Parkinson's Policy Podcast: Jessi Keavney

In this episode of the Parkinson’s Policy Podcast, we sit down with Jessi Keavney, a dedicated Parkinson's advocate and member of the National Council. Jessie shares her powerful perspective on the current landscape of policy advocacy, and the critical importance of community engagement in driving legislative change. Tune in to hear her insights on what the future holds for Parkinson's research, care access, and policy reform.

In this video, we cover:

- Jessie’s personal journey in carrying pathogenic Parkinson’s genes and her path to becoming a policy advocate.
- The current legislative priorities for the Parkinson's community.
- How individuals and families can get involved in advocacy and policy work. 

Transcript

SPEAKER_00 0:12

Welcome everyone back to another episode of the Parkinson's Policy Podcast, where we advocate together to raise awareness and advocate and advance meaningful policy for the Parkinson's community. From Washington, D.C., directly from the U.S. Capitol and beyond, we bring together senators, representatives, researchers, and advocates to amplify the voices of people living with Parkinson's disease and the community. My name is Dr. George Ackerman, the founder of Together for Sharon and Sharon's son, along with my co-host Margaret Preston, the president of Power Over Parkinson's. I want to welcome you back to another episode.

SPEAKER_01 0:47

Yeah, thank you so much, George. I'm so excited to introduce our next guest. Um, Jesse Keveny is a caregiver advocate whose father, uncle, grandmother, and grandfather lived with Parkinson's and dementia. After learning she carries the pathogenic genes for Parkinson's disease, she has spent more than a decade participating in over 40 biomarker and observational research studies focused on early detection and disease prevention. She's a leading advocate in prodromal Parkinson's research, contributing as a conference speaker, research, and grant consultant, and co-author on multiple peer-reviewed scientific publications. Jesse's a practitional CFO, a certified management accountant, and graduates Suma Kum Laudi with a master's degree in business administration. Jesse, thank you so much for being with us today and your amazing work in advocacy and research.

SPEAKER_02 1:42

Thank you very much, uh, Margaret and George. It's really a pleasure to be here with you guys. Thank you.

SPEAKER_00 1:47

Well, I uh agree. Welcome to the show. It's an honor. I had the chance to meet you. It was just perfect timing. And then also the exciting news on the council. We both want to congratulate you and uh you're our voice too, so no pressure, but we know we're in good in good hands and hope to be a part of that process, even from the outside. I mean, I always tell Margaret, I feel like we're uh now reporting channels of the news for uh Parkinson's policy because it's nothing like it out there for some reason, but I think it's not just part of history. But I know when you were named and we just saw the results, I was so really excited, and that's what inspires me to want to keep uh advocating. So thanks and congratulations.

SPEAKER_02 2:25

Thank you very much.

SPEAKER_00 2:27

Uh well, as we get started today, we're curious what encourage you to, you know. I know you have a history, unfortunately, and lost uh myself too. And Margaret's dad is battling today. I'm thinking of him literally 24-7. Even when I want to take a break, it motivates me to keep fighting. But was there something specific or, you know, what encourage you to really stand up, be a voice, and fight back in a way?

SPEAKER_02 2:50

Yeah, I think it it's it's really my family, is my why. Um, you know, my with my dad and my uncle um caring for them with Parkinson's and knowing that my grandfather had Parkinson's, then obviously um, you know, I I have a genetic variant that increases my risk of Parkinson's. And then I think about my children, really. Um, and I want a future without Parkinson's for them. And so everything that I'm doing as far as advocacy and and research and trying to really move the needle is is all about um hoping that we can uh cure and treat Parkinson's for those living with it today and also um preventing it for the future.

SPEAKER_00 3:33

Yeah, and same uh three children and often Maureen. First, I have to explain why their grandmother's not here today, and that's already heartbreaking. But then after you think you have a minute, you jump up and realize you also have to fight for yourself, for those battling today. And again, uh grateful for the work you're doing, but excited for what's to come.

