Meghan Bradshaw: Navigating Through Lyme to Lead Change
Advocate's Resilient Journey
Meghan Bradshaw shares her transformative journey from a battle with undiagnosed symptoms to becoming a beacon of hope and change in the tick-borne disease community.
In our candid conversation, Meghan reveals how a simple tick bite catapulted her into a world of chronic Lyme disease, leading to years of misdiagnosis, countless surgeries, and profound physical and emotional challenges.
Through all of that, Meghan emerges as a resilient advocate, leveraging her personal experiences to drive awareness, support clinical research, and influence policy on tick-borne illnesses. With her academic pursuits in public health and her active participation in federal working groups and non-profits, Meghan exemplifies the power of patient advocacy in transforming personal suffering into societal gain.
Her journey offers not just insight into the complexities of tick-borne diseases but also inspiration for anyone facing health challenges, underscoring the importance of advocacy, perseverance, and hope.
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Transcript of the Interview
Mary: Hi, this is Mary with Insect Shield, and I'm really excited today to have Megan Bradshaw join me. Welcome, Megan.
Meghan: Thanks so much for having me, Mary. I'm very excited to be here.
Mary: Great. I'll just, brief introduction. You are a graduate student at the University of North Carolina. You are working on your practicum with Columbia and supporting the clinical trials, which obviously we'll talk about further.
You are very involved in the tick and Lyme tick and Oh my gosh, excuse me. The Lyme and Tick Borne Disease community, you yourself suffer from long term Lyme disease. And I'm talking about you. You tell us about, give us an introduction and tell us your story because it's really inspirational and fascinating.
Meghan: Thank you. Sure. My name is Megan Bradshaw. I am in Charlotte, North Carolina. And I guess my story in a nutshell is that a tick bite has turned me into a bionic woman. For years I had been experiencing seemingly random symptoms None of which at that point were really debilitating, but they were concerning enough that I was trying to get, an understanding of what was going on and I was passed off to a number of different specialists, and everyone just had their hands up of something's going on, but we can't really.
Determine what it is. A lot of tests were inconclusive. And so this went on for a few years and I was I was chasing a diagnosis. And in my early twenties, I finally received a diagnosis that I had rheumatoid arthritis. And at this point, I had been incapacitated. I was in so much pain I had very limited mobility.
My mom was having to come and help take care of me when I was living in Tennessee. And I, I was having a hard time just doing basic everyday functions. And so I finally was diagnosed with RA. This is the first time somebody had some sort of a solution for me. I went along and I followed the recommended treatment, which was steroids and low doses of chemo drugs, which I was giving myself a weekly injection of and I did this for about two and a half years and lo and behold I wasn't really getting better.
Things were still persistent. And I just had this doubt in the back of my mind that this was really what I was dealing with. And so I went to another doctor who was trying to look at this from every angle and, trying to understand, really understand me and the context of my life which I think is something that's super important to consider is that the places that we live and that we travel to and the things that we do for fun the way that we interact with the environment around us with plants and animals we all share an environment and that can obviously influence our health. And for me, I had lived in tick hotspots for all my life. And this this doctor I finally was working with was putting those pieces together realizing.
Oh my goodness You lived in New Jersey and North Carolina and you spent a lot of time outdoors and you've had pets your whole life And they asked if I had ever been tested for tick borne diseases and I said no and of course testing came back and I finally had an answer and I learned it was I was 26.
It was the day after I had bilateral hip replacement surgery finally understanding what had been wreaking havoc on my body for the years leading up to it which
Mary: so literally, it went to the point where you had to have hip replaced, your hips, both hips, at 26 years
Meghan: hips at 26 years old. Yes. And so I, I had the surgery and the next day I got the email with my test results and I finally understood. And things made sense for the first time. Because I had these symptoms that didn't seem related, such as, I was getting ringing in my ears and dizzy spells and I was fainting and I was having tachycardia episodes and I was having joint pain and I wouldn't understand how these things were connected.
