Whether it’s hiding the likes of Pamela Anderson from paparazzi or helping NeNe Leakes pretend to sell furniture…Alex Moresco has a story about it. A PR executive from Chicago, four years ago her life was turned upside-down by undiagnosed illness. It took her two years and eight specialists (a shorter time than most, she admits) to find a doctor that would eventually crack the case: tick-borne illness. She quickly realized what mattered in life: philanthropy, advocacy, and lobbying for more accessible and evidence-based healthcare. Moresco has gone on to raise hundreds of thousands of dollars for tick-borne illness research, and makes frequent trips to DC as part of that work. In 2020, she co-founded Advocacy Express, an automated advocacy platform that makes it attainable and efficient for constituents to lobby their Representatives for tick-borne disease-related and healthcare change. Featured on People, Fox, Michigan Avenue Magazine, Swaay, and various other outlets, she joined us to share her story and remind why advocacy matters. Especially for those living through Lyme.
Tune in as Ali shares:
- how her symptoms were written off by practitioners: as a cold, flu, stomach flu, food poisoning, ear infections, depression, and more
- that while she was being brushed aside by practitioners, her symptoms progressed so much that she became bedridden
- a recognition of her privilege in accessing varied treatments — Eastern, Western, antibiotics, ozone, IV therapy, peptide therapy, IVIG, and more
- that she has multiple confections, dysautonomia, and Specific Antibody Deficiency as a result of her Lyme infection
- that one of her doctors had the wherewithal to send her to an LLMD for confirmation and treatment
- that so many Lyme patients are abandoned by friends, family, and practitioners
- how her illness has impacted her relationships
- the importance of mental health support through chronic illness — and that she finally sought professional support after losing a close friend to Lyme
- the disproportionate disbelief of chronic Lyme patients, and the need for systemic change in order to validate their experiences and create practical solutions
- why she is committed to helping raise voices in more marginalized communities
- why it’s more critical to DO THE WORK of erasing stigma and addressing systemic oppression behind the scenes, rather than solely taking part in performative action
- what drove she and her husband to establish Advocacy Express — and how they are leveraging the platform to create legislative change in healthcare
- what we need to change about medical education in the US — and why more doctors need to be educated in chronic disease (outside of what’s easily treated with pharmaceuticals)
- why it’s a crime that insurance companies require patients to be “sicker” in order to address their needs — and thus create long-term dependence on treatments, rather than covering preventive treatments in the short-term
- that there is hope
Lauren: All right, guys. Thank you so much for joining us. I am here today with Ali Moresco. Ali lives with Lyme disease, and has become an advocate for diagnostics and improving patient outcomes for those living with Lyme. She's on the show today to talk to us all about it. Ali, thank you so much for joining us.
Ali: Thank you so much for having me. I feel like I'm having a total fangirl moment talking to you. It truly is an honor.
Lauren: Well, the feeling's mutual! (laughs) Wow, thank you so much. That’s so sweet of you. I'm truly having the same moment myself. I love it when things like that happen. It's really Kismet that we ended up on the show together.
Ali: It is. Nothing happens by accident.
Lauren: Exactly. Well, that's something you've certainly learned through your health journey. So let's get straight into it. I'd love for you to talk to us about when and how you first realized that you had something going on with your health, and how you've found ways to take control of your health since then.
Ali: Oh, boy, you know, it has been one giant learning process. And I'm sure as you know first-hand, that it never stops. So I feel like every day I'm working to get control over it. You know, I think like so many others living with Lyme disease and tick-borne illness, I had never really heard of it before.
I live in Chicago. I'm a city girl. I am not a woodsy ‘yeah, let's go for a hike, or roll in the grass!’ It's not who I am at all.
I was dating my now husband at the time, and his family goes up to northern Michigan every year. So I went with them about a year into us dating, and came home, and within a week came down with flu-like symptoms, and this weird spotted leopard rash that I still have five years later to this day, all over my body. Nobody could figure out what was wrong with me. It ultimately took two years of testing, retesting, diagnosis after diagnosis that was incorrect. Until eventually a doctor looked at me and was, like, “I think you have Lyme disease.” And I was, like, “Oh.” And sure enough, that's what it was. And five years later, thank God, knock wood, I am still here. Like I said, just trying to work through it every day. It’s a journey.
Lauren: It absolutely is. And a lot of what you advocate for, certainly through your social media, as you've grown into really this advocate for fellow Lymies and other individuals living with chronic disease, is about the fact that healing is an ongoing process. I know that Lyme is known as the Great Imitator. So can you talk to us about these flu-like symptoms, this rash that you came down with, and what treatments you've pursued as well as you've gone into this healing journey?