SPEAKER_01 3:53

Yeah, I think we're all tied together, not just through this disease, but certainly having children and understanding the complexities and devastation of the disease and trying to ensure our children um at least have a reduction in toxins, et cetera, and also a better understanding of the disease and its drivers and better therapeutics, et cetera. So um I want to thank you for that, uh, serving the next generation as well. Um as George noted, I wanted to congratulate you on being on the National Council. Um, we're so excited to see all that you all accomplish. Um, I wanted to ask you what that means to you as now a member of the National Council.

SPEAKER_02 4:35

Yeah, I think we're still pretty early in this process. Um, you know, so everything's not fully defined yet. So we're still trying to figure out um, you know, where we're going with it, but there's there's a real sense of momentum and excitement about it. And I'm really excited that, you know, for the sick uh for the first time, you know, we're we're bringing real coordination to um research care and prevention. And historically, those areas have been rather fragmented. There's different agencies, there's different priorities, and we're not always aligned on that. So I'm really hopeful that we can create a lot of synergy and we can really use uh resources more efficiently than we have in the past, and that we're not duplicating efforts and that we really gain alignment on all of that. And I see a really important shift happening. Um, it's really going from reactive care to proactive care. And we're, you know, traditionally diagnosing Parkinson's after a significant amount of neurodegeneration has already occurred. And we're starting to talk about identifying people earlier, even in the at-risk and of the drawing phase. And we're starting to intervene sooner. We're really starting to initiate prevention trials now that we're doing a lot of work on some of the environmental aspect, trying to stop it before it even starts. And I think that's a really significant development. And then there's precision medicine. Um, that's something that I'm particularly passionate about, even in my own family. Um, people with the same genetic variant have very different pathology in clinical courses. And I think that really uh reinforces that people are not averages, and our approach to Parkinson shouldn't be either. It's it's very individual. And we need to figure out what's causing individual people's Parkinson so that we can actually pinpoint and target that and be able to treat it and to cure it. Um and if we get this right, we're not just managing symptoms better, we're actually changing the trajectory of the disease. And so that's why I think this plan is really important is to gain alignment on how best to do that.

SPEAKER_01 6:46

How many folks have we met along the course of this journey? With, well, I think I had Parkinson's five, 10, 15 years prior to diagnosis. And the fact that we are now with your advocacy waving a flag on saying that's not right to live with neurological disorder that amount of time without diagnosis, um, is very meaningful so that we can really mitigate that phenomenon that shouldn't be there to begin with. So I appreciate that advocacy as well.

SPEAKER_00 7:16

I was excited to meet you in DC and advocate together, excited for this show, but even more excited for the uh June, the first official part of history. It's uh the first ever council meeting. And I hope Margaret and I might even try and pull some magic and it won't be the live, but we'll do something, you know, here for everybody. It's uh almost like the you know at the sports games, but this is more important. So I'm uh uh really excited to you know not be in the room, but think of you as you're uh there fighting for all of us as a former, unfortunately, caregiver as part of the National Pantheim Parkinson Disease Council. Now it's newly named, but what are the uh most significant priorities currently being addressed? I know it's still early, and how do you see this uh plan transforming care, research, and prevention efforts nationwide?

SPEAKER_02 8:03

Yeah, I think it's uh a lot of what I what I just said. You know, we're like I said, we're still really early in the process, so we haven't really defined all those priorities. A lot of our first work is going to be taking stock and inventory of what's currently out there, um, determining um, you know, what our gaps are, and then um, you know, coming up with ways that we can utilize um the resources efficiently. Um, and then um, you know, one of the first steps is figuring out what what are we current what do we currently have, and then what are we missing, and then how do we get there and what's the best way to attack that? So I think that that's really kind of a uh something that we're really trying to work towards right now.