But now understanding, the mechanisms of tick borne infections it's very clear. It it, it checks all the boxes. And it was relief and it was frustrational at once. And so I immediately started with treatment, I did 10 months of IV antibiotics, I had a central line put in my chest, and from then on, I, I had a number of other surgeries and it was like a domino effect, as soon as I fixed one thing, the next thing needed to be addressed as well, so I've had hips, shoulders, knees ankles elbow, and both hands have been reconstructed, and Pretty much like every major joint that can be replaced has been replaced at this point and I'm very fortunate it has not yet affected my spine.
But everything else has been has been changed and I'm now made of metal.
Mary: Wow. The, so really just, your joints, it just, it basically destroyed your, all your joints.
Meghan: it destroyed my joints. And in my situation, it was like I had the perfect storm. So I had active infections I was on immunosuppressive drugs, which
Mary: Ah, because of the arthritis medicine?
Meghan: Yes. And it created a perfect storm. I also, unbeknownst to me at the time, I have a connective tissue disorder called Ehlers Danlos syndrome.
I was hypermobile my whole life. I was double jointed. I thought it was cool that I was super flexible but obviously that, that ended up being part of the problem later on, but as I started getting into treatment and having these surgeries, I obviously had a lot of time on my hands and I.
Was trying to figure out how the heck did this happen? How is it that I had really great access to health care and I was able to travel and go to really, Outstanding medical institutions and see some of the best specialists and I still wound up in this really bad position And I started to realize that this was a problem.
That was much larger than my own I realized that I had slipped through the cracks like so many other patients do because there are gaps in medical education and general public awareness about tick borne diseases, I had never known to check myself, how to protect myself. And so it was a personal behavior issue as well as, there's gaps in the clinical education and the diagnostic tools.
And so I I started to realize that this was an opportunity for me, maybe to use my personal story to find a way to help to. To change some of these things because this is what happened to me. Someone who's had outstanding access to health care. What's happening to folks who may be underinsured, who can't, make it to the emergency room when they truly have a medical emergency because they may not have the financial means to get the care that they need.
What happens to folks who are living in provider shortage areas? There's so many areas of our country, rural and they're further away From hospitals and clinics. There are some counties without even a primary care provider in our country or hospitals. And, so there's a lot of people who I feel like are probably also slipping through the crack who may be, suffering from tick borne diseases, and so I I pivoted and they decided I want to go back to school. And so I decided to pursue public health. And this came because I really wanted to help create programs and help to create policy that could have prevented my situation because hindsight, of course, is 2020 and I think about elements that could and should exist and such as prevention programs and public health campaigns to raise awareness about tick borne diseases and overcome some of those misconceptions that many folks hold and false mental models.
About where they are and what they look like things that, I could help to put into place so that other people wouldn't wind up in the position that I have found myself in. I've been in this program for 2 years now, and along the way, I've also had some really cool opportunities been an advocate with the Center for Lyme Action and now I'm working on their team, which has been such a fun experience.
And also working with a few different tick borne disease non profits with Lyme TV, with Tick Borne Conditions United. I had the opportunity to attend the Bay Area Lyme Foundation's event in the spring and got to speak and share my story. I've been a living donor for the Lyme Disease Biobank and I encourage other patients.
Who may be having surgeries to donate their body parts that are being removed because of this disease to help researchers to better understand the mechanisms of it. And it's been really great to connect with other patients who unfortunately are going through this too, but we can commiserate together about our knee replacements and find a way to use.
Something that is not a great situation to maybe help change it for other people. So I've been really grateful for the experiences that I've had. Also, with advocacy being on a, the federal working group I was on the subcommittee for clinical presentation and pathogenesis did that right at the beginning as I was starting school, which was cool to be able to put things that I was learning in the classroom into practice,
Mary: So this was with the federal government subcommittees?
Meghan: Yes, yeah, the yeah, the U. S. Department of Health and Human Services had Tick Borne Disease Working Group, unfortunately at sunset because it was not reauthorized but it existed for three years, and I was on the final iteration as a subcommittee member, and then in the last year, I actually was asked to be a peer review panelist for Department of Defense Health Programs for Tick Borne Disease Research Programs.