Ali: So, my first symptoms, it was like having a cold, and I went to my doctor, and they said, “Oh, you just have a summer cold,” and I said, “Okay.” And then, a couple of weeks later, I had full flu-like symptoms, went back to the doctor. “It's a summer flu, it'll pass.” Okay. And I think over the course of the rest of that summer, into the fall, I was at my GP at a well-respected Chicago-based hospital every week, every two weeks. And every week or every two weeks, it was the same thing. It was … you have stomach flu, food poisoning, you have a summer cold, you have the flu, you have a sinus infection, you have an ear infection … Literally, it was never-ending. And then I just got worse and worse and worse and it morphed into extreme joint pain, extreme nausea; I couldn't get up and down the stairs by myself, couldn't get out of bed by myself. Just things that you and I don't and no longer do, but most people just take for granted every day. And then when you start to lose those capabilities, you’re, like, oh, my God, what is going on? And eventually … it's actually interesting that my mom through this whole thing was really the person that went through this with me, and she eventually asked my GP if I could get tested for Lyme disease. Because my mom grew up on the East Coast, where actually I was born.
She was very aware, and I will never forget this … my doctor looking at my mother and saying, “Anyone who ever tests her for Lyme disease is a charlatan.”
And I was like, what? My mom was, like, “Okay, well, listen to the doctor.” Because who doesn't think that way — until something doesn't go the way you're hoping it will. And then two years later, I have a doctor look at me and be, like, “I think you have Lyme disease.” Within the same hospital system, which was kind of wild. And in the midst of that … I feel like we could do a whole other episode on this … not that anyone would want to listen to me talk about this, but about treatments.
Lauren: Oh, I would!
Ali: Because I've been lucky enough to, literally, do it all, try it all. And it's like a blessing and a curse. Because on one hand, I am one of those people where the initial treatments really didn't help me. So I just kept getting sicker, and had to try all these other things. But I also know that it's really not normal to have access to so many vast and diverse treatments, and to be able to try them all — which is what we're fighting to change. But I have done Eastern, Western; I did the antibiotics, I did IV antibiotics, still I do ozone, I do IV therapy, I do peptide therapy — actually with Dr. Casey Kelley. And on top of that I have multiple co-infections. I have dysautonomia, which means I eat a lot of salty food, which is good and bad, depending on what you're in the mood for. And I also have specific antibody deficiency. So I do IVIG every week, which is my main thing right now.
Lauren: This is a huge load from a treatment perspective, let alone from a diagnosis perspective. And as you're failing at various treatments in order to get to the next — as our system dictates, right, that you fail first — you're getting sicker and sicker. I wonder as well with the Lyme testing, because there's so much controversy about Lyme testing itself as well … did your Lyme disease diagnosis show up in the traditional Western blot test? Or did you have to get the IGeneX test and get an LLMD, or a Lyme Literate Medical Doctor, to look at your test results in order to get your diagnosis as well?
Ali: Thankfully, when the doctor, the GP, tested me for Lyme originally, he knew enough to be dangerous, but not enough to continue to treat me. So he tested me and I tested inconclusive on standardized CDC testing.
But thank God, he knew enough to say, "I know testing isn’t accurate. And now I'm going to send you to someone who can test you accurately."
And that's how I ended up at my first doctor in Wisconsin, who I still work with for certain therapies. He's the one who then ultimately ordered all of the IGeneX testing, and confirmed that I did have Lyme, and I did have Babesia and Bartonella. All the things, the works. The works that you don't want to have.
Lauren: Absolutely. And you're also fortunate … it’s frustrating that we have to mention this, right … that it took you two years to get a diagnosis. And in the world of Lyme, that is unheard of. This is so quick that you got the diagnosis. And you're so plugged into the community at this point, as well. I wonder, do you think it was because you had your mom as an advocate there for you, who stood up — even though she was turned down the first time. That you had someone in the room with you who was pushing for you, and you were eventually able to educate yourself as a patient? Do you think that's the reason that you got your diagnosis faster than your typical patient?
Ali: Absolutely, and I talk about it all the time. And thankfully through my philanthropy work with Global Lyme Alliance and now all the legislative work I do, I've had the opportunity to meet thousands of patients across the country. And so many, by their families and their friends, are abandoned, and they have no one to go through this process with them. Because you go see a doctor that is not educated on it, and they're like, “Oh, no, that's nothing, it’s all in your head. You need an antidepressant.” And people just listen. Thank God, my mom, my family, never questioned me; my husband never questioned me. They just knew. Because when you see somebody go from such a thriving individual to not being able to get out of bed, you just know that they wouldn't choose that. So having my mom at every single appointment with me, taking notes, asking questions, when I really wasn't as capable … I do, I fully credit that with still being alive today.
Lauren: And what about … if you don't mind me asking … I'd love to know also how this has impacted your relationship with your now husband. Obviously, you've gotten engaged and gotten married in the midst of dealing with this diagnosis and going through treatment. So has the diagnosis, in a sense, deepened your relationship, or created its own challenges to your relationship?
Ali: Yeah, I would say absolutely in both ways. And I think that's only natural. My husband knew me for a while before I got sick, so once again he knew me as this very energetic, very ambitious, very social person.
And then ultimately, as my health started to fail, he watched me slowly decline.
