More than 200 Lyme advocates from throughout the US took to their computers on February 24, as part of the 2021 Virtual Lyme Fly-in.

Sponsored by the Center for Lyme Action, it was a concerted effort to educate Congressional representatives about the need for increased funding for Lyme disease.

Last year’s event included actual flying (or trains or automobiles), as people traveled to Washington DC for in-person meetings. (And, when all was said and done, we got much of what we asked for in 2020.)

Due to the pandemic, however, this year’s “Fly-In” needed to happen over zoom. Actually, this made it possible for more people to participate.

Appropriations process

Congress is getting ready to begin its annual appropriations process. This is the method by which it decides how much government money will be spent–and what it will be spent on.

These are the Center for Lyme Action’s Fiscal Year 2022 appropriations requests:

Fund the Kay Hagan Tick Act for Lyme-related research at the CDC ($30M total). (The Kay Hagan Tick Act was signed into law in 2019, but funding must be re-appropriated every year.)

Increase research budget at NIH for Lyme and tick-borne diseases ($101M)

Increase funding for Department of Defense research related to protecting service members from tick-borne diseases ($12M)

Allocate funds for implementation of  the National Public Health Framework for Prevention and Control of Vector-Borne Diseases in Humans ($5M total)

Allocate funds to implement the LymeX program. ($5M)

Allocate funds to CDC to develop surveillance protocols for persistent Lyme disease. ($5M) (Currently, the CDC only takes note of acute Lyme disease cases.

Meeting with Congressional staffers

In addition to discussing WHAT we want, I think one of the most important parts of the meeting was telling them WHY we want it.

Every meeting was a little different, of course, depending on who was involved. But here’s generally how things went for the five meetings I joined in on. We started with each individual giving a short statement about why they were there. Things like:

“I’ve had Lyme disease for 15 years and I haven’t been able to work.”

“I have Lyme and my two children have Lyme. Our insurance won’t cover it and we have no money for treatment.”

“My daughter has been bedridden for six years.”

“I lost my house, my marriage, and my family.”

Then, one person would take the lead, briefly explaining each of our six requests.

I found that the staffers we spoke to listened intently and asked good questions. We have also made contacts we can follow up with, as the appropriations process plays out in the coming months.

Here are some social media posts from folks who also took part in the Fly-In.

Bonnie Crater, co-founder of the Center for Lyme Action, said she was thrilled that so many advocates had so many meetings with Congress members and their staffs.

“We are building off of our successes from last year. But we all know we have a long way to go for Lyme disease to be fully and properly funded by the federal government. It’s wonderful to have so many Lyme advocates presenting the case to their legislators. I am optimistic that we will continue to make good progress.”

Stay tuned for ways you can get involved in the future.

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