On Thursday, Sept. 5, I was invited by Sen. Susan Collins to give witness and testify at the United States Senate Aging Committee hearing on the TICK Act: An Urgent Public Health Response to Tick-Borne Diseases.
Although this was a great honor for me, it was not an easy task for me to summarize my personal story and convey the continued suffering of others condensed into five minutes. Thankfully, I was able to elaborate more in my four-page, double-sided written testimony with a 58-page appendix.
Going into this event, I had overwhelming anxiety. This was not the first time a politician has spoken up with the promise to make things better, and it is here that I want to interject this larger than life statement: “There is no one person who has the power to fix this!”
There are many people in many positions that are needed to help further a very broken cause, to help institute the changes that need to be made, and to mend a very broken system. My anxiety came from knowing that we’ve been down this road before and the outcome did not make a difference in the lives of those suffering from tick-borne disease.
It’s 2019 and we are still losing people to this disease.
So, I was going into this with the weight of those we’ve lost on my shoulders, with the voices of those who continue to suffer on my mind, and knowing that the responsibility to convey all this in a very public setting was not lost on me.
The field hearing was held in Orono at the University of Maine Cooperative Extension Tick Lab. It was by invitation only and the small room was quite packed. Among the invited guests, there were reporters, patients, medical providers, representatives from the Maine Center for Disease Control & Prevention, as well as the staff from the tick lab.
I continued to feel very overwhelmed and emotional when Collins entered the building. As she greeted people in the hallway and turned to me, I put forth my hand and with a shaky voice said, “Good morning, Senator Collins. I am Paula Jackson Jones.”
That was all that was needed to be said when she grabbed my hands and embraced me in a hug. You see, although I had been working closely with her office on the TICK Act bill, this was the time I was meeting her in person.
Her words brought forth tears as she acknowledged my personal suffering and then thanked me for everything I was doing. When I humbly stated that I was “merely one of thousands of foot soldiers in this army,” she grabbed me by the shoulders, looked me straight in the eyes, and said, “But, Paula, you are our general,” and I immediately found renewed strength in her tone.
Collins shares: “To knock out Lyme and other tick-borne diseases, we need a unified approach with leadership at the federal level and resources at the local level. These diseases present grave risks to our public health and serious harm to our families. The sooner we acknowledge these risks and coordinate effort to overcome them, the better for all of us who enjoy the outdoors. The TICK Act does just that by applying a three-pronged public health approach to address Lyme and other vector-borne diseases:
• Establishes an Office of Oversight and Coordination at HHS to develop a National Strategy, expand research, improve testing, and coordinate common efforts with DOD, USDA, EPA, and the Departments of Interior and Homeland Security
• Reauthorizes Regional Centers of Excellence in Vector Borne Disease at $10 million for each of FY2021-FY2026. These Centers collaborate with academia and public health agencies for surveillance, prevention, outbreak response.
• Authorizes CDC Grants at $20 million for each of FY2021-FY2026 to State health departments to build a public health infrastructure for Lyme and other tick and vectorborne diseases, and expand initiatives through public-private partnerships.”
Testifying at the witness table with me sat Dr. Lyle Petersen, the director of the division of vector-borne diseases, National Center for Emerging and Zoonotic Infectious Diseases for the federal Centers of Disease Control and Prevention; Dr. Jim Dill, pest control specialist for the University of Maine Cooperative Extension Tick Lab; and Maine senator Dr. Sean McCloy, the medical D\director for Integrative Health Center of Maine and Christopher Philbrook, a fellow patient advocate, a former aide to Collins, and a board member of Project Lyme.
(You can watch the full hearing here: collins.senate.gov/newsroom/senators-collins-smith-introduce-legislation-address-rising-number-lyme-and-tick-borne?fbclid=IwAR1Ed94pu5GdRCW928wuP_CLJs0IfkwDYV9OMo_zzAQiFuEug5fSVTZk6gU.)
