Last week, I spent three days in Washington, D.C. meeting with politicians, participating in a Congressional luncheon and networking with other Lyme advocates, all in a focused effort to build support for the U.S. Senate TICK Act bill (S1657), which is quickly moving forward. By the time you’re reading this, it will be presented before the HELP committee on Thursday, Oct. 31 and with fingers crossed and prayers said, hopefully will pass through with favor. Advocates worked long hours, meeting with their U.S. Senators in hopes of gaining support and possibly more co-sponsors. I’m please to report that Maine has one hundred percent, bi-partisanship support from both of our U.S. Senators — Susan Collins who wrote the bill and Angus King who is a co-sponsor — as well as from Representatives Chellie Pingree and Jared Golden, who are also co-sponsoring an identical House bill. Maine is unanimous in its support for better research, better education for physicians and better access to diagnostic and treatment resources for patients.

Maine set the bar high and the other advocates are scrambling to get their states onboard as well. Advocates in all 50 U.S. states have reached out to their U.S. Senators, explaining the need for their support for this bill.

In addition to individual constituent emails, advocates and Lyme organizations drafted a letter to the chairman and co-chair of the HELP committee, in a unified show of support for this bill to pass. That letter reads as follows:

Dear Mr. Chairman and Ranking Member Murray:

We are writing to support immediate passage S. 1657, the TICK Act, the Ticks: Identify, Control and Knockout Act. This important bipartisan legislation, introduced by Senators Susan Collins (R-ME) and Tina Smith (D-MN), would significantly improve coordination at the Federal level and provide communities and states with resources for prevention, early detection, and treatment of Lyme disease and other tick-borne diseases.

Specifically, the legislation would:

(1) Establish an Office of Oversight and Coordination at HHS, to develop a National Strategy to expand research and improve testing and treatment affordability to fight tick-borne diseases;

(2) Reauthorize $10 million per year over the next five years for Regional Centers of Excellence in Vector-Borne Disease. These Centers collaborate with academia and public health agencies for surveillance, prevention, outbreak response; and

(3) Authorize $20 million per year over the next five years in CDC Grants to States and communities across the country to raise awareness about Lyme and other tick-borne diseases, support early detection and diagnosis, and improve treatment.

Passage of S.1657, the TICK Act, is urgently needed. The overall number of Americans infected by Lyme and tick-borne diseases is rising and there is no end in sight. Last year, there were 450,000 cases of Lyme, a 1,400 percent increase from 2003. Additionally, Lyme disease costs our Nation more than $75 billion per year, including direct medical costs and indirect costs such as loss of work. The cost of this bill is relatively small when compared to the total financial burden on Americans and, most importantly, patients with Lyme disease.

We urge the Health, Education, Welfare and Pensions Committee join the effort to combat Lyme and other tick-borne diseases by passing S.1657, TICK Act, at your next full Committee markup on Thursday, Oct. 31, 2019 and establish a firm and appropriate foundation to advance prevention, detection and treatment of Lyme disease and other tick-borne diseases.

Sincerely,

Center for Lyme Action

And a list of supporting organizations

If you are reading this and would like to help, please contact your U.S. Senator and Representative. Ask for their support for Senate TICK Act bill S1657 and or House bill HR3073. Together, we can use our voices and personal experiences to make a difference for those affected by tick-borne disease.

In January 1985, Michael Jackson and Lionel Richie came together and wrote a song, “We Are the World,” a song that reverberated all around the world. People came together with a unified message that demand action and they got just that:

There comes a time, when we heed a certain call

When the world must come together as one

There are people dying

Oh, and it's time to lend a hand to life

The greatest gift of all

We can't go on, pretending day-by-day

That someone, somewhere soon make a change

We're all a part of God's great big family

And the truth, you know, love is all we need

We are the world

We are the children

We are the ones who make a brighter day, so let's start giving

There's a choice we're making

We're saving our own lives

It's true we'll make a better day, just you and me

This is our time, time to use our voice, time to make a difference in the lives of those who continue to suffer. You might be reading this in the comfort of your warm home or maybe in the break room at your job or maybe even in the local coffee house. But if you’re reading this and wondering “What can I possibly do?” here it is ~ reach out, use your voice, connect with your contacts around the US (personal and professional) and ask them to use their voice and reach out. The letters are already drafted, contact me or go to my website and grab it from there. Everyone knows someone in a position to make a difference. Use your voice and help us change the lives for tick-borne disease patients everywhere!

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org or visit www.mldse.org