So he knew me before and knew me after. And thank God, I would say it made our relationship 20 times stronger. It brought us closer together. He, along with my parents, is my greatest supporter and greatest support system, and really stepped up to the plate in a way that I think most people wouldn't. I'm 27, he's in his early 30s, and normally, when there's not a pandemic, at that age, you’d be going out for drinks and dinner at 8pm at night and traveling and doing all these fun things. Most the time, I'm just unable to do those. So we've had to find other ways to spend quality time together. We make it work. I think communication is a huge thing. He doesn't know what I need, or how I'm feeling if I don't communicate it to him. Because so many with invisible illnesses, often we look fine. Now he's pretty good at being, like, “You're not doing so hot today, are you?” And I’m, like, “No.” But sometimes I do just get up and I’m, like, “Just to let you know, I'm just gonna stay in bed today because I feel horrible.” And he gets it, and says, “Okay, what can I do to support you?” But yeah, communication is a big one, especially if you're somebody that previously was extremely independent.
Lauren: Absolutely. Well, and I wonder as well, because you've talked about numerous treatments but one thing that hasn't come up is mental health support. A huge part of this journey, right, is the grieving process … grieving one's former self if you were previously able-bodied, even going through that process with your loved ones. So was that offered to you at any point? Have you leaned into mental health support? Has that been a part of the treatment regimen, as it were, as well?
Ali: Oh, my gosh, yes. I it took me longer than it should have. The first two or three years, I really just leaned on my family and my husband, and I don't think I realized how emotionally stuck and drained I was in grieving my old self. And then very sadly, and very tragically … every year I host a large gala in Chicago to raise money for research for Global Lyme Alliance and I founded this gala with a co-chair and a very close friend. We did all of our philanthropy work together and community-building and all these things. August will be three years … she also had Lyme disease, and she passed away four days after our second annual gala. And it was then that I finally sought professional help for my mental health. To all the people listening, don't let it take something like that for you to go see someone. It's a very normal healthy thing that even if you're an individual with no health problems, no issues, everyone should have mental health support if they can and have access to it. There's nothing wrong with it. It's like going to the regular doctor, got to do it.
I did a lot of really intensive therapy, to work through that and my own health issues, ultimately, that I had been suppressing.
And to this day, I see a psychologist once a week. I don't want to call it rigorous, because it’s spirituality and meditation. But every single day, I set aside time just to tune out and tune into myself. And I work with an energy healer. I do it all. I'm a fan of it all.
Lauren: Yeah, you're really pulling from the toolbox and picking the things that work for you. But also exposing yourself to all different kinds of healing modalities, which is really important. It's an experiment as much for you as it is for anyone else, dealing with a chronic disease, in trying to find what works for you.
Lauren: So what does a typical day look like for you?
Ali: A typical day for me is a lot different than it was a few years ago. Because thankfully, I am working again. And that is lovely. So every day looks different. I don't try to adhere to any certain schedule, because as you know first-hand, I can wake up one day and feel great; I can wake up another day and not be able to get out of bed. And it is what it is. I just give my body what it needs. I am an insomniac — literally, not even as a joke. I go to bed very late, and I tend to wake up between 8:30 and 9.30. I give myself that time in the morning; I have coffee, I center myself for the day. I meditate, and then I start digging into my work schedule. And then I try every afternoon to give myself a break, so I don't either burn out or exhaust myself. Because for me, as I'm sure there is for most people, there's a very fine line between being tired, and becoming chronically fatigued and exhausted. And sometimes I don't know until after I cross that line. So I try to give myself some time in the afternoon to rest, then I'll do some more work and I hook up to an IV because I have a PICC line; I’m very lucky, I can just do some of my treatments at home to keep myself in check. So I work and I do an IV, and then by the early evening, I finish up working and sometimes I'll do another IV. I will do some meditation, pull some cards, watch a TV show, and then try to go to bed. But other days … like on every Wednesday, I have IVIG and it's an all-day treatment. So every Wednesday, I go to an infusion center and sit all day for six or eight hours, hooked up with five tiny needles in my leg. So I guess it just depends on what day we're talking about, what it looks like.
Lauren: I'm curious as well, because you mentioned that you have now been able to start working again, and obviously this is something that you're working around your treatment schedule. What do you think about … we live in this country where the cultural norm is work/life balance, we hear that term all the time. Work comes first, life comes second. Have you had to work on changing your perception of what that looks like for you in order to get well within this culture?
Ali: Oh, yeah. Prior to getting sick, I founded my own PR firm and I worked like a dog. I lived to work, and I loved what I did. But no wonder I got sick the way that I did; it was not healthy. And keep in mind I was also working mostly in entertainment PR, so with reality TV stars, just energy sucking souls. So it was very draining in a lot of ways. And when I got sick I literally came to terms … I remember saying to my husband and my parents, “I might not ever work again. And you know what, that's fine. If I just raise money for the rest of my life for medical research, fine, so be it. It’s what I’m meant to do if I'm helping others.” I literally had no interest in going back to work, was very, very happy just volunteering and fundraising and working on political advocacy, and all those things. And I had somebody reach out to me that I had met through the Lyme community, and they ended up being my first client, back again, and it was all Lyme-centered, patient-focused, educational. I started and I was, like, okay, I'll try it for a couple of months, but I'm not sure where this is going to go. I’m not very stable, health-wise.
