EP 90: Center for Lyme Is Hosting A Lyme Fly In and Needs Us to Join!

 Mimi MacLean:
Welcome to the Lyme360 podcast for all things related to Lyme disease and other chronic illnesses. I'm Mimi MacLean, mom of five, founder of Lyme360 and a fellow Lyme Warrior. Tune in each week to hear from doctors, health practitioners and experts to learn about their treatments, struggles and triumphs to help you on your healing journey. I'm here to heal with you.

Mimi MacLean:
Before we get started today I wanted to talk to you about Dr. Bill Rawls. He has written one of my favorite Lyme books, Unlocking Lyme. He's an MD whose life was upended because of Lyme. From this experience he had to change his practice and figured out how to heal himself. Dr. Rawls has created his own line of herbal supplements that support the immune system as a Lyme Warrior. He offers a survey on his website to help determine which supplements you need. Go to lyme360.com/drrawls to learn more about these amazing herbal protocols I have been using.

Mimi MacLean:
Welcome back to Lyme360 podcast. This is your host Mimi MacLean, and today we have on Bonnie Crater, and she's the co-founder and board director of Center for Lyme Action. Bonnie also co-founded and co-chaired Bay Area Lyme Foundation. She is going to be talking us today about her Lyme fly-in that is coming up and she needs your help.

Mimi MacLean:
To get my Detox For Lyme Checklist go to lyme360.com/detox checklist.

Mimi MacLean:
Bonnie, thank you so much for coming on. I wanted to get you on because you started the Center for Lyme Action but you have a kind of timely event coming up that you need people's help and I did it last year so I highly recommend it, it was very informative. It was the Lyme fly-in and you're doing it again this year. So I would love for you to just first talk about the Lyme fly-in and then we'll go onto your organization as well.

Bonnie Crater:
Okay. So yeah, coming up on February 22nd and 23rd we are hosting what's called a fly-in and what a fly-in is is that we get people that are very interested in advocating for more federal funding for Lyme disease together. We train everybody so that everybody's singing off the same hymnal, if you will, and we set up meetings with your congressperson, so your representative in the US Congress, and your two senators, and you might have a few more meetings to help other advocates. You're in a group of typically two, three, four, sometimes bigger if you're from a state that's really populated and has a lot of Lyme advocates, but typically it's two, three, four people.

Bonnie Crater:
And you get to talk with the staff members about Lyme disease because a lot of times they're young people, they work in these offices and they don't really know much about Lyme disease. So we're educating them and then that education translates into requests, appropriations requests, to increase funding for Lyme and tick-borne disease. So we're not limited to just Lyme disease. I say Lyme disease as kind of a shorthand but it's really Lyme and tick-borne disease that we're working on.

Mimi MacLean:
Right, and, you know, I think I've learned over the past two years or so doing this, that it doesn't even take a lot of people reaching out to their congressmen or senators. It only takes like less than 10 or something like that for them to then have it put on their docket to start researching it, to bring it to their attention, right, so you might think, "Oh my voice doesn't matter," but it really does.

Bonnie Crater:
Yeah. It's literally a couple people from each state can make a huge, huge difference and we've been very successful so far.

Mimi MacLean:
Yeah. I was going to say talk about last year, what happened? Like just the difference between 2020 and 2021, by doing the Lyme fly-in, has really had an impact.

Bonnie Crater:
Yeah, so we started the organization in FY 19 and we had our first fly-in for the FY 21 budget. FY 20 was before we started doing anything and the total Lyme funding was 55 million in the federal government, which is at, you know... Think about the trillion-dollar packages that are being passed. It's a very, very small amount of money. It sounds like a lot of money to all of us but it's really a very small amount of money. So our aim was to try to grow that to a half a billion or a billion, that's what we're trying to do with the theory behind it, right, that the more money that these people in the federal government have, the more things that they can do to help us, but without changes in the budget, like increases in the budget, they literally can't do, their hands are tied, they can't really do anything.

Bonnie Crater:
So for FY 20 we were at 55 million. For the next year, after a thousand Lyme advocates across the country took various actions, we were at 108 million and that's almost doubling so that's kind of cool. For FY 22 we've seen increases of 28 million on top of that which is great and the FY 22 budget hasn't quite been fully approved yet but it's making its way so we'll see how that all plays out. But now we're back again working on FY 23 so, you know, it's about consistency, right?

Mimi MacLean:
Yeah, and it's about getting the message out, like having the Kagan Act, right? Was she a state congressman or state senator, or what?

Bonnie Crater:
Yeah, she's the senator, the senior senator from Maine.

