, need a PICC line immediately installed. For 
4 weeks, the line delivered a strong dose of antibiotics from 
my bicep to my heart.
    I was working on Senator Collins' staff at the time. She 
watched my pain and suffering firsthand. I still have daily 
notes from her checking in on me. One said, ``You gave us quite 
a scare.''
    It was scary, and it remains scary today knowing that even 
in my back yard there are ticks. With its proposed public-
private partnerships, including pest control, the TICK Act aims 
to alleviate this threat--a prospect that would relieve a lot 
of anxiety for anybody who has gone through this.
    I was lucky my dentist spoke up, that I had a spinal tap--
not a normal Lyme testing protocol--and that my Lyme disease 
was treated quickly, within the first month and a half. I am 
happy to say that after my antibiotic treatment, I was cleared 
of the disease, although the residual effects remain--mainly 
sleep disturbances and facial paralysis, which you might not 
notice in the audience, but I am quite certain that the cameras 
will pick it up, because I have seen it.
    Others are not so lucky. When Lyme is not diagnosed 
quickly, co-infections can develop, and the disease can become 
much more difficult to treat. This happens far too often, which 
is why the TICK Act's directive for improved diagnostic testing 
is so important to me.
    For my ongoing symptoms, the most effective relief has come 
from food. After 8 years without improvement and having been 
told the only solution to improve my facial paralysis was 
plastic surgery, I started on a ketogenic diet and intermittent 
fasting--something author Tim Ferriss said was the only thing 
that knocked out his Lyme disease. Within 7 days, I felt 
movement in my face that I had not felt in years. Because 
ketosis--nutritional ketosis, which I was trying to achieve--is 
unrealistic for me to maintain over the long term, I have 
fallen back on Tom Brady's eating and training regimen, the 
TB12 method. I figure if it is good enough for him, it is 
definitely good enough for me.
    While this approach may not work for everyone, it did work 
for me. The problem is my story does not scale. I heard this 
approach by chance on a podcast. Conversely, the TICK Act would 
create a data base where the treatment approaches and outcomes 
could be shared immediately in the context where it matters 
most: in the doctor's office.
    Thank you, Senator Collins, for this opportunity and for 
your work on this public health threat. I hope the TICK Act, 
when enacted, gives people currently suffering with Lyme 
disease validation and hope that they can and will get better.
    Thank you.
    The Chairman. Thank you so much, Chris. I so remember when 
you got the results that suggested you had the tumor and how 
worried we were, and then when it turned out that it was not a 
tumor, we were still so worried because of the symptoms and 
pain you were experiencing, and I want to thank you for sharing 
your story with us today as well.
    Dr. Dill, I would like to start my questioning with you. 
You told us how UMaine Cooperative Extension accepts tick 
submissions to identify the different types of ticks and 
whether or not they are carrying a pathogen. Could you give us 
some idea, since April 1st when you first got the lab located 
here and up and running, and the end of July about how many 
ticks have you received from Mainers?
    Dr. Dill. In that short period of time, we received, as of 
yesterday, 1,837 ticks.
    The Chairman. So I think that is remarkable because a lot 
of people are unaware that you will do this service. In fact, I 
am a little worried that this hearing is going to overwhelm 
your resources, so that is further reason for me to get the 
TICK Act passed as soon as I can.
    Dr. Dill. Exactly.
    The Chairman. Of those ticks tested so far by the 
University of Maine, can you give us an idea of approximately 
what percentage of them carried some sort of disease and Lyme 
disease specifically?
    Dr. Dill. Of the ones tested, which was about 1,150 ticks 
that we have actually tested, 42.5 percent of them have carried 
some type of pathogen; 37 percent of them actually carried Lyme 
disease, and of course, that is statewide, and just to carry 
that further, anaplasmosis was 8 percent and babesiosis was 6 
percent.
    The Chairman. So that is a substantial number. Is the 
university trying to figure out the geographic distribution and 
whether there are hot spots in the State? You know, I remember 
when Lyme disease did not even exist in Maine, and then each 
year we have seen more and more cases, and also they seem to be 
expanding northward, but still there seems to be a difference 
in the geographic distribution.