And it took me setting really firm boundaries, and being really honest with myself and with others about what I could and couldn't do.
And also what I enjoyed and what I didn't enjoy. Now I work with a couple of different clients that are all health-, wellness-, Lyme-, patient empowerment-focused, and I think those are the only people that I'll ever work with, moving forward. But it's great, because it's something that I genuinely love, and I never want to do any more work where I don't feel like I'm making the world a better place. It also crosses over into things that I enjoy. It's kind of like deprogramming what we are taught. Not that this was ever instilled in me, but that you had to work around the clock like a dog to be successful. And that you had to be available all hours of the day and night. I mean, it just isn't true. There's way more to life than that. And it's separating out the career and work piece of ourselves from our identity, because we're so much more than that. I don’t know if I answered your question?
Lauren: Absolutely it does. I mean, really, what you're telling us is that getting sick made you shift your priorities, and that's been reflected in the work you're doing — which we're going to get more into in a little bit. I'm also wondering, because you mentioned this doctor early on who said that anyone who tested you for Lyme was a charlatan, and you're a woman walking into the medical system. And we know that often we are told we’re hysterical, and it's all in our heads. I'm wondering if you can talk to us about any instances in which you've been confronted and forced to justify the existence of your diagnosis, of your illness, to people who just couldn't get their heads around it — because they couldn't see it in front of them? What has that been like for you?
Ali: I don't know, in relation to my career, if I ever had that experience. Like now, thankfully. But countless times I've been questioned about how severe my illness actually is. Or, I've been asked, “Oh, are you better yet?” Which I think is something a lot of people, even outside of the Lyme community, get. And I’m, like, “No … it's a chronic illness. It’s not going to go away.”
Lauren: People don't get the chronic part, do they!
Ali: Unless there's a miracle. Please, higher powers, a miracle! But yeah, I feel like I've had to justify and educate to this day that either it doesn't exist, or it's not as bad as we say it is. About two years ago … and Jenny, I'm sorry if you're listening to this, and I don't say your last name, right … Jenny Buttaccio, who's a wonderful Lyme-centered journalist, wrote an article about patient advocacy and doctors and all these things. And it happened to be the same week that The New York Times wrote this article, basically about how Lyme wasn't real and it doesn't live in the body past six weeks. This incredibly biased … it gives me goosebumps still thinking about it, from my head to my toes, article. And so then, a couple of days later, Jenny puts out this article, this other article, that was beautifully and wonderfully written. It went viral on Twitter. And I ended up getting tons of stuff … I didn't delete my account, but I deleted the Twitter app off my phone. This is why I've been off Twitter now for two years, because it went viral. And people started coming after me saying that I was a cult leader. And Lyme isn't real. And you're preying on innocent people, all these things. And I was like, oh, my God, I'm living with this. It is real. How can you be so negligent to that just because you haven't personally experienced this? And I was, like, trust me, if I was a cult leader, maybe I'd be having a lot more fun. And like Creed said in The Office, I'd be making a lot more money!
So it was just kind of one of those realizations, like you were asking about … people not believing it, or having to explain yourself … where it just kind of blew the lid off of my realization that people just have no concept of Lyme, let alone chronic disease, and they don’t have to live that way like we do.
Lauren: Yeah. It's really frustrating. I'm so sorry that happened to you. We know that social media has been a perpetrator in the widespread proliferation of misinformation, right. But of course, the backlash to that is that there are people who are presenting actual information and their own experiences, who then aren't taken seriously. And it has given rise to trolling and all that kind of thing. I don't blame you for deleting the app off your phone, certainly, when it came to Twitter. But it's a double-edged sword, isn't it. Because as a health care advocate, you also rely on these forms of communication in order to get the message out there and to mobilize people.
Ali: Absolutely. It's why I’m so thankful for people like you that out of the goodness of your heart, and because you see a hole and a need, work so tirelessly to produce podcasts and media.
Lauren: I mean, that's the hope, right, that we can create new media that helps shift narratives, because it is really important. I mean, that's how new voices get out there. I know that we talked a bit about not being believed, right? You're presenting as a heteronormative white woman walking into the healthcare system. You mentioned before, and I'd love to dig into this idea of privilege, and prejudice, as it exists in your experience. Do you think that your circumstances might be different if you presented differently … if you were a woman of color, if you were male, walking in and asking for Lyme testing? How has your identity influenced your experience?
Ali: Oh, I think while there are numerous challenges and struggles, and the fight never ends when you're living with tick-borne disease, I think it's 10 times worse for a woman of color, or even a man of color. Or someone with a language barrier. Like you said, doctors already think women are hysterical if you come in in excruciating pain. And that's why I'm very thankful that now there are entire accounts dedicated to, and support groups, catering specifically, supporting people of color, living with tick illness. I am well aware that I am incredibly privileged in countless ways. I'm very, very lucky. And I can try my best to educate myself and help to lift the voices of those living in marginalized communities, but I personally will never know first-hand that experience. Which is why I really try my best … my mom always, growing up, said, “Say little, do much.” And I'm not going to preach on their experience without having lived it. I just think that's wrong.
