TOUCHED BY LYME: “Lyme Action Fly-In” planned for Washington DC

Comment; The point is made that just because funding has been allocated in advance, does not mean that congress will fund it each year–it’s a good idea to have “boots on the ground” to convince our legislators that these funds are necessary for this illness.

Getting the Kay Hagan TICK Act signed into law was an important step in the right direction for the Lyme community. But the job isn’t over yet.

You’ll recall that the TICK Act recommends $150 million for vector-borne diseases over a five-year period. However, federal funding happens on a year-by-year basis. Thus, Congress must decide every year how much money goes where.

So the immediate challenge, relative to funding, is to persuade our Congressional representatives to appropriate $30 million for tick-borne diseases in Fiscal Year 2021. (The coming fiscal year runs from Oct 1, 2020 to Sept. 30, 2021.)

And that’s not all we want from upcoming Congressional appropriations. We also want to triple the National Institutes of Health’s projected Lyme budget, from $31 million to $93 million.

And increase the Funding for the Department of Defense’s Congressionally Directed Tick-Borne Disease Research Program.

All of these items were included in the federal budget passed last month by Congress and signed by the President. The budget is a policy statement, essentially saying “We think we should spend this much money on these specific things.”

The appropriations process–the important next step–is where the rubber actually hits the road. It officially gives the money for the project in question. (Sometimes items are included in the budget, but never end up getting funded. Obviously, that’s not what we’re going for here.)

“Nothing is going to change unless we have more money for Lyme disease,” says Bonnie Crater, one of the founders of the Center for Lyme Action (CLA). It’s a new lobbying group set up specifically to help increase federal funding for Lyme and other tick-borne diseases.

Lyme Action Fly-in

To that end, the CLA has organized a “Lyme Advocacy Day,” also called the “Lyme Action Fly-in.” It’s scheduled for February 11-12, in Washington DC.

The idea is for members of the Lyme community from around the country to converge on Washington DC. We’ll meet with lawmakers and their staffs—and ask for the funding we need.

I’m in! How about you?

Tuesday, Feb. 11, will be an education and training day for the visiting advocates, as well as a reception with lawmakers. There will be speakers and a dinner. That day’s events run from 2 – 8 pm.

Wednesday, Feb. 12, will be the actual Lobby Day, where teams of advocates will call on legislative offices. (Appointments will be set up in advance.) Events will run from 7:30 am (breakfast) to 6 pm.

We’ll have information packets and talking points from the CLA. And we’ll also have the chance to tell the people we meet with why these Lyme appropriations mean so much to us.

The CLA requests a $65 fee for each advocate, to help defray food and beverage costs over the two-day event.

I know this Advocacy Day isn’t something that everybody can do, for all sorts of reasons. But if you can, I hope you’ll join us. Click here to find out more and to register for the event.

TOUCHED BY LYME is written by Dorothy Kupcha Leland,’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at

Dr. Raymond Oenbrink