So I've had a very atypical path, because it was really my experience as a patient that brought me into all of these things. But it's been really neat to apply my lived experience and that perspective and the ties that I've made with the patient community, coupling it with My educational training I had an outstanding experience at the Gillings School at UNC and it's been really neat to use some of those tools to help my own patient community.
Mary: Yeah, it's your story. It's, yeah, it's shocking to me, to many it's in your in the kind of tick borne disease community, unfortunately not that shocking to many in, in that group.
I think the more people understand like really what can happen, if we, if you could have been diagnosed, really all these ifs, like you said, you have you looking back, but if some of these things you wouldn't have to go through, but then for now you to take that.
Experience. It was not your life's path to go. I'm going to go like help, go public health or even in that community. But obviously you're a wonderful spokesperson. You're so eloquent. You can speak to all of these different kind of groups within the community and hopefully bridge everyone together.
I think the government part has to be, I'd love to touch on that because I don't know if people realize this whole other community of advocacy of okay, this all. Like anything in healthcare, a lot of it starts from the government has to like make
these mandates and fund, studies and all of that.
What are the goal what are, like, right now the goals of the community of the tick borne disease community really want if the government could do, obviously there's huge goals, but really, what are the things that right now you're working on to have the government make some changes to hopefully.
People won't go through what you've gone through.
Meghan: sure. I think, it's important to know like patient perspective and what I hear from other patients in the community. I know that there are serious gaps in the clinical education. There are gaps in public awareness. There are challenges with the diagnostic tools. Access to care is a problem.
Many patients are unable to get the care that they need to improve their condition. Many of it's not covered by insurance. Also, there are many limitations. And unfortunately mainstream medicine has not gotten up to speed to understand and we don't have a great understanding of what are the mechanisms of tick borne illnesses, right?
And what what can we do to prevent the patients who are having the persistent issues or how can we address their issues? So from the federal government standpoint I know from patient standpoint, it can seem very frustrating that maybe things are not changing things are not accessible, that they're, and this frustration is very warranted.
I know I can attest to my own experience. Like I saw just a how challenging it is to navigate the care process. But what's happening at the federal level is there's a few different initiatives. And as a public health professional, what I can say is that the right things are being put into place.
to get patients the outcomes they desire. But unfortunately, these things do take time for us to see really the full benefit. But there are a few different initiatives that I think are really important. So I think first want to touch on the vector borne disease national strategy that has been put together Dr.
Kristen Honey from HHS and Dr. Sue Visser from the CDC have been working on this and it's, A really incredible outline of how can we address these issues from many different angles. So looking at provider education, looking at medically underserved populations and making sure that they have the resources they need in educating our communities.
Really looking at vulnerable populations too, like children indigenous folks, people who are underinsured the rural poor. So really paying attention to folks who. Are going to be more vulnerable, and I think that this strategy. Is a really great framework and seeing these things actually put into play and into action are going to be what brings.
Really significant change to communities. The other thing that was the factor boring. Sorry, the Tick Borne Disease Working Group with HHS, which has concluded their work. However, there was a long list of recommendations that the working group put together for Congress to act upon to fund certain initiatives.
So a few things that I can I can speak to from my own subcommittee that I was really excited about was the potential for funding perspective cohort studies that would look at the long term implications of tick borne diseases, Lyme disease, I think, in particular related to pregnancy and fetal outcomes I think this would be Huge.
It is so necessary. This is a huge knowledge gap that we need to fill. We know that there are many families who have suffered tremendously because of how tick borne diseases have impacted a mother who may have passed it on to their children. And then you have a whole family who is suffering from this.
And obviously we need to have a better understanding of how do we prevent this? How do we detect this and how do we respond to this too?
Mary: Yeah, I, just, but I didn't even know, I didn't, and I'm, obviously I work we do a lot with tick borne disease, and we talk to a lot of people. It was just like last year, actually, I think, when I met you at the with the Center for Lyme Action, doing the Lyme Flying, that I even knew you could pass, that Lyme disease could be passed.
I don't think, I think that is a fact that, I probably, okay, I know more than probably the average person, and I
had no clue that literally a mother can pass Lyme disease to her child.