    Dr. Dill. Definitely a difference in the geographic 
distribution. Especially as you go from south to north, it gets 
fewer and fewer. Coastal areas and southern Maine is really 
right now our hot spots, but what we are doing is with the 
surveillance that we are doing with the ticks being tested, we 
actually have some ongoing work, and we are working with Maine 
Medical Center, who is doing surveys also in, I think, all 16 
counties, and we are testing the ticks for them. So it is a 
great collaborative effort we have in the State of Maine. So we 
are looking at this type of thing as we move forward, trying to 
get some type of distribution.
    The Chairman. Thank you.
    Dr. Petersen, in 1947--and, no, I was not alive then.
    In 1947, we launched the National Malaria Eradication 
Project, and this Federal program, with State and local 
participation, succeeded in eradicating malaria from the United 
States in a very short period of time. I think it was by 1951, 
and the antimalarial campaign involved large-scale public 
health initiatives.
    Our approach to tick disease, tick-borne diseases and Lyme 
disease, is very fragmented today, and it really relies on the 
individual, people like Paula and like Chris, with their 
physicians, to try to figure out what in the world is going on. 
So with the TICK Act's national strategy, we are seeking to 
ultimately halt the progression of Lyme disease. That is an 
ambitious goal.
    Since you have so much experience with other epidemics and 
at the CDC, could you explain to us the difference that a 
larger-scale public health approach at the Federal, State, and 
local levels could--what promise that holds for Lyme disease 
control and prevention?
    Dr. Petersen. Thank you for the question. I think one thing 
that is very important to know is if we do not do anything 
large, like on the scale of what you were talking about with 
malaria, this is just going to continue to get worse and worse, 
and so there is really an urgent need to try and figure out how 
to better control these tick-borne diseases in particular.
    One of the advantages that they had with malaria was that 
there was DDT and other things that we may not want to use 
right now that could effectively control the mosquito vectors. 
Unfortunately, for Lyme disease and other tick-borne diseases, 
we do not have really good strategies, like a real unified 
strategy that will work to control these ticks.
    We really need to find better ways of controlling ticks, 
and in the meantime, we need to better do better surveillance 
for the ticks to see where they are, as Dr. Dill has mentioned, 
as well as trying to figure out how to better diagnose 
patients, as several of the panel members have mentioned, so 
there is no simple, easy answer, but it is going to take a 
concerted effort of State, local, Federal, private institutions 
all working together to try and find solutions for this growing 
problem.
    The Chairman. I was struck in your testimony when you 
pointed out that there is no vaccine that is available for Lyme 
disease, and I was thinking about that because my husband and I 
got a dog a year and a half ago, and we had her vaccinated for 
Lyme disease. So I know this is not exactly under CDC's 
purview, but I am sure you are a partner with the NIH and 
others, but what are the barriers to developing a vaccine? And 
is that an approach that we should be pursuing?
    Dr. Petersen. Yes, so we are very in favor of someone 
producing a very safe and effective vaccine for Lyme disease. I 
think ultimately this is going to be one of the key answers in 
trying to control Lyme disease. The key is it has got to be 
safe and it has got to be effective, and there is just a much 
higher bar for proving safety and efficacy in humans than there 
are, let us say, for your dog, with obvious reason, and so 
there is a company called ``Valneva'' that is in Stage II 
clinical trials with a Lyme disease vaccine both in the U.S. 
and in Europe, but it is still going to take several years to 
be able to bring this vaccine to market.
    The other thing to keep in mind is a vaccine is not the 
magic bullet for this. Certainly, if a safe and effective 
vaccine for Lyme disease is produced, that is great. We have 
got a huge increase in Lyme disease, but we have to remember 
that the same tick that spread Lyme disease spreads a lot of 
other diseases, like anaplasmosis, Powassan, and so it is going 
to take both an effort of vaccine development as well as better 
ways of controlling ticks to ultimately find the right 
solutions for this.
    The Chairman. I am encouraged to know that there are some 
Stage II clinical trials going on. That is encouraging.