But I can share readily available resources, I can reach out to all the organizations to say, “Hey, why aren't we showing what a bull’s-eye rash looks like on every single skin tone?”
And I'm not just talking about my Caucasian skin or the skin of a person of color. Every color of the rainbow, why don't we have that on here? Because it appears very differently. Which is not something that I learned until I started following … I think her Instagram handle is @NegraConLyme … and I had this kind of moment … there’s so much that’s not out there … there’s so many people doing very primitive action on social media. If you're posting a quote or something that's very calculated on your Instagram story, it doesn't do anything unless you're doing the work behind the scenes. I don't give a shit what you're posting — you’ve got to actually do the work.
Lauren: Well said. Would you say that racial and gender inequality in the health care system is a public health crisis of its own? Aside from the public health crisis that is the Lyme disease epidemic, would you say that these are tantamount to their own public health crisis?
Ali: I absolutely would. So, I'm a publicist by trade — which I think some people know, some people don’t; I don't share a ton about my career very publicly. But I was pitching a story in December about women in medicine, women in health care, women blazing their own trail … because at one point or another, they were not believed by a male doctor, or they were told that it wasn't as bad as it was. And now they're incredibly sick, or a whole host of complexities. And I was told by this writer that was not actually something … and keep in mind, this is like a premier publication that ultimately we did get published in, but not for what I was originally pitching … I was told by this writer that they cannot print anything saying there are no studies or data to actually back it up. Which to me was just completely mind-blowing, because as a woman, I have experienced it first-hand. An endocrinologist telling me that I was a hormonal woman in my early 20s that needed an antidepressant. I personally have experienced it, and I can only imagine how much worse it is especially for women of color that walk into these offices and are told that — plus something 10 times worse. Or just don't even have access to the care that they direly need. But that conversation I just always go back to, because it's something that I think — and I'm sure you've experienced it as well — as a woman living with chronic diseases and disabilities and people wanting to downplay how bad it actually is, because you’re a “hysterical woman”. It needs to change.
Lauren: It does need to change. I love that you bring up this studies issue — because if you look at studies, it's also quite clear. And we've talked about this innumerable times on the show, it's also very clear that all these studies are entirely biased. So unless we start taking some of these anecdotal stories seriously, especially when they recur over and over and over again, we're doing ourselves a disservice. And science is already biased against women and people of color anyway. And I will say that as a journalist, without the studies, because every story I hear on the show confirms that narrative, doesn't it. And if that doesn't change, then … and here I am, almost 200 interviews later … it's like, give me a break. We know what the story is, at this point.
Ali: Yeah, you need to take all of your episodes and do a case study.
Lauren: I’m down if you are! So, I would love to talk about your advocacy work now. Because this has really become what you do full-time. It's been part of that identity shift for you since diagnosis. So can you talk to us about how you went from someone who required an advocate in your mom, in your husband — to someone who began to be able to reach out to others, and start to change the narratives around Lyme disease?
Ali: Absolutely. I won’t lie to you, and I won't lie to listeners … I still need a lot of help day-to-day, and there's nothing wrong with needing help. I still need my husband and my mom to help advocate for me some days, and I'm very thankful for them. But for me, it all kind of changed once I did get my diagnosis. And I went to my LLMD for the first time, and the insurance denials started coming in. Thankfully, I have access to care. But I realized that there are so many people, whether it's in the Lyme community or not, if they can't pay for their medical care, they're just ultimately dying at some point. Because they don't have the access. And I think that's a crime. I think it's despicable. We're living in 2021, and people are dying because they can't get access to the care they need. I walked out of my first LLMD appointment, and was, like, oh, my God, this has to change. This is unacceptable. So I started researching advocacy organizations. And ultimately, my husband and I … this goes to show you how nerdy we are … sat and read all of the annual reports for the organizations funding research. And we loved what we saw in Global Lyme Alliance’s. This now was four years ago, their last handful of annual reports. And I reached out to their info email and said, “Hey, let me help you!” Months went by, I didn't hear anything back. And finally, one day, somebody emailed me back and said, “Oh, we had just started talking to this other Lyme patient … will you connect with her?” And she and I sat for four hours one day, and she was the first person I ever met with Lyme. And she really educated me on the community and what was going on in the community, or the lack thereof what was going on. And I just knew, from then, that somebody had to do something about it.
I'm only one person, I can't change it all. But I can certainly try to rally the troops.
Lauren: Well, you're doing just that. Talk to us about the initiative that you've started, where you've created a platform in which individuals can really join collective effort to contact legislators. And you're getting change going. You're making it happen.