SPEAKER_00 8:49

I think it's also amazing that we can, you know, meet like this now before, and then hopefully in the future, if not just follow up, but keep in touch just to see the progress or the lack of. So it's uh as we know, we're all excited. I remember jumping up, even though my mother, you know, it's kind of too late, but excited for everyone else still today when the plan was passed. And then as we all know, now it's two years moving forward, but it's still uh the best things are you know yet to come. So I wanted to thank you again for that.

SPEAKER_01 9:18

Thank you. Yeah, thank you so much. As someone living with the Parkinson's disease genes, um, and having a family history of this disease, how do you think current healthcare policies fall short in addressing the long-term day-to-day realities of the disease? Um, we know it's so complex and unique to the individual talking about precision medicine. Um, and what specific changes would you prioritize to better support quality of life right here as the disease progresses?

SPEAKER_02 9:50

Yeah, I think um, you know, Parkinson's is often uh just thought of as a movement disorder. Uh, but the reality, as you know, is much broader than that. Um, it's cognitive changes, it's sleep disruption, it's autonomic issues. Um, and there's really a significant caregiver burden as well. And unfortunately, a lot of that is invisible, so it's harder for people to really see that and to understand. And it unfolds over many, many years. It spans, um, you know, it can span decades. Um and from the outside, people don't see the physical pain. They don't see the mental fatigue. And um, there is a real frustration and gradually losing your independence. And all of that takes a real emotional toll, um, not just on patients, but also on families. It really affects multiple people in the circle. Um, and there's a major issue with fragmentation. Um, patients are often navigating neurology, their mental health and physical therapy, and so much more, and without much coordination between all those different providers. And not everyone has a care partner even to help manage that. Um, I have many friends with Parkinson's who are doing this alone, or they have families that are, you know, simultaneously trying to juggle jobs and kids and caregiving responsibilities. And it's really, really difficult. And so if I could prioritize changes, um, I would probably focus on three things. Um, expanding access to multidisciplinary care, um, supporting caregivers more intentionally, and aligning um reimbursement with quality of life. Um, it's not just simply reimbursing um clinical incidents or procedures of loan. It's really about the whole picture. Um, because Parkinson's really isn't just a clinical condition, it's a full-time life management challenge. Um, there's so much that goes into quality of life and managing it over many, many years.

SPEAKER_00 11:58

I've never dreamt of being an advocate. So I mean, I was prior to my mother being diagnosed as a law enforcement lawyer and fighting for victims of crime and their families. And then I kind of got swept up in advocacy because of the loss of my mother. And uh she in a she had a battle everything for 18 years, but she felt alone, and I didn't even know the word disease came after Parkinson. That's her uh long story there. But as we all sit here literally live, we're all advocates, we're advocating, and we do it really 24-7 until there's a cure. But uh, as advocacy plays a critical role in shaping policy, as we saw at the forum, what can individuals, families, and communities impacted by PD do right now to help drive meaningful change, ensure this plan and the council has a real lasting impact?

SPEAKER_02 12:51

Sure. Um, you know, I think I think a lot of people do wonder, you know, what they can actually do to make a difference if they're just a single person. Um but there's actually a really there's a few really powerful ways that I think people can contribute. Um, you know, for me personally, um, the first thing that I think of is participating in research. Um, that can be observational studies, it can be biomarker research, um, there's clinical intervention trials and even now prevention trials. Um, and you don't have to be diagnosed. Um, research needs healthy controls too. And that's where uh caregivers can can come in. They they can participate in research too. It's not just patients. Um, and then for those of us that are at risk, there's um, you know, that's where we can have the real opportunity to shape the future is is is starting much earlier. Um I guess the second thing is sharing your story. Uh data is important, but policymakers really um, you know, they really respond to real life experiences. And when people speak up about what it's actually like to live with Parkinson's or how to care with someone um with Parkinson's or related disorder, um, it leads to better, much more informed decisions. So continue telling your stories and and making it a real um personal connection. And I guess the third is still engaged. Um this national plan is a huge opportunity, but it only works if the community stays involved and holds everyone accountable so that we can see this all the way through implementation. Um, that includes things like submitting public comments. Um, there's a way to do that. You can find it on the website and continuing to provide input so that we can all work together and gain uh really genuine alignment on how to do this and and to move it forward. Um, and I think this is one of those moments where individual action can genuinely influence national policy, and that doesn't happen very often. So I think it's a really exciting time for all of us.