The day before the hearing, I had the opportunity to meet with Petersen and his associate, Dr. Susanna Visser, the associate director for policy. I was a bit apprehensive about the meeting and wasn’t sure how freely I should speak until they asked me to share my personal story and not to hold back. I was assured that I could (and should) say anything I wanted about anyone and anything because their job was to collect all the broken pieces and help determine a plan for change.
So with that, I unleashed 10 years of pain and suffering, of loss and frustration, of roadblocks and redundancy, of lip service and disappointment, and at the end, I was shaking, but I held back my tears until I heard, “I’m sorry that we failed you.”
These people didn’t personally hurt me but they belong to a group that has hurt and failed hundreds of thousands of patients over the past four decades. Now, I’m going to remind to you that “there is no one person who has the power to fix this!” But there are many people in positions to promote change, and in my 10 years of integration in the Lyme and tick-borne disease community, for the first time in a very long time, I felt hope.
Let me clarify that I normally feel hopeful and make it my daily duty to instill hope in others. But this is different. This is acknowledgement at a federal level that matches the cries from the trenches. It is an acknowledgement of everything that is broken, that has failed, and of what needs to be done.
Rome was not built in a day and it will not be undone in a day. Not everything needs to be discarded, but we need a group that is able and willing to go through this, piece by piece, and repair, remove, or replace in order to rehabilitate and reform a broken and heavily damaged system.
And there will be pushback from all sides. There are groups that feel that they need to have their anger and resentment heard and validated. There are groups that think this is all just a media hype and insist on following outdated guidelines and protocols. And there are groups that are just wandering aimlessly without hope of any change.
So, there are layers and layers and layers that have to be removed and dealt with, but for the first time, I felt hope from above. I heard that testing is not reliable and that we need better diagnostic tools to end the growth of suffering. I heard that we need to have a better understanding of co-infections and that treatment is not “cookie cutter.” I listened closely as each of my fellow witnesses spoke in great detail about why the TICK Act bill was needed and what it would accomplish if/when passed into law.
You see, it is a federal bill that would trickle down and reach the trenches. I made sure of that when I was asked to give input to the wording of the bill. We have no right passing laws if they are not going to be enforced and make a difference in people’s lives. In Maine, we have several laws regarding Lyme and tick-borne disease, but to date, nothing that has made a huge difference for patients or providers.
So, at the end of the hearing, when Collins asked if anyone had anything else that they wanted to be added to the congressional record, my hand flew into the air. I had spoken with her staff and shared some thoughts that they felt were vital to this bill, but until this moment, I had not heard anyone mention it. So I seized the moment and stated that “not only do we need better testing and treatment options, we need diagnostic codes so that as a patient’s symptoms transition from acute to chronic, the medical providers will have direction for treatment and the insurance companies can accept and cover. If we can’t agree on what to call it, how can we possibly agree on treating it?”
The senator agreed with me, and Dill further backed up my statement by stating that “of the ticks tested in the lab, about 8 percent have more than one tick-borne disease (also known as a co-infection, meaning more than one).”
After all this time, we’re slowly getting on the same page, we’re all saying the same thing, and we’re hearing the suffering and the brokenness being acknowledged.
I will leave this with you with this thought: $75 billion per year is the total direct and indirect cost of Lyme disease. Those who have lost their lives to tick-borne disease can not even have it listed on the death certificate as the causative agent. With an autopsy, maybe a contributing factor, but until the seriousness of tick-borne disease is given the attention and respect that it so deserves, patients and families will continue to suffer and lose greatly. Passing the TICK Act bill into law would provide a much-needed and overdue lifeline to patients and doctors everywhere.
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, a nonprofit 501(c)(3) organization; the Maine partner of the national Lyme Disease Association; and member of Maine CDC’s Vector-borne Disease Workgroup. She is active in Lyme legislation. Email her at firstname.lastname@example.org or go to mldse.org for more information.)