Ali: Yeah, we are trying our best. So about two years ago, after I had really gotten into the philanthropy community around Lyme disease and was hosting all these events, meeting all these patients, thankfully raising a lot of money for research, I just learned. And it hit me one day that really we're not going to see change on a mass scale until federal laws change and federal research is funded. And I really think the key to this fight against tick-borne disease — and health care on a larger level for everyone … it’s these public/private partnerships. And we need both. So I started getting involved with trying to get the Kay Hagan TICK Act at first passed. And then thankfully, it was passed, and then funded. So I was putting out all these calls to action on Instagram, and I was writing these letter templates and then sending them out to everyone. It got to the point where I was sending it every time to all 600 people. And I was like, oh, my gosh, there has to be a better way to streamline this. And my husband, DJ, was getting his MBA at University of Chicago Booth, and in one of his classes, came up with this concept for automating the advocacy process. So we spent quite a bit of time researching the holes in the system. Let's say you're a constituent living in a district … what's the best way for you to use your voice to advocate for your needs, to your local politicians and representatives. And it turns out that it's letters; letters are the only form of communication that have to be opened and documented and counted. So we got our stuff together, and we built a website and programs, and hired a public policy writer and a printer. And we're just trying to make it easy for people to have their voices heard. That was just through my own need.
Lauren: Yeah, I mean, I think it's incredible, because you realized the need to streamline for yourself. But what you're doing is that you're handing the power over to individuals, to write to 600 people at a time. So what we get is this exponential growth in the effort to create change. We've seen this also happen in the BLM movement, right. A lot of people were posting similar things where you could sign a petition and contact your representatives. So what you've been able to do is build out a system that is literally empowering people at the press of a button to reach countless legislators. Not too shabby.
Ali: Thank you, we’re trying.
Lauren: But this is what they say … there is no try, there's only do. I think you're a living example of someone who was, like … well, maybe if we thought creatively about it … And lined it up and hit a home run.
Ali: Hey, anything to make patients lives easier. One of the things I was hearing from a lot of people was that it just is too difficult for their brain. And I understand this first-hand, to constantly be writing these letters and sending them and mailing them and updating them to the current legislative needs. It's exhausting.
Using your brain some days just to get a glass of water is exhausting, let alone to read legislation and then write to advocate, for it or against it, or whatever it is.
So yeah, that's why we formed Advocacy Express. It’s not for profit, it's not … which really bothered me, I got questioned about that a lot when I first launched it, and I've never made $1 off of the Lyme community. But literally, for the cost of stamps, which is what it costs us, exponentially, which is fine … for the cost of stamps, you can send your representative, your local politicians, either one letter a week, one letter a month, or if you're advocating for something major, you can do something called a letter blitz, and send them 100 letters at one time. And you just know that because we have experts writing them at the deepest level, it’s advocating things specific to tick-borne disease that we need now, like legislation and proper diagnostics. We need the insurance codes to change. We need funding for the Kay Hagan TICK Act, all of these things. I was lucky, I went to DC last year, literally weeks before the pandemic and the shutdown happened. And that, for me, was my first foray into big politics and how it actually works and how things actually get done. And I went to this lobbying day put on by the Center for Lyme Action, and they educated us phenomenally. To put on one lobbying day for an organization, the minimum cost is $75,000. So your average person, you or I, can’t just go and organize and put on a lobbying day. There shouldn't be gatekeeping the politicians, there shouldn't be gatekeeping to having a voice heard or having an elected official be able to say, “Oh, well, you didn't leave your zip code on your phone calls, so it wasn't counted.” Or, "Oh, we just didn't have the manpower to open your form or your email so it wasn't counted.” So we were, like, okay, how can we make this so it's guaranteed. Anyone and everyone can have their voice heard on an issue. So far, it's working. Knock wood. I'm Italian, I've got to do all the superstitious things!
Lauren: Exactly! You’d better knock that wood! So it sounds like the direction that Advocacy Express is going to go in … that this is also about improving our healthcare system, not just for Lyme patients. I know that you have your eyes on a bigger prize here in terms of reach, and the people that you'll be able to serve. But from your experience and the experiences of individuals who you talk to in the chronic disease community, talk to us about in what ways you think the healthcare system is working here in the US, and in what ways it's falling short. What are the pluses and minuses of this big old system that we have going on here. And I say big old system because it is sort of a dinosaur at this point, ready to be extinct.
Ali: Yes, it’s an antiquated system.
Lauren: What’s working, and what’s not working?
Ali: So I'm going to boil this down to a few different things, or we'd literally be here till midnight, and you'd be asking me to stop talking.
Lauren: I don't think that's possible, but I want to hear it anyway!
Ali: I think, to me, the main problem is that doctors, or at least in my personal experience, and what I've heard from a lot of other patients — even outside of Lyme, people with chronic diseases, rare diseases — is that traditional Western MDs, like in your standard doctor's office or hospital system … they try to fit you in a neat, tidy little box. And if your symptoms fall outside of that, that's when you become hysterical or a liar. Or they tell you it's psychosomatic or it's an anxiety issue or a mental health condition. And doctors … I just think it comes down to the educational system for medical professionals.