    Ms. Jackson Jones, treatment for Lyme disease can be very 
expensive, and you talked about--I think you said that you went 
to more than 20 doctors to try to get an accurate diagnosis. We 
have heard from Chris about his odyssey and having MRIs and CAT 
scans and even a spinal tap and going to his dentist, who, 
fortunately, made the link. So talk to me about how expensive 
it can be to get an accurate diagnosis and treatment.
    Ms. Jackson Jones. Well, my personal journey, we are in the 
neighborhood of $250,000, and I stopped counting when I went 
into remission. There are still support measures and support 
finances that you go through. There is damage control. You 
know, my pancreas, my liver, my kidneys were collateral damage 
in the treatment journey, both from misdiagnosis, you know, all 
the different antibiotics that I took before finally getting 
the proper diagnosis. So I could almost double that number 
easily, because I am still taking support measures today to 
support my adrenals because I am very active, so just to keep 
me healthy, but also to piggyback off what Chris said, you 
know, diet plays a huge part in it, and we all know if you eat 
healthy, it is not cheap either, so, you know, just trying to 
stay healthy, stay with a healthy diet, exercise, reduce the 
stress, there are costs associated with all of that, and it is 
not something that is affordable by everybody.
    The Chairman. That is an extraordinary burden on top of the 
disease.
    Dr. McCloy, you talked about the disagreements among 
medical professionals on what should be done, and we also have 
an issue where the testing produces a lot of false negatives 
because it takes a while, I assume, for the antibodies to show 
up, and there is this two-stage blood test. So not to 
personalize this, but when I had a tick recently, my doctor did 
not do the test thing. She immediately gave me two doses of 
doxycycline.
    Wouldn't it make more sense to start treating even if you 
have not gotten the test results back yet to prevent long-term 
damage or to stop the disease in its tracks?
    Dr. McCloy. That is my own personal approach in my practice 
as well, but not all physicians would agree with that. I have 
been surprised at the sort of war going on out there in the 
medical world, in the medical community, and personal attacks 
between physicians over this whole Lyme disease question. So I 
think every physician has differing opinions and a different 
scale of training and education around what they are doing in 
their own practices, and the guidelines really do vary on what 
to do with that kind of circumstance. If you have got a person 
with a tick bite, do you treat them right away? Do you wait 
until the results come back? Do you wait until symptoms 
develop? If it is a pediatric patient, what do you do with a 
very small child?
    We have to remember the antibiotics themselves have a lot 
of side effects and potential damage, too, so it is always a 
risk/benefit discussion with each individual patient.
    For me, because I have seen the damage done to chronically 
ill individuals, I am a little more aggressive in my own 
strategy, so I definitely would treat early and have the tick 
sent off for testing and even begin treatment while the tick 
itself is waiting to come back.
    The Chairman. Dr. Petersen, are there efforts underway to 
try to improve the testing process so that you get quicker 
results or there are not so many false negatives?
    Dr. Petersen. Absolutely, and I think with the treatment, I 
think as the Nation's prevention agency, we would say the best 
treatment for all these diseases is to prevent them in the 
first place. However, you know, you have had our other 
panelists as well as people in the audience that have made it 
quite clear that the burden of the disease is quite high, and I 
think the first step in treatment is to do the proper diagnosis 
and get better diagnostic tests, and these are sorely needed, 
as was mentioned by several of the other panel members, and so 
we are engaged in a number of efforts to try and improve 
diagnosis. It is a huge effort on our part. We are working with 
other Federal agencies such as the NIH, private companies, and 
academic institutions to try and better improve the diagnosis, 
not only for Lyme disease but all of the vector-borne diseases.
    The Chairman. Thank you.
    Mr. Philbrook--I know you like me to call you ``Mr. 
Philbrook.'' You know, one of the aspects of your terrible 
journey with this disease that so impressed me is you just kept 
trying to figure out what was wrong, and Paula did also. You 
did not give up, and you have also maintained this unbelievably 
positive attitude, which is really inspiring.
    Looking back at your own battle against Lyme disease, what 
advice would you give to an individual who is newly diagnosed 
with Lyme or another tick-borne illness?
