The deadlines for the following actions are March 19, 10 and 13, respectively. Please do this today, if possible.

By Jeff Crater

The Lyme community had a great success in December, when the Kay Hagan Tick Act was passed into law.

But what can Lyme patients, friends, and relatives do now to increase Federal funding for Lyme disease prevention and research for better diagnostics and cures?

Answer: write your Members of Congress and Senators today.

Ask them to fund the Kay Hagan Tick Act and expand Tick-borne Disease CDMRP by:

1. signing on to the 2 Lyme Caucus letters in the House or
2. signing the Senators Collins and Smith letter and also the Senator Kirsten Gillibrand letter in the US Senate.

If you already know about the Kay Hagan Tick Act and the CDMRP program for tick-borne disease, skip the next sections and use the sample letters to contact your Senators and Congress Member.  We’ve also included a plug for increased funding for Lyme disease research at NIH for Fiscal Year 2021

What is the Kay Hagan Tick ACT?

The Kay Hagan Tick Act is a bipartisan bill that brings greater focus on vector-borne diseases, including Lyme. It was signed into law on December 20, 2019 (P.L. 116-94). It was part of one of two large appropriations bill called a “minibus” instead of the “omnibus,” the all-encompassing appropriations bill funding all federal discretionary spending.

It was named after former Senator Kay Hagan (D-NC), who sadly died of tick-borne Powassan virus on October 28, 2019.

The bill was introduced in the Senate as S.1657 by Senators Susan Collins (R-ME) and Tina Smith (D-MN).

Supported by both Democrats and Republicans, the Tick Act will improve federal coordination of Lyme initiatives and provide additional resources for prevention, early detection, and treatment of Lyme disease and other tick-borne illnesses through the Centers for Disease Control and Preventions (CDC).

Because the bill is an authorization (not an appropriation), we now need to take the second step to get it funded.

What is CDMRP?

CDMRP stands for Congressionally Directed Medical Research Program. This is a program in the Department of Defense that funds research for Tick-borne disease —  largely Lyme disease.

The great thing about this research program is that the decision makers for the grants include doctors, researchers, and other very knowledgeable members of the Lyme community to fund novel projects, in addition to the government staff.

This wonderful program is currently funded at $7 million per year and we want to grow the program to $10-$12 million per year.

How you can help

Want to help encourage more investment in Lyme?  Here’s how:

• Click on these links to find your Representative or find your Senators
• Edit the letters below by inserting your specific information
• Send to your representatives by cutting and pasting the letter into the “contact us” page, emailing the office contact, or physically mailing to the mailing address

We hear all the time from Members of Congress that they want to hear from you so they know how to vote, and, in this case what their priorities will be on appropriations. These appropriations are great way to shape government-funded research on Lyme disease and to infuse greater investment into this growing problem across the United States.  Let your voice be heard!

Jeff Crater, of Falls Church, Virginia, has two children with Lyme disease. He is a co-founder and board member of Center for Lyme Action , is a 501 c-4 organization dedicated to growing federal funding for Lyme disease.

Sample Letters

(The first message below is for senators. The second one is for representatives. Yellow highlights indicate places you should insert your own information.)

FOR SENATORS

[DATE]

[ADDRESS]

Dear __________

[As your constituent, I am OR I am writing on behalf of the ORGANIZATION NAME], asking you to sign on to a bipartisan letter from Senators Susan Collins (R-ME-) and Tina Smith (D-MN) to fund the Kay Hagan Tick Act  as well as an expansion of the DoD’s Tick-borne Disease Research Program (CDMRP).

You will find copies of the letters at these links:

• Kay Hagan Tick Act Funding Letter due March 19
  http://bit.ly/2VLCzz3
• DoD CDMRP Tick-borne Disease Research Program Expansion Funding Letter
  http://bit.ly/39G7CAy

Your support of this funding 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 more than 300,000 new cases of Lyme and more than a million Americans suffer from chronic Lyme conditions around the country.  Our goal is to make Lyme disease easier to diagnose and simple to cure.  Unfortunately, we’re falling short on both fronts, but there’s hope if ample funding is provided to the Lyme disease research community

[Please briefly WRITE YOUR OWN STORY HERE or DELETE. For example: I got Lyme disease in 2015, while hiking on my favorite trail in… The disease has been devastating, and I am still fighting it every day].

Lyme disease costs our nation more than $75 billion per year. This includes direct medical costs and indirect costs such as loss of work. As your constituent, I urge you to join the effort to combat Lyme and other tick-borne diseases by:

• funding the Kay Hagan Tick Act at $30M annually
• increasing Lyme disease research funding at NIH to $93M for better diagnostic and therapies
• ramping-up funding for DOD CDMRP tick-borne disease program from $7M to $12M.

We urge you to become our advocate for this urgently needed, and long overdue, funding.

Sincerely,

[YOUR NAME]

FOR REPRESENTATIVES

[DATE]

[ADDRESS]

Dear __________

[As your constituent, I am OR I am writing on behalf of the ORGANIZATION NAME], asking you to sign on to 2 letters from the bipartisan Lyme Disease Caucus sponsored by co-chairs Chris Smith (R-NJ)) and Collin Peterson (D-MN) to fund the Kay Hagan Tick Act.  This was passed into law on December 20, 2019, to increase appropriations for the DoD CDMRP research program for tick-borne diseases.

You will find copies of the letters at these links:

• Kay Hagan Tick Act Funding Letter to Labor-HHS Appropriators due March 10   http://bit.ly/3ar87ya
• CDMRP Letter to DoD Appropriations Committee due March 13  http://bit.ly/2VR1Esy

Furthermore, we ask you to request an increase for Lyme disease research funding at NIH from $31M to $93M to develop better diagnostic and therapies from the Labor-HHS Appropriations Subcommittee.  Private funders have provided over $100M and it’s time for NIH to build a public-private research partnership.

Your support of this funding 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 more than 300,000 new cases of Lyme and more than a million Americans suffer from chronic Lyme conditions around the country.

[Please WRITE YOUR OWN STORY HERE or DELETE. For example: I got Lyme disease in 2015, while hiking on my favorite trail in… The disease has been devastating, and I am still fighting it everyday].

Lyme disease costs our nation more than $75 billion per year. This includes direct medical costs and indirect costs such as loss of work. As your constituent, I urge you to join the effort to combat Lyme and other tick-borne diseases by funding the Kay Hagan Tick Act, the CDMRP program, boosting NIH Lyme research and becoming an advocate for this urgently needed, and long overdue, funding.

Sincerely,

[YOUR NAME]