In medical school, you're taught about all the basic diseases that pharmaceutical companies can treat, but you're not taught enough about chronic diseases, and how to help people with chronic diseases or rare diseases.
I understand not every doctor can be educated on every single condition. But I do believe that every doctor should be educated enough to know … hey, if this isn't something that I've heard of, or if this isn't something I've experienced, I know what specialist to send you to. So that ultimately you just keep getting sicker and sicker — until you can get the help you need. I think the other big part of it for me is in relation mostly to insurance companies. You shouldn't have to keep getting sicker to get approved for the type of care that you need preventatively; there's not enough done in preventative medicine. And one example for me is … we went through a year of getting denied for Hizentra, which is the IVIG drug that I desperately needed, to the point where I basically became bedridden. And it wasn't until then, because my levels are so low. So I could be done by now. And I could be off of their expenses over at my insurance company. But instead now I'm probably gonna have to do this treatment for the rest of my life, because they denied it for a year. I hear that from patients all the time. Even with all these other issues … last week, I was having a conversation with a young woman that has gastroparesis. And her insurance company keeps denying her treatment, literally because she is not sick enough. I said it before … I think it's a crime, it has to change. And unfortunately, change takes a lot of slow and steady effort. So I'm trying to put in that slow and steady effort now to hopefully see those changes for future generations.
Lauren: I think you nailed it. Especially this concept that because we have a sick care system and there are private interests involved, these pharmaceutical companies aren't going to profit when someone's using a medication short-term. And that is what is killing people. So I'm really glad that you've called that out so specifically. I'd love to pivot into, on that heavy note … what you have to offer the community that's tuning into this episode. I'd love for you to share some tips for someone who's living through a chronic disease, specifically Lyme. What Top Three Tips would you offer for someone who is living with this diagnosis, is living with invisible chronic illness, and is feeling all at sea?
Ali: I think the first one … and it sounds very simple, but in reality, it can feel more complex than I guess it sounds … just knowing to give yourself grace every day and not beat yourself up over whether you can or can't do something. You’ve just got to give yourself a lot of grace. In the same way that if your best friend came to you, or your brother or sister came to you and said, “This is what I'm struggling with,” or, “I'm so frustrated because I can't do X, Y or Z,” you have to be just as kind to your self internally as you would outwardly to someone else. I think the second thing — and this is more, I guess, a thought than a tip — is to try to always remember that your illness is not all of who you are. When you're in the thick of it, and you feel like you're dying — as even I do some days, five years later — I still try to remember all of the amazing people I have in my life. I have three insane standard poodles that bark all the time. But I joke around; I’m, like, ‘You guys are the love of my life.” My poor husband! But there's so many other things to enjoy or get these small slivers of joy from, so even when it's really tough, just remembering there is a light. Not being afraid to ask for help — there’s nothing wrong with it. We are taught to just process our emotion, process our needs. Sometimes you’ve just got to ask for help. And there's nothing wrong with it. I used to ask my husband to help me go to the bathroom.
Lauren: That’s marriage for you!
Ali: Yes, anyone can do it. I'm sure there's like 50 million more things I can think of, but those are the main things that I wish someone had told me.
Lauren: There’s a lot of grace there, I think. Grace and compassion. You mentioned your three standard poodles, and married life … and I'm wondering what the Top Three things are in your life that give you unbridled joy, that you're unwilling to compromise on. Obviously, you've had to adjust your lifestyle around your diagnosis. But what are your Top Three comfort activities, the places that you turn when you need to light yourself up? Where does Ali go?
Ali: I feel very lucky that I have a lot of things that really light me up and make me so happy, and I'm not going to put them in any certain order because I don't want to rate them! But like I said, I have three dogs; I love my dogs.
One of them, actually, named Scout, is my service dog who alerts me with my dysautonomia before I'm going to either get dizzy or pass out.
I literally joke that this dog is the love of my life because who else can come up and smell my breath and tell me what's going to happen to me? No one! So I love my animals; they get me out of bed in the morning. And my family and my close friends that have rallied around me in the patient community. And honestly, sometimes it's also the thought of our community and driving change that gets me out of bed, on my worst days … or keeps me going. Because this is an issue that is greater than just me. I always like to tell people, this isn't about me, this is about us. This is for us. And then I also take a lot of joy in just really simple things. Like I said, I love meditation. I love anything creative. I love doing watercolor. I also try to do a lot of things for my brain, neurologically, to keep it active and exercise it. And actually, I think this is really funny … Legos are a great way to do that.
Lauren: I love that. It's a return to childhood imagination.
Ali: Yes, it is. So I do a lot of little Legos. And it sounds so silly, but it just makes me so happy. And outside of that, I'm Italian … I love to eat. I love to cook. I love to travel. Just experience life, I guess. I'm sure you know, first-hand, after you get diagnosed with a chronic disease or anything … one good day, how do I make it count?