    Mr. Philbrook. Sure, and Paula mentioned this in her 
testimony. I think you need to be your own advocate right from 
the start. Do not be afraid to bring your physician research 
that you have seen, things that have worked for other people, 
because there is often an individualized approach to treating 
Lyme disease.
    I also would just say to take it very seriously and give 
yourself some time to get better. It is attacking your nervous 
system, so you really need to take that time in your life to 
get better.
    The Chairman. Tell me what you do--I know you have a child 
now, and if you have all been--your family has been outside. Do 
you check yourself when you come back in? Or what do you do on 
the prevention side?
    Mr. Philbrook. Sure. We do a few basic things; like tucking 
your pants into your socks is an easy way to help prevent ticks 
from entering your body.
    The most important thing we have done, honestly, is a very 
simple step, which is take a shower as soon as we get back 
inside, whether it is hiking, gardening, just being outside at 
all, because a lot of times, at least in our experience, the 
ticks have not attached yet and they wash right off and down 
the drain, and that has been a huge preventative step we have 
taken.
    Obviously, watching much more carefully my daughter than 
probably most people, but, you know, you check behind the ears, 
you check in the hair. Vivien Leigh, who is in the audience, 
did a great service to Mainers and kind of went through a lot 
of different ways people prevent Lyme disease and different 
treatment options as well.
    The Chairman. Thank you.
    Yes, Dr. McCloy?
    Dr. McCloy. One thing I try to educate my patients about is 
that daily tick check, really 365 days a year, and making it 
part of your daily personal hygiene. So you brush your teeth at 
night, you do a tick check, and what I tell my patients is you 
are trying to find a poppy seed on your body, that is how big 
some of these ticks are. So find the poppy seed, check your 
partner, make it fun--you know, check your kids. So that is 
part of your daily routine.
    The Chairman. Thank you. That is good advice.
    Ms. Jackson Jones, you talked about the work that you have 
done. Could you tell us a little bit--I know you put on an 
annual conference, and explain a little bit about that 
conference and what its purpose is and what your goals are with 
your organization on the Midcoast.
    Ms. Jackson Jones. It is important to us to get resources 
to people and to introduce them to what all their options are. 
So every year in the spring we hold an annual Midcoast Lyme 
Disease Support and Education conference, and we have it slated 
for April 11th of next year. We had to move it from a small 
community center to the Augusta Civic Center because we grew so 
fast.
    We bring in doctors, researchers, labs, medical facilities, 
all types of businesses that come in, anybody that has a 
connection to Lyme and tick-borne disease. We have Dr. Dill 
come in, and he, you know, shares what the labs are doing. It 
is important to us to bring what is going on around the world 
to the people of Maine, and what better way to do it than to 
bring the speakers in themselves, to bring the researchers in 
to talk about the latest diagnostics. The labs will share what 
their latest tests are available. This is good not only for the 
patients but for the doctors to know what resources are 
available. So the speakers get a chance to present what is new 
in the form of diagnostic testing, treatment, support, and then 
we have anywhere from 100 to 125 exhibitors there where people 
can go up and actually network for free and get firsthand, one-
on-one experience with them, talk to the many different 
providers. If you are in the market for a new Lyme provider and 
you just do not know what Dr. McCloy offers or what somebody 
else offers, talk to them. They have all their information 
there. You can talk to them, set something up. You can talk to 
the different labs, find out what testing is going on. You can 
talk to the different treatment companies that are there and 
ask, you know, ``What is new? What are you doing to combat 
Babesia symptoms?''--then talk to other people that are there 
encouraging exercise and food and stress reduction.
    More importantly, we do it all for free. It does not cost 
anything to walk through those doors. We get Federal grants. We 
get State grants. We get a lot of donations. We do charge our 
exhibitors to have a booth space there, and we make sure that 
it is always free. If somebody has got $20 left to their name, 
I mean, to put that in their tank for gas, just to show up to 
get connected to resources, we want to make sure that that 
happens.
    The Chairman. That makes a great deal of sense, and I know 
your conference is extremely valuable in educating people.