Mimi MacLean:
Who is the senator that passed? There was someone who passed.

Bonnie Crater:
Oh yeah, Kay Hagan. So Kay Hagan was the senator from North Carolina and she passed away from, I think it was Powassan virus, but it was a tick-borne illness. Susan Collins and Tina Smith... So Susan Collins is the Republican and Tina Smith is a Democrat, the cool thing about this is it's all bipartisan, I mean we're literally bringing people together over Lyme disease, anyway, [crosstalk 00:05:39] yeah, which is great. Susan Collins created this Kay Hagan Tick Act.

Bonnie Crater:
It was actually based on the work that Chris Smith from New Jersey, he's a representative from kind of the middle part of New Jersey, and Chris, bless his heart, he's been working on Lyme disease for like a million years. Anyways, he'd had this legislation he'd been trying to pass. Susan Collins picked it up in the Senate. She and Tina Smith were able to partner together. We worked to get over 30 co-sponsors which is a lot of co-sponsors so that means that there's enthusiasm to try to get this thing passed and so they were able to keep slipping in to the Appropriations Bill and that was passed in December 2019. Keep in mind that authorization bills, on average, take seven years to pass. This thing passed in three months.

Mimi MacLean:
That's amazing.

Bonnie Crater:
So I just want to say that the work, yeah, it's amazing, the work that the advocates do, it's very meaningful and actually does move the ball. It's amazing but we can't do it without everybody working on it so we're just trying to organize and see if we can get a few more people to join us on February 22nd and 23rd to help us with this next round of appropriations.

Mimi MacLean:
Right. And then I did a little digging when I was on the California one last year and I found out that my senator that I was talking to, his kids had Lyme.

Bonnie Crater:
Yeah. You'll see that.

Mimi MacLean:
So you need to do a little research if you're going to call, just to find out, because that also helps because when you're talking to somebody in his office, you can say, "And just to let you know, I noticed that his kids are struggling with this too." Right? There are some senators and congressmen that have children or their personal experiences with the Lyme.

Bonnie Crater:
Yeah, and when you talk to the staff or you talk to a senator or congressperson, you'll find out that they had Lyme disease. It's very interesting. You know, 476,000 people get Lyme disease every year, that's the current CDC estimate, and so it's likely that out of the 535 people that are serving us in Congress, some of them have had Lyme disease or their kids have Lyme disease.

Mimi MacLean:
Correct. Now, can you talk a little bit about, I know this is not in your wheelhouse or in your realm, but I think maybe you'll know the story behind it, I saw that they just proposed a bill to find out, to release, to find out if it was a bioweapon or not. Do you know anything about that?

Bonnie Crater:
Yeah. That was also a Chris Smith bill and what happened was our friend, Kris Newby, wrote this awesome book.

Mimi MacLean:
I know, I interviewed her too.

Bonnie Crater:
Did you read it?

Mimi MacLean:
Yes. And I read it and I interviewed her and I read that book right before COVID started.

Bonnie Crater:
Oh yeah.

Mimi MacLean:
And so right when COVID started, I was like, "Wait a second. There is just too much similarity." If you haven't read that book, go read it or go listen to my podcast whatever. I got off and I was like, "Oh my God, that was the most awesome podcast." I felt like I was living in a thriller movie. I was like, "This is so cool."

Bonnie Crater:
Yeah. I hope she's wrong but anyway it's a very interesting book. It's definitely a page turner, a combination of thriller and Kris' personal story, which is also very interesting but, yeah.

Bonnie Crater:
So about that, so it all started with the book Bitten and Chris Smith got a hold of the book and I guess he must have read it because he initiated this legislation and it was actually included in a recent bill so the defense department needs to respond to Congress about this investigation. So yeah, we'll see what happens.

Mimi MacLean:
I am curious. Yeah. I'm [crosstalk 00:08:57]. So tell me about your Center for Lyme Action. Like, why did you start it? What's your personal experience?

Bonnie Crater:
Yeah. So my story is that when my daughter was 11, I was a Girl Scout Mom, right, and there were six girls and six moms in the girl scout troop. And one year, two of the six moms, so 30% of our group, were diagnosed with Lyme disease and they had serious, persistent Lyme disease. They had very chronic symptoms, crawling out, yeah, can't get to the bathroom kind of very, very bad symptoms. And the Girl Scout Moms we were horrified by all this. We were like, "Oh my God, our friends are really, really sick." And we didn't understand it so we started a foundation called the Bay Area Lyme Foundation. I live in California.