Lauren: Well, I think it really is about that recalibration, isn't it. It's about that energy shift where you're able to find joy in the little things. You and I mentioned before we even started the interview about just having a mocha instead of a coffee some mornings. What a delight. I think a lot of people are starting to connect to that in lockdown, because the joys have become simpler. And so we can relate to that narrative for sure now.
Ali: Yeah, absolutely. And it's like you said earlier, the people that have the capability to work most of the time, more often than not, they live to work. And I hope at the very least with the pandemic, people take out of it that there's so much more to life. And even if it's as simple as sitting and having a mocha every morning. How great is that? It's beautiful.
Lauren: And as you're saying that, I've got the birds chirping outside my window.
Ali: I love it.
Lauren: The tweets are going crazy. The birds are all in agreement with you. I’m wondering what your ask is for listeners today. What can they do to support you and the Lyme community in your continuing advocacy efforts?
Ali: Oh, gosh, there's so many things. I would say the first thing is not necessarily related to me … but just take care of yourself and give your body what it needs today, and show your self-love and self-care in any form that you need it. Sometimes it's hard just to get through the day, and literally clicking a few buttons feels like too much. So if that's all you can do, that’s fine. If you have some energy, and you feel like getting involved or showing some support or doing something, I would say, my biggest thing right now is advocating for legislation and patient rights. So we have an Instagram, @AdvocacyExpress, you can go check out what what we're doing and what we're all about there. You can go to AdvocacyExpress.com, and start, literally this week, sending all of your political representatives letters to advocate. We also have a page on the website where if you suffer from a different chronic disease, or you're advocating for lupus research, or whatever it looks like, because we have the infrastructure in place, I want this to be a tool for everyone and anyone. So you can send us a cause that you're working on. And we will have our experts work with you to craft a letter that you can then send to your representatives and get your community to sign up at no cost other than covering stamps.
So my biggest ask is for people, if they have the energy and are able, is to just step up and use their voice to drive change. I think that's the biggest thing in any capacity.
Lauren: Yeah, well, you're walking the walk and talking the talk. So what is next for you in your advocacy journey, as well as your wellness journey? Because these are both ongoing stories in your life. What’s next?
Ali: I'm almost hesitant to answer that question. Because if you had asked me that, at this time last year, I would have never said that I'd be trapped at home living in an unprecedented pandemic. So who knows what's next. I just hope that I'm still progressing forward in my health journey, upward trending as I fully believe IVIG will take me. So I'll still be doing that, at least for the next year, year-and-a-half. And as far as advocacy goes, I am meeting at the end of this month with all of the Midwest senators and representatives, virtually, to continue advocacy and continue advocating for patient rights on a lot of different levels. These meetings that took place all over the country last year, even outside of me, are ultimately what got the Kay Hagan TICK Act passed and funded. So I'm very, very hopeful on those efforts. I’m also, with a fellow Lymie, Meghan Bradshaw, we are planning another fundraiser for Global Lyme Alliance in April, which I'm very excited about. So I feel like I always have like a couple of things going on. But the best place to find those things is on my Instagram, because it's just kind of constantly ongoing, like you said.
Lauren: You’ve got your own podcast, too.
Ali: Yes, for fun, my very close friend, who also is a spiritual medium, and I host a podcast called Slightly Spiritual. I’m very beginner in that world. And she's very, very high level. It's so hard when you're dipping your toe into spirituality. You go on to Goop and they’re, like, ‘You need this $1,000 crystal …’ and, ‘You need to see this shaman …’ And I’m, like, what planet are you on?
Lauren: Pretty much!
Ali: So it's so nice, because I get to explore all these different healing and spiritual modalities, with my very good friend who understands it way, way more than I do. So I feel just very lucky that I get to have all those conversations all the time.
Lauren: I think it’s so fun. And remind everyone where they can find you on social media and get connected with the work that you're doing.
Ali: The best place to find me is at @AliTMoresco on Instagram. I always respond to messages, comments, whatever it is. So if you're looking for any chronic disease, or tick-borne illness resources, please, please, please reach out to me, because I am always here to listen or provide resources.
Lauren: Ali, is there anything else you'd like to share with everyone before I set you free?
Ali: Nothing groundbreaking, I would just generally say, don't lose hope. And eventually, something will click. It took me five years to find IVIG and I almost feel like people hate it when I tell them that. Because a lot of times I hear back, “Well, I don't have five years to waste like you.” And I’m, like, “I didn't have five years to waste like me!” So, it might take some time. But eventually you'll find a doctor, a treatment, things that work. And you've just got to keep going, and it will happen.
Lauren: Yeah, hang in there.
Ali: Yeah, hang in there.
Lauren: Ali, it's been such a pleasure having you on the show today. I'm so glad we finally connected. Thank you for being such a gracious and elegant voice for this community and for creating work that empowers others. It's the sauce. So thank you so much for all you do for the Lyme community and beyond. And we can't wait to continue to see how your journey develops.
Ali: Yes. Thank you so much. Like I said, this is a total honor. And I'm blushing now. It gives me so much more motivation going forward. So thank you for all you do.