    Dr. McCloy, it sounds to me, when we listen to Paula's and 
Chris' experience, that there is not a one-size-fits-all 
approach to tick-borne illnesses. Has that been your 
experience, that you have to tailor it to the individual?
    Dr. McCloy. Absolutely. Yes, the disease affects different 
people in different ways, so it depends on which systems of 
their body it is affecting. That is why it is called ``the 
great mimicker'' these days. It mimics a lot of other illnesses 
out there.
    The diagnosis is quite challenging, too. A lot of 
physicians go with what is called a ``clinical diagnosis,'' 
meaning that if this person presents with a good story, if they 
have been in a Lyme-endemic area, they are outdoors, they get 
these illnesses, these symptoms present, that you need to rule 
out the other diseases that can cause those same symptoms, but 
if they have got 36 out of 38 symptoms of Lyme disease, they 
probably have Lyme disease, but you still have to do your due 
diligence as a physician and rule out the lupus and the 
autoimmune conditions and the fibromyalgia and all these other 
things that could present similarly, so it takes a lot of time. 
It is quite challenging to do that as a physician. I think that 
is one of the limitations in our kind of conventional medical 
care system, where the physician might have 7 to 11 minutes 
with a patient per visit. It is hard to figure it out in that 
amount of time given.
    The Chairman. I would think that it would be.
    Dr. Dill, if the TICK Act were to become law, which I am 
determined that it will, how would it be helpful to you and the 
important work that you are doing at the university?
    Dr. Dill. I think one of the things that is happening, of 
course, there are lots of threats coming in with the ticks. 
There are new species knocking on our door. There are new 
diseases associated with them, and even if you just take Lyme 
disease, there are several different strains of the disease, 
and some are more virulent than others.
    Some of the things that would help with us is that I think 
that even though the stage has been really good to us, as you 
can see looking at this facility, and in other ways funding 
still has not kept up with anywhere what it needs to be with 
education and management strategies, surveillance, and as we 
were talking as we walked through here, we could probably hire 
25 people just in the tick lab in the State of Maine and not 
make a dent in all the research and that type of thing that 
needs to be done, so it would just be an awesome, you know, 
boost to the research side of the community here at the 
university, the Maine Medical Center, the CDC. We all work 
together, and it would be a great boost to all of us.
    The Chairman. Thank you.
    Dr. Petersen, the TICK Act would also reauthorize the CDC's 
Regional Centers of Excellence for Vector-borne Diseases at $10 
million per year for each of the next 5 years, and I am worried 
because the funding for those centers expires next year at the 
end of the fiscal year, so I want to make sure that does not 
happen, and that is part of the TICK Act as well.
    Could you share with us how these centers have advanced our 
understanding of tick-borne diseases and why we should continue 
to fund them?
    Dr. Petersen. Yes, thank you for the question. The Centers 
of Excellence is a new concept that we had following the Zika 
virus epidemic, and the idea was to try and merge academic 
institutions with State and local health departments and 
develop communities of practice in their areas, among multiple 
States, as well as trying to train the next generation of 
medical entomologists, like Dr. Dill, which he can testify to 
the fact that there are very few medical entomologists right 
now. You mentioned malaria. The CDC, half the staff of CDC used 
to be in the mid-1940's in entomology. Now when the Zika virus 
epidemic happened, out of our staff of 12,000 or so, we had 12 
medical entomologists, so we need to rebuild this whole field.
    Some of the examples of the work that the Centers of 
Excellence have done, one was just to do the tick surveillance, 
for example. Not only would we want to do more in Maine, but we 
would want to do more around the whole country, develop a true 
national tick surveillance network in all the States.
    Another thing that we are doing here with the Northeast 
Center of Excellence, for example, is working on this new Asian 
longhorned tick, trying to figure out what diseases it spreads, 
where it is, you know, how it infests animals, how it infests 
people, and so that has been a very important part.
    We are also working with the various Centers of Excellence 
on developing better diagnostic tests. As you heard, it was a 
huge problem with many of the diseases we deal with, so at CDC 
we have a certain capacity, you know, we have a certain staff, 
but by incorporating all these Centers of Excellence around the 
country, it enabled all of our efforts to expand with our 
university partners, which has been very, very critical and 
actually has worked well beyond my wildest dreams.