Mimi MacLean:
Oh, I didn't realize you were one of the founders for that. I mean, that's an amazing organization too.

Bonnie Crater:
So it started off as this community project because we were the Girl Scout Moms but one of the folks that got sick, my really good friend, Laure Woods, she suggested that we actually start a foundation. She's, "My family does foundations so we should start a foundation to see if we can try to make a difference in this area." And so it started off as a community operation and then grew into the number one public charity funding Lyme disease research in the country. Now it's cool.

Bonnie Crater:
But in my journey, right, is I... Bay Area Lyme has raised over $35 million for Lyme disease and funded tons, over a hundred research projects around the country. I realized that it was simply not enough money. Healthcare and health issues, it requires billions to solve these problems. I mean, look at the investments that have been made in COVID.

Bonnie Crater:
So we needed to, as a community, leverage the power of the federal government. So that's why we decided to start Center for Lyme Action and we're very fortunate. We have excellent charter members who are the foundations and people that are very interested in creating a good diagnostic and therapy and trying to move the ball forward by getting lots of federal funding to add to the mix because we need lots of different approaches. One approach is not going to work. We need lots of different approaches. So this government approach really works. We use tried and true lobbying techniques, they work for everybody, right?

Mimi MacLean:
It's true.

Bonnie Crater:
If you use the professional approach, and it's worked for us so far, so we're going to keep at it. I personally have a commitment for the next 10 years to work on this.

Mimi MacLean:
Oh that's great. That's great. Okay, so for anybody who's listening and who wants to join, it's February 10th is the cutoff to join the fly-in. You can register right on their website which is centerforlymeaction.org.

Mimi MacLean:
And then if someone is listening to this after the cutoff, is there anything during the year they can be doing to help you?

Bonnie Crater:
Yeah. So from time to time if you go to our website and you sign up for our mailing list, you'll be added to a list of people that are interested in helping to take action. Take action means from time to time you click on an email and maybe edit a letter to your congressperson to ask for various things. The latest one we did was ARPA-H. There's an agency called DARPA. It's the Defense Advanced Research Projects Agency. This is where all the cool projects are happening in the defense department.

Mimi MacLean:
It's been in the news a quite a bit lately.

Bonnie Crater:
Yeah. Okay. So they invent a lot of things. They invented the internet. We wouldn't have the internet without DARPA. Anyway, so these types of agencies, there's also an ARPA in the energy department it turns out, I didn't know that until recently. And now the Biden administration is proposing an ARPA for the health area, so ARPA-H. So one of the things that is interesting is that it was proposed inside appropriations. So there's two steps, right, for legislation. There's authorization which says what the Congress wants the executive branch to do, and then there's appropriations, which is how they're going to fund it. So it's two steps.

Bonnie Crater:
So the current budget proposal for FY 22, that's still in play, has this ARPA-H funding and it's not a small amount of money. It's $3 billion.

Mimi MacLean:
Wow.

Bonnie Crater:
And this could be really a great innovation funding but the way it's been proposed is that it's been proposed to be part of the NIH. Now, you know, I love the NIH, God bless them, right, they're trying their hearts out, but in terms of innovation for Lyme disease they haven't really come up with some answers for us.

Mimi MacLean:
Yeah, they haven't.

Bonnie Crater:
So we're trying to give them more money so they can try to do more things but the idea around these ARPA agencies is all about innovation and we need lots of innovation in order to solve this very difficult problem, right?

Mimi MacLean:
Mm-hmm (affirmative).

Bonnie Crater:
So we thought, "Okay, well..." And it turned out my representative, Anna Eshoo, is Head of the Health Subcommittee in the House and she proposed some new legislation to have the agency report to HHS, the Secretary. Now this is very important because the direction that the agency would operate in as an independent agency, all the DARPA, all the ARPA, other ARPA agencies, report directly to the HHS Secretary and this may sound like in the weeds government work but it's really important for the future. And also important for Lyme advocates that we have the proper structures inside the government. And the reason is that on Tuesday, literally in a few days, I don't know how long this podcast lasts, when you're going to publish it, but on Tuesday, Anna Eshoo is having a hearing to try to have the discussion about whether the agencies should report into NIH or report into the HHS Secretary, so there-

Mimi MacLean:
And you want it to be HHS Secretary, you don't want it-

Bonnie Crater:
Yeah, and so does Anna Eshoo.

Mimi MacLean:
Okay, good.

Bonnie Crater:
And so does 47 other co-sponsors so we initiated an action, right, in January and 331 Lyme advocates wrote a letter to their congressperson saying, "We want this to report to HHS Secretary because we think that that's the best place to drive innovation, particularly for our particular problem called Lyme and tick-borne disease."