SPEAKER_00 15:00

I remember when we left DC, it was really the work starts when we get home. And that's what we always say here on the show that everyone literally listening can reach out for free. It doesn't voluntarily, but it's important to write to your representatives. I know after every show, I'm in South Florida and I won't say a name, but I write to my representative every single show. Still haven't gotten it in a year, but I'm still gonna after we close, I'll be writing him again and just for a few minutes if they want our support in the community. It doesn't matter what party needs to start listening. And again, I feel you'll be a voice for soul in DC. So thank you.

SPEAKER_01 15:36

Thank you so much. I wanted to ask about kind of talking about early diagnosis specifically. Um, what reforms do you believe um will really be necessary to improve early access to early diagnosis, specialized care, and supportive services for Parkinson's patients really across diverse populations, including veterans?

SPEAKER_02 15:58

Yeah, I think um, you know, there has been a lot of talk about genetic testing in biomarkers, and I think we've come a long way there in identifying people earlier before symptoms um progress. Um there's great work happening through initiatives like GB2 and the Parkinson's Foundation to increase access to diverse populations. And they're really going globally and trying to find those people that wouldn't normally have access to these types of genetic testing and biomarkers. Um, one thing that I would love to see is more clinician education around ordering and interpreting these tests. Um and they're not always very comfortable with um biomarkers and genetic testing. So um, and also for me, um, one thing that I'm very passionate about is openness to returning uh results to participants in research so that they can actually use that information. Um personally, um, I'd really love to see something like a portable personal research record, very similar to someone's personal health record, that individuals can then choose to share with their care team. I know my son and I participated in several research studies at the NIH, and they actually did have some of my results and reports that they were able to put to my to my health record um in a separate section. So that was very interesting. Um, then I can then, for instance, my pedigree, I can then show that pedigree to to my doctors, and they have it. And I can also pass it along to other researchers that are that I'm participating in other research studies. So they were all um sharing information. I think data sharing is very um very something that I'm very passionate about. Um and then I think we we need faster and broader access to specialized care. Um, not everyone can see a movement disorder specialist, unfortunately. I think um, you know, we have a shortage of specialists in in the area, but I think um, you know, focusing on telemedicine and regional centers of excellence is going to be key to making making sure that we get to those people that normally wouldn't have access to a movement disorder specialist. Um and then there's integrated care. Uh Parkinson's, like I said earlier, is a whole body disease, um, but patients are often left to piece together um their own care teams um between neurology and mental health and sleep and GI. And my dad and my uncle had significant issues with uh neurological issues that were very much related to their Parkinson's disease. Um, but we need to build all that coordination in the system and making sure that it's not left to just to the patient to make sure that all these providers are talking to each other and they all understand what's going on in the entire course of the disease. Um and of course, like you were mentioning, just discussing um you know, and addressing disparities because access to diagnosis and care still depends on where you live or your background. And that's especially true for veterans because veterans have an increased risk of Parkinson's or language disorders due to environmental exposures and toxins. Um, and so in my own family, my uncle was actually a Vietnam veteran. And I know from um being his power of attorney and his healthcare proxy and the way taking care of him in the last few years of his life, it was shocking to me trying to navigate the VA system. Um, it was very slow and frustrating. And I think there needs to be a lot um done to to help that process. So there's not as much bureaucracy and red teeth and in trying to get uh the help uh they deserve. Um so when I think about reform, I'm not thinking so much in abstract terms, but how do we make that experience better for the next person? What what are we missing and how do we make it better?