    The Chairman. That is great to hear. Thank you.
    Would any of our witnesses like to add anything before we 
close the hearing? Is there any issue that you want to make 
sure is on the record that I did not touch on through questions 
or testimony? Paula.
    Ms. Jackson Jones. I think the one thing that most patients 
can agree on is if we miss the window, the early window of 
opportunity where our infection moves from acute to chronic, 
that is where things get really muddy. That is where the 
diagnostic tools start to fail us. That is where the treatment 
options--there are no instructions. Everything that has ever 
been written, including in the ICD-10 code for insurance, that 
has all been written for acute, so one of the biggest hurdles 
is, you know, once you outgrow that window and you move into 
Stage II, Stage III, Stage IV, there are no instructions for 
doctors at that point. They are trying to make you fit into 
that acute box, and that acute box says you only get 2 weeks of 
treatment, and they are trying to be creative and think outside 
the box and think, ``What can we call this so that the 
insurances will cover it?'' If the doctors cannot even give it 
a name, how can they treat it?
    I would like to see--and that is something that I would 
like to see at a national level. I think we need to give it a 
name. We need to agree on what we are going to call it. We need 
to give it an insurance code, and then we need to agree on how 
we are going to approach it for treatment, but as Senator 
Dill--excuse me, Dr. Dill----and Dr. Petersen both alluded, I 
mean, even like with the vaccine, you know, with a treatment 
plan, it is only going to go after one thing. If you have two 
or three co-infections, things start to get a little muddy, so 
I think having treatment options is the answer and stop making 
it so cookie-cutter. If we have to give it a cookie-cutter 
name, then we give it an ICD-10 code and we let the doctors go 
from there and treat their patients.
    The Chairman. Very good points. Thank you.
    Dr. Dill?
    Dr. Dill. I would just add that when we are talking about 
the statistics on the amount of Lyme disease, et cetera, the 
one thing I did not mention and it was just brought up was 
about 8 percent of the ticks tested have had co-infections, so 
it is prevalent. There is more than one disease associated with 
an individual tick, and you may be looking at one disease, and 
you actually have two or three, so it is crucial all the way 
around.
    The Chairman. Thank you.
    Dr. Petersen?
    Dr. Petersen. Yes, I think one thing that is important is 
that we absolutely need a very large-scale project or a big 
effort to try and figure out how to better control these ticks, 
but in the meantime, I think is very important that people 
protect themselves against tick bites by wearing permethrin-
treated clothing, by putting on insect repellent, by tick-
proofing their yard, because you have heard about some of the 
devastating effects of some of these tick-borne diseases, and 
the best way to prevent that is to prevent it, and so it is 
very important that State and local health departments work 
with academic institutions, private organizations, you know, 
patient groups to try and spread the world about how people can 
actually prevent tick bites.
    I met with the Maine CDC yesterday. They are doing an 
outstanding job on trying to educate the public on how to do 
it. It is not so easy. These ticks are very small, but people 
need to remain vigilant, and we keep--we need to push that 
effort to make people aware of these kinds of problems and how 
to prevent them.
    The Chairman. Thank you.
    Dr. McCloy?
    Dr. McCloy. We touched briefly on the financial impact of 
this disease on patients and individuals and also touched 
briefly on the insurance companies' coverage of the treatments. 
As a physician, I often see my patients running up against that 
barrier where their insurance companies do not approve more 
than, say, 4 weeks or so of antibiotics, and we have to help 
them navigate appeals processes, et cetera.
    Some States have passed legislation mandating the insurance 
companies to cover for a longer-term treatment, but it has been 
a little piecemeal, so, again, as part of a national effort, it 
would be nice to see some sort of legislative effort to mandate 
insurance companies to cover not only longer-term antibiotics 
but also the other integrative therapies that Paula has 
discussed. You know, all these various impacts on her body, you 
cannot just throw 4 weeks of antibiotics at that kind of a 
situation. You have to treat it holistically and 
comprehensively, and that financial limitation is tough for 
patients, so having insurance coverage mandated would be a huge 
help for these patients.
