Parkinson’s Policy Podcast Episode 8: Anne Hubbard (APDA)

In this episode of the Parkinson’s Policy Podcast, we sit down with Anne Hubbard, Chief Public Policy Officer to discuss the latest policy issues impacting the Parkinson’s community. From advocacy priorities and healthcare access to ongoing legislative efforts, Anne shares insights into how policy can shape better outcomes for people living with Parkinson’s and their families. Tune in for an informative conversation on the work being done to advance support, research, and patient-centered care.

Transcript

SPEAKER_00 0:11

Welcome everyone back to another episode of the Parkinson's Policy Podcast, where we advocate together and raise awareness and advance meaningful policy for the Parkinson's community. From Washington, D.C., straight from the Capitol and beyond, we bring together senators, representatives, researchers, advocates, and so many other individuals making such an important impact today in society, as well as amplify the voices of people living with Parkinson's disease. My name is Dr. George Ackerman, founder of Together for Sharon, joined by my co-host, Margaret Preston, president of Power Over Parkinson's, and we want to welcome everyone back to another episode.

SPEAKER_01 0:50

Thank you so much, George. I have the honor to introduce our next guest, Ann Hubbard, was appointed Chief Public Policy Officer of the American Parkinson's Disease Association