Meghan: And I have heard, countless stories from families and it's gut wrenching. It's heartbreaking. And, you wonder how much needless suffering has happened that we really need to put an end to because this is something that should be easy to detect and respond to.
Mary: So if, is, are they working on perhaps, so if they know a mother has Lyme, and if the baby, when the baby's born, they could immediately do
some, kind of treatment type of
Meghan: Yeah. And yeah, I think it's right now. The suggestion for the study was to really just understand the mechanism of, if this is being passed, how is it which infections can be passed and transmitted? And then what does that look like for the child's development? How can a mother who's had Lyme or may have an active infection?
What can that do for? But what can that cause in the child's development? And so there is one study actually right now that they're, I believe they're still recruiting for, and this is out of Children's National Hospital. And so if you are a mother who has Lyme disease or you are, planning to have a family and you may have a history I would certainly look into connecting with them to see if you may be a candidate to participate in this study because I think this is a really important population that we really need to pay attention to.
Mary: Man, when you think, too, about that, like, how many People, they don't, they never know. They're still there. I wonder how, if you could do this study, even going in, like, how many countless of, the child who's always sick, you always see, but it's like, how many there's got to be some significant numbers of people that don't even know and also because there may also be the mother was never even diagnosed and is just, oh,
Meghan: Unaware that they may
Mary: and maybe, yeah,
and just
Meghan: which is,
Mary: up and down
Meghan: Yeah. So hopefully we'll continue to see some findings from that could be implemented to prevent these adverse outcomes because, this is I think a really important element is understanding the transmission that it may not just be from a tick bite, it, this is something that families may need to pay attention to if there's a history.
So that was one example. Another example of something that I think that would be incredible if it was funded was a study that looks at subgroups of our population that have a high burden of multisystemic chronic conditions. So thinking
Mary: explain that down a little bit, just before we land.
Meghan: in layman's terms. Let's say we know that a certain population or demographic group may have a high burden of arthritis and heart conditions, and they may have psychiatric conditions.
So different types of chronic conditions have they been properly evaluated? Have they been evaluated for tick borne illnesses, right? You think about subgroups, especially those that may have Inadequate access to health care. Think about folks who may be incarcerated. Think about folks who are experiencing homelessness.
Think about individuals who are like living on reservations or the world poor in the United States who don't have great access to health care. I think that Kind of study would do a great job on shedding light on a large part of the issue because I think another Challenge that we have is that we don't see the full scope of the problem right now I think we're just seeing the tip of the iceberg because we know that there are gaps in reporting and Something that I always like to highlight and I talk about this a lot in school because obviously and when I have the option to select my topic I choose Lyme and tick borne diseases, because I really want to learn all the different ways in which we can address this and get, feedback from my professors and my peers who have experience in public health because, this is an area that we are in dire need of, of intervention. And so one of the things that I always talk about is the challenge with reporting. We look at CDC reporting and not to get the, I'm not going to get the numbers exactly right, but we have about 40, 000 cases that have been reported in a single year of Lyme disease and just Lyme disease of white patients.
And then when you look at all other races, Combined, it's like less than six or seven thousand cases. So there's a huge disparity here, and it's not that tics are only fighting white people. We know that there are barriers and access to care. Health equity is a huge problem in our country.
Unfortunately, we know that racism and bias plays a role in healthcare, and it can lead to really bad outcomes. And I think that this is an area where, I've talked to patients who have been told that their providers have completely dismissed them when they've had a known tick bite that they've been completely dismissed because of their skin tone because they don't see the bullseye rash, for example, but we know that doesn't look the same on melanated skin.
It looks more the clinical presentation may look more like a bruise on a darker skin tone. And so I think that, funding a study that is really looking at groups that we know have chronic conditions that may never have been tested for tick borne diseases I think may open up a whole New world, essentially, of understanding how many people are impacted by this because, there's a lot of groups with inadequate access to care who they don't have the ability and the resources, maybe to continue to go knocking down doors, chasing a diagnosis.