Bonnie Crater:
So those are the kinds of things that you can do. It doesn't take very long. It took me way longer to explain it than to actually do. It takes literally five minutes. We had 331 people do it in January. If we had 600 or a thousand... You know, these things are actually meaningful because after we did this, and I don't know if we can take full credit, but after we did this the number of co-sponsors went from 40 to 47.

Mimi MacLean:
Oh, wow. That's great.

Bonnie Crater:
Which is meaningful, right?

Mimi MacLean:
Yeah.

Bonnie Crater:
So in order for it to actually go somewhere in the House we probably need over a hundred so we're kind of halfway there. So there'll be more opportunities for more actions like that throughout the year.

Mimi MacLean:
Okay, that's good to know because I also see emails about the tick working group and stuff like that but wasn't sure if you were a part of that, but it reminded me your story was like the guy who runs the tick working group doesn't even believe in Lyme disease, out of the government. Whoever that was assigned, I was sitting in one day and I was listening to it and this guy literally doesn't believe in chronic Lyme disease. And you're like, "Wait, why is he running the tick working group?"

Bonnie Crater:
Yeah. So the Tick-Borne Disease Working Group is a really important organization because it's one of the very few places where you have a combination of federal workers and non-feds, right, [inaudible 00:16:32] who happen to have a lot of expertise in Lyme disease. Some of us are doctors or PhDs or whatever, or parents who have been studying this for 40 years, on this working group and it's a great forum to bring together.

Bonnie Crater:
There's a report that's created at the end of each two-year period. The way it was set up is three two-year periods. The first report was great and it really helped move the ball forward and that was in 2018 that it was published. We used that report to help push forward the Kay Hagan Tick Act, that's one of the things that helped get this thing going.

Bonnie Crater:
Now, the second, what happens is that there's a changing of the guard, right? You can't serve on this thing for six years, you serve on it for two years and then you're out and then you serve on it again and so on. The second group had more expertise in rickettsia than Lyme disease, in general, and so Lyme disease was a small part of that report as opposed to ticks and other tick-borne illnesses and so that report was honestly less helpful for our cause because Lyme disease is actually 80% of all the vector-borne disease cases that are [inaudible 00:17:48]. We need a big focus on Lyme disease. Anyway, so that second report, you're right, was not very helpful, but we have a new team, group three, and group three has a lot of expertise on Lyme disease.

Mimi MacLean:
Oh, good.

Bonnie Crater:
Yeah. So I am very optimistic that this third report will be fantastic. The reports come out in the even years so it was 2018, 2020, and the next one will be 2022, that's this year.

Mimi MacLean:
Right, and do they use those to help with funding and make-

Bonnie Crater:
Yeah, we use it.

Mimi MacLean:
You use it but-

Bonnie Crater:
He's here, Chris Smith, promoting his legislation and he's on the Zoom, you'll see him, he holds up this report and says, "See, you read this." And it's a big thick report and it looks great.

Mimi MacLean:
Oh good. What's his personal tie to Lyme?

Bonnie Crater:
I actually don't know. I have a suspicion but I'd rather him say.

Mimi MacLean:
Yeah, yeah, yeah, that's fine. So he'll have something probably personally.

Bonnie Crater:
I think so, yeah. He does have a personal connection.

Mimi MacLean:
Yeah, I had heard that but I wasn't sure. Okay. This has been amazing. Is there anything else that we haven't covered that you would like to cover about your organization and getting people to help you?

Bonnie Crater:
Well, as you probably surmise, we are not a protest group. If you want to like hold up signs and...

Mimi MacLean:
No, you're strategy. You're all about going and doing like...

Bonnie Crater:
Yeah. So there's a role for that but we don't do that. What we do is we use lobbying techniques to get more money for Lyme disease. And so if you want to be part of that please join us, we're really excited to have you. Just go to our website centerforlymeaction.org. Just go down to the bottom of the homepage and you'll see a popup and just sign up for the mailing list and you'll start receiving requests for actions to get involved.

Mimi MacLean:
Bonnie, thank you so much, I really appreciate it.

Mimi MacLean:
Each week, I will bring you different voices from the wellness community so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back. Thank you so much for coming on and I am so happy you are here. Subscribe now and tune in next week.

Mimi MacLean:
If you want to learn how I detox and you want to check out my Detox For Lyme Checklist, go to lyme360.com/detoxchecklist. You can also join our community at Lyme360 Warriors on Facebook and let's heal together. Thank you.