    The Chairman. Well, her $250,000 in medical bills is just 
such a burden on top of the disease. It is just incredible, and 
I think the point is well taken that insurers have not figured 
out that there are chronic cases and with diverse symptoms and 
that it does not fit neatly into one insurance code for 
reimbursement, so those are both good points.
    Chris, we are going to allow you to finish up the testimony 
today.
    Mr. Philbrook. Thank you. I hope this act just generates--
and it is generating awareness for people to be thinking about 
this. Dr. Petersen mentioned prevention, and that is a key 
piece, but everybody in this room can be an advocate for 
themselves, can ask their friends that may be going through 
something like this, if they have asked their doctor about Lyme 
disease and just consider it as a possibility, and then just 
keep asking the question.
    I am excited that this act is on the table because I think 
it is generating a significant amount of awareness that this 
disease deserves, so thank you.
    The Chairman. Thank you.
    I want to thank all of our witnesses today for sharing your 
stories, your expertise, and your insights. Your testimony 
today shines a bright lime-green spotlight on the growing 
crisis of tick-borne illnesses and is a spur to action.
    We live in a State where we love being outside. It is part 
of our heritage in Maine, to be outside, to take that walk in 
the woods, to go hunting, to do gardening, and we want to be 
able to continue to enjoy what makes Maine so special, and the 
great outdoors and the recreational opportunities it offers 
clearly are part of that, so that is why I have become really 
determined to look for alternative, broader approaches to 
attacking this epidemic.
    Again, I will start where we began, and that is, on a per 
capita basis, Maine has the highest incidence of Lyme disease 
in the Nation, so we are particularly affected, and of those 
Mainers and of people nationwide who get tick-borne illnesses, 
those aged 65 and older are at particular risk. Since Maine is 
the oldest State in the Nation by median age, that adds to our 
vulnerability.
    Prevention remains so important, as we have just heard from 
Chris and other witnesses, being an advocate for yourself, but 
I also believe that we need to turn the corner and adopt a 
public health approach and make this a national priority just 
as we did with the eradication of malaria so many years ago, 
and if we can join forces and collect data and share 
information, disseminate best practices, raise public 
awareness, educate health care professionals, work with the 
researchers in the labs like here at the university, which does 
such a great job, and work with our partners at the Federal 
level and with those Regional Centers of Excellence, I believe 
we can make a real difference.
    I am grateful for all of our panelists for adding to my 
knowledge as I continue to advocate in Washington for passage 
of the TICK Act. I think it truly would help us turn the corner 
and adopt a whole new public health approach to combating these 
tick-borne illnesses, so I want to thank all of you for being 
here today and helping us change the trajectory of tick-borne 
diseases.
    I also want to thank my staff, Sara in particular for her 
very hard work on this issue. She is a public health expert and 
has helped in developing this new approach that we are going to 
be pushing hard.
    My thanks to the University of Maine, the Cooperative 
Extension Service, and the tick lab in particular for 
graciously hosting this event. I am very proud of the work that 
is being done here at the university and hope that with the 
additional funding that would be available through the TICK Act 
that we can expand that work and give you even more resources.
    I have a feeling, after this hearing and with the 
dissemination of these kits, that that number of ticks that are 
sent into the lab may well increase, and that is a good thing, 
but I know you need the staff to handle it as well.
    The hearing record will remain open until Friday, September 
13th, in case there are additional questions that we may be 
sending your way, but again, my great appreciation to all of 
you for being here today. You added immensely to our knowledge.
    My thanks to all of you who have participated in so many 
ways, so many of you who are sitting in the audience have 
shared your personal stories with us and your scientific 
expertise in helping us draft the TICK Act, so I am very 
grateful for that.
    This hearing is adjourned. It is official. Thank you.
    [Whereupon, at 11:26 a.m., the Committee was adjourned.]
    
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                                APPENDIX

   
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                      Prepared Witness Statements

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                       Statements for the Record

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