And so I think that there's. There's a huge opportunity to explore that the research that does exist that looks at health disparities with tick borne diseases it's very apparent. We know that for example, like Rocky Mountain spotted fever, it's like a fourfold fatality for Native Americans versus white patients.
So we know that, these things can disproportionately impact marginalized communities. But we don't have the full, I don't think we have the full picture quite yet. And I think that there's, there ought to be more investigation looking at some of these groups that have reduced access to care.
Yeah.
Mary: not so good, it could easily end up like in your case where it's okay. They missed. They just make some other diagnosis and give the medicine and then it could end up actually making it worse. Just like with yours. I'm going to know we've talked a lot and know you also working with the alpha gal community.
That's so many people misdiagnosed. Where they get pills that turns out whatever pill they're getting has gelatin in the pill, which is,
Meghan: And it can
Mary: makes it even worse.
Meghan: yeah, that's, yeah. So there's a lot of gaps in the clinical education aspect that I hope. There will be more initiatives in the future. We're seeing some of these things put into place, but just awareness campaigns. I think provider education is really essential. There was a study that came out this summer.
The CDC published a finding that, they looked at 1, 500 healthcare providers, most of which had no idea what Alpha Gal was. And then you look at if they're comfortable diagnosing or managing a condition and it's even fewer. And that's a concerning statistic because you have folks who may have a life threatening allergy and they may wind up in a worse situation if the folks who are caring for them are unaware of alpha gal and do not know how to ensure that they're not giving that patient any pharmaceutical product that has a mammal derivative in it that could make their condition worse.
For example, basic, a lot of basic things that, most folks who don't have alpha gal are thinking of but like heparin, for example, you have a line for an IV, heparin is used to prevent clotting and It's very commonly used in medicine, and it has I believe it's a pork derivative in it.
Yeah so very concerning, I think, for,
Mary: And you would need, yeah, so even as a patient, you would also have to have the information to know that, to say to, and you
went in to they, you're in the emerge something else and it's oh, by the way, I have, you can't give me that. To be having to juggle all that. But in, in a time where maybe you're in some sort of medical emergency is scary. Really
Meghan: is. I was just having a conversation with one of my colleagues today who has alpha gal and they are preparing for an upcoming surgery and they are hoping to have somebody they want somebody to shadow to see what this is like for an alpha gal patient, the experience of being at the hospital and the protocols that have to be put into place to ensure that she is not going to be administered any any Ingredients or pharmaceuticals, anything that contains alpha gal.
And I think that would be super interesting. And I hope that they're able to make that happen because I think that would shed light on just how challenging it is for. Patients
Mary: And I don't think
Meghan: to navigate
Mary: there's animal products in, I think, within, it's because some people know more just like gelatin, like it can be used in like capsules and things, but that it's
used in just a day, when every day kind of IV
Meghan: And so paper products like paper towels or tissue things that you really wouldn't think may be may be problematic for an allergy, but it turns out it's hidden in a lot of things. Yeah, but Yeah, so I think, I guess back to the original question is there's a lot of other things that are being put into place.
For example, there's advocacy right now, there Tick Borne Conditions United is working on an Alpha Gal initiative to try to have Alpha Gal as a reportable condition in states because the only state right now that's reporting it is Arkansas. And there's There's a, unfortunately, a high incidence of alpha gal in the Ozarks.
So that would make sense that Arkansas is starting to track that. But there's initiatives right now in Virginia and also main, main, it seems that they're not moving towards having a reportable condition, but they're open to having conversations about it's moving to a work group in the coming weeks, which I'm hopeful that some productive conversation will come out of that of, if it's not a reportable condition, there's still a lot of things that can be implemented that are.
Cost effective and going to have a high impact because it's important that we get this information out into the communities of what this condition is and how providers can help to manage it.
Mary: Yeah. And I also, I know I don't know, will you, I feel like the media and there, there's just a lot more talk about
ticks and tick-borne disease. I know even just the past few weeks there was Rocky Mountain Spot of Fever. There's been a big outbreak and leads. It's coming up. Granted, I'm looking for that news probably like you are.
So I'm seeing it, but it looks like it's on more mainstream, there's, the
local news is.
are reporting it so that. It seems like there's so much to do, but then have to take a break, go, what, look at how much has happened.