SPEAKER_01 20:05

That's really well said. I think simplifying it, right, is often a big part of the job, simplifying it and making it better for the next person seems so simple, but something that could really change the trajectory in a lot of different ways, diagnosis, therapeutics, um, and and and things to help people live well with the disease right now. Um, I especially appreciate the piece in terms of just creating higher level education for um general practitioners um and kind of your first line uh medical team to getting them a little bit more equipped with not only the disease, but some of the genetic factors associated with the disease, I think is so important because they are often the first line people go to. Um, and that can make or break uh leading to a diagnosis in a timely manner. So um I appreciate all the things you noted there. Um there's a lot of work to be done, but I know um with a clear vision, such as yourself that you have and and the rest of the council, I know we'll we'll see some movement, some positive movement.

SPEAKER_00 21:09

Yeah. I also worry because as a son of someone, unfortunately, who had PD. I did the DAT scan, didn't show anything, but then they turn around and said, doesn't mean tomorrow you won't be diagnosed. And then I want to do the PD generation, but they don't allow someone unless you have Parkinson, I hope they'll change it. So it's about 600. Might do it on my own this summer, but it's still kind of don't know how accurate you know a lot of these things are. But uh again, through the uh council, I hope we'll be seeing much more. I also wanted to uh thank you for your work uh in the past, present, and upcoming, and hope we can continue to be a part of it uh side by your side, helping in any way we can. And we just want to thank you uh for your time today. I'm gonna send the show uh back to uh Margaret.

SPEAKER_01 21:56

Yeah, I just I would like to echo uh George's sentiment.

SPEAKER_02 22:00

appreciative of you taking action um because you didn't have to uh what you're doing is truly monumental for so many people um and i knew i know you collectively with the council and those us uh those of us on the peripheral cheering you guys on will do so much good for our community so thank you for taking action and sharing your voice and experiences and being so passionate for the next generation thank you very much and um like i said before make sure that you're utilizing the the avenues to submit your public comments um all of those do go to the advisory council um because we we really need everyone's input and feedback in order to make sure that we're um driving this plan forward and that we're we've got everyone's input so thank you very much for having me here it was it was a pleasure speaking with all of you today I think I speak for George you're welcome back anytime and you kind of made the whole the whole show was encouraging but do you have any message of encouragement?

SPEAKER_00 23:04

I know we it's always I feel like this is the movie where part two is coming but we can't talk about it yet because you don't want to give all this details and we don't we're not aware a lot but what message of encouragement can you leave the Parkinson's community with today?

SPEAKER_02 23:19

Yeah I've I've been participating in research really for the last 13 years and um I am I am genuinely hopeful. I'm genuinely optimistic I I do feel like we are moving a lot towards precision medicine. We're getting better um I know sometimes it can seem really slow um but I think we're we're headed in the right direction and I think you know there has been a lot of progress lately and um I I think we're we're getting there. So um just don't give up um continue to advocate and to share your stories and um all of us working together where I think we we can all make a difference.

SPEAKER_00 24:01

I really want to thank you again Jesse for your time and friendship. I want to thank my co-host Margaret of course everyone behind the scenes at Power Over Parkinson's Adam and everyone we love you and we especially want to thank this uh incredibly encouraging and inspiring community feel like we're going through part of literal history now with the uh seating of the council and so much to come and you could be sure uh as I will joke today we're uh us reporters here at the front line in the Parkinson's community and the show and hopefully one day the station will uh really be the first to report some of the uh impactful policy coming through especially direct in June from the council so I want to thank you Jesse thank Margaret thank everyone too for listening please share the show please support Jesse too and all her work not just uh here in uh the council but also outside in the community this has been another episode of the Parkinson's policy podcast where we advocate together to raise awareness and advance meaningful policy for the Parkinson's community please stay tuned we have a lot more shows to come because we still have work to be done you can be sure the three of us will be fighting right by your side see you soon thanks everyone thank you on the eye