Meghan: yeah, I think in the last few years, we've gotten a lot of publicity, which I think is really helpful. I don't think a week goes by that I'm not receiving an article being sent from like a family member or a friend that they've come across that talks about a tick borne disease or condition and I think it's great because people who aren't personally impacted by this are getting a better understanding of what it is and are aware of it.
See it in the conversations that I have, like with my peers in school and in the community too. People are paying attention to these things. The media that's covering tick borne diseases, which I think is so important because, for example, I had very little knowledge of tick borne diseases before I was bitten.
And I didn't know, unfortunately, until it was way too late. And now I know more than more than I ever thought I would.
Mary: Yeah. Do you remember being bit by a tick at some point? Yeah. So many people don't and it's not.
Meghan: many people don't. Which is very common. Ticks have this, it's like an anesthetic like agent in their saliva. So you don't feel it the same way that you're going to feel like a bee sting or a mosquito bite. They're stealthy. And I think about the way in which I've lived my life, which I think, again, thinking about the context in which patients live is so important for for providers, and also just for individuals to be aware of because of all the things that we may be exposed to in our living environments and what we do for recreational activities.
So I think about. As a child, I played a lot in the woods and I played a lot in the woods and shorts and a t shirt and in flip flops and I was always barefoot in the grass and I went to summer camp. I went to sleep away camp and, I was even in the woods and I never knew to check myself and I.
And I think about how, and this is silly, but some of the other things that I was made aware of when I went to summer camp as a child but never, tics weren't part of that conversation. And which I think is shocking in hindsight. And so I think there's lots of opportunities. It's important to educate.
Folks who are enjoying recreational activities, or if it's an occupational hazard, people need to be aware that this is something that, they may be exposing themselves to tick habitats and how they can protect themselves.
Mary: I think just people knowing they might not see a tick ever and that because it's, might get on there and it could, and then it falls off eventually once it's it's done its whole meal and that, that's not that, that's common. So if maybe if someone's not, if you're not, something's feeling funky and even if you don't see the tick you can still go at the doctor say, hey, I'm outside a lot.
Maybe we should check for some tick borne, perhaps that is so just that Speaking that up and bringing it up to a doctor because a lot of doctors probably are wouldn't even think of it If there's
no
Meghan: not coming to the front of mind. I think some people are really lucky, especially if you're in an endemic area. I have friends who live in New York, New Jersey, Connecticut, and their providers are very aware. And that's something that they really. They have at the front of their mind.
Whereas I live in North Carolina. This is something that is not typically thought about, when I have conversations with providers, for example, like my primary care provider, he's fantastic from Pennsylvania. So he has some context because he grew up in an endemic area. But most other.
Providers that I've spoken to are like, Oh, I didn't realize that was a, an issue here. I thought that was just in the northeast. And again I think it's important to make sure that we're educating people to move away from those outdated mental models and misconceptions because we know that tick ranges Spreading and we're finding different species in places where they may not have historically called home.
And so people just need to be aware and also be aware that it's not just deep in the woods, if you have small mammals that are on your property, such as mice. They could be hitchhiking onto them, and so they, may have ticks right in your backyard just being very aware and being diligent with checking yourself and, using preventative tools and gear and just keeping that in mind so that you can stay safe.
You shouldn't be deterred from going outside and enjoying life but prevention and just being aware is very important.
Mary: Yeah, that's what's great I really love hearing just what you're doing And I think just the whole scope of how much is being worked on behind the scenes with all these different groups is really exciting and I Can't imagine that just not, more and more things are going to be coming
Meghan: there are more things coming,
Mary: Is, now, so for, is there something people just is there something just any people can do to help with this? Tell us
Meghan: to talk about this. So the Center for Lyme Action is a 501c4 so we're an organization that is dedicated to increasing federal funding for Lyme and tick borne diseases. The organization is only a few years old and in our short lifespan we have in about three years tripled federal funding for Lyme and tick borne diseases, which is incredible.
This is really great momentum and it's very encouraging and it's also it's just, Shocking because this is at a time where we're seeing cuts across the board for other health programs. So we're going against the grain and we're hoping to continue this momentum and this is, our success as an organization is because of our advocates.
And so everyday folks, family members who are impacted by this patients, this is something that everyone can participate in. You don't have to have experience with lobbying. You don't have to have experience with, working with your representatives. We just want you to come and show up and tell your story if you want to and help our representatives and their staffers understand how this directly impacts their constituents.
So that they can hopefully continue to support our requests for additional funding in these areas. And just to give some examples of things that we requested funding for we have been working to fund the Cahagin Tick Act. The Cahagin Tick Act was signed into law in December 2019.
This is actually its last year of authorization. And what this does is it gives the CDC funding for control and prevention. So some money goes towards research grants, which is So important so we can continue to close these knowledge gaps. And then some of this funding also goes to states and tribes that are high risk for tick borne diseases to help them with prevention and response.
Another thing that we're funding is the Limex Innovation Accelerator. So this is the largest public private partnership between HHS and the Stephen and Alexander Cohen Foundation. This was a 25 million project. To give basically prizes for folks who are submitting ideas for diagnostic tools and so it's a competition and we, I think just this past year had the first round of awards given which is great, so there's some really promising technology that's coming down the pipeline, and we're hoping to continue to see this project go forward so that
Mary: That's, yeah, that seems huge because the, I
Meghan: which is huge.
Mary: that's the thing, if that, what I've learned from other folks, that's, if you can't diagnose, then you can't treat. And to have these situations where the diagnosis is iffy or it's unclear so that seems, if there can be a somewhat easy, we think of like the, the COVID test come up, it's okay, boom, you can figure it out if you have COVID.
It shouldn't be, I don't know. I'm not a scientist, but it shouldn't be that hard. It's like they can do that, those types of things to figure out if you've got one of these diseases.
Meghan: yeah, point blank is we should be able to easily detect these diseases. Especially being that this is such a large issue. We know that about half a million Americans are contracting Lyme disease every year. This is twice as common as the most common cancer in the United States.
We've got to do a better job.
Mary: That's an interesting number. I did not realize that. So it's twice, so what's the most
Meghan: So it's important to note that currently are reporting is passive. And so some states don't report when they have a case. So we're only seeing a fraction, but there was a data analysis that the CDC did where they looked at insurance records that got to that number, which is closer to about half a million patients every year who they believe are impacted by Lyme disease just specifically.
But yeah. And then you look at breast cancer. I believe it's still the most common cancer in the United States. And this is, going off of the number that we suspect it's about twice as common.
Mary: Okay, that's, but that's a good, that really puts things in perspective. Because I think people don't, they don't know people don't know 500, 000, oh, 100 and
Meghan: People are like, this is very rare.
Mary: realizing, thinking,
Meghan: No, this is a big problem
Mary: Because, yeah, so it's, yeah, okay. But there's. That, that number really does help put some stuff in perspective, so very interesting.
Yeah
Meghan: another thing that we asked for funding for is for research with the National Institute of Allergy and Infectious Disease. This is under the National Institute of Health. And so right now on average, I think it's about 106. is allocated like per patient is allocated towards Lyme funding which is low.
Considering we have other infectious diseases that are far less common, such as West Nile and malaria where you're seeing around two to 3000 cases a year. And malaria is getting upwards of 150, 000 of funding per patient. Yeah, so it doesn't really match up. So we're trying to increase that so that we have more funding allocated
Mary: for for for diseases that are being, hitting a huge swath of the population.
Meghan: so it's impacting a whole lot of people in our country. And that's another thing that we advocate for. And then we're also advocating for just prevention programs at the CDC. This can help with public awareness efforts. This can help to develop safer and more effective tick repellents.
It can help with surveillance and also help. For specifically looking at patients who have persistent or chronic Lyme disease and then the last thing that we always work towards is the peer review tick borne disease research panel with the Department of Defense, which I'm a peer reviewer.
I served on this past year and, this is an incredible program because what it does is it gathers both experts on tick borne diseases and then patients and their families and folks who have that lived experience and we're able to look at different proposals It's grant proposals. So we're looking at things that folks want to provide funding for from the DOD for research programs that are specifically related to tick borne diseases and we get to really assess and see what might be the most impactful for the community and see where those funds can be allocated.
So I can't speak to any of the The proposals yet because they're, it's still under wraps. But what I can say is it's very encouraging to see that these things are hopefully coming down the pipeline for patients and hopefully people who will not become patients as well, because preventing this is also just as important.
But, yeah, so that's some of the things that the Center for Lyme Action works towards and again it's patients and their families and community members who can speak to just, the magnitude of this problem, who can talk about the social, emotional, financial, physiological devastation that these diseases can cause, and you helping to get Congress and their staff to understand that this really is impacting their constituents.
And this should be a priority issue. We are very grateful for the members of Congress who continue to support our initiatives. We have some offices who really are just great allies for us. And we sincerely appreciate that. We also have a lime caucus. So this is a group that basically is in the House of Representatives.
And it's a group of these representatives who formed this caucus, which is Basically, like a special interest group, and they want to focus on tick borne disease initiatives. And I would say, I think we have close to two dozen members right now, which is really great. Yeah, and so we're hoping to continue to grow that too because, and so we're hoping if Patients or folks in the community who want to help when support if they have connections with the representatives.
We definitely want to encourage them to join the caucus. So we can. Really expedite some of these initiatives.
Mary: Yeah. So I guess with, Yeah,
no, that's with our functional Congress, I'm sure it'll go well.
Meghan: yes, so yeah,
Mary: but no, yeah but it's great because with all of that, you have a, there's a lot of support. So that shows that there. Are some people focusing on this because if we're able to increase funding and get this done With
all the like you said all the everything else going down That's it's being paid attention to all
Meghan: so we have some people who are really in our corner but we need to continue this momentum. So the Center for Lime Action has our virtual advocacy day. So we keep it virtual so that we can have more folks participating, which is great. So if you are stuck on your couch.
Hooked up to an ivy like I was the first year that I was doing this, you can participate. It's just hop onto zoom we schedule for each advocate, a minimum of three about 30 minute meetings and so this is a great way for folks to get involved you can register on our website center for lime action.
org
Mary: We'll put a link and we'll put a link at the
Meghan: Awesome. Awesome. And we have a training session because we want to make sure that folks feel really confident going into their meetings. I know my first year I was. A little intimidated. I didn't know what to expect, but you and I have been in meetings together and we've seen that it's really great to have this dialogue with our representatives offices.
A lot of them are very receptive and they understand just what a problem this is. And it's nice that they will. They will help advocate for us too. And so hopefully we continue that momentum this year.
Mary: absolutely thank you so much for your time. It's Learned a lot and kind of your story is it is like I said in the beginning, it's inspirational and you're just the way you speak about all of these things. I have no doubt you're going to be a force to reckon with in this community for good and make you're going to make
significant changes. So it's really
Meghan: I appreciate you saying that. Thank you.
Mary: And we'll reconnect in a couple years when you're like, The leading the cause and I mean I can only imagine how much everything will change, just if you What's happened in the past couple years?
Is it exponentially going to be growing and
Meghan: yeah, I, it's been an interesting journey, I'm very grateful that I'm coming out the other side of it. I didn't know what my life was going to look like because I was, I was essentially bedridden. I was using a wheelchair and I needed 24 hour care for about three years.
And the fact that I have independence and mobility and I have the capacity to go to school and engage in all these different activities. Cheers. It's just really great. And I, I feel very fortunate that I can do this. And so I'm committed that I can, and it helps my healing to, move forward with my life and tell my story and tell other patients stories too, because that's so important and highlighting that there's so many of us, mine is unique and it has shock value, but there are a lot of common themes that I've experienced that I know that so many other folks have lived to.
And And so I'm just very grateful that I can continue to help advocate and move things along for us.
Mary: okay thank you so much for sharing your story with us and we look forward to talking with you again in the future And hearing what you're up
Meghan: Thank you. Sounds great. Thanks, Mary.
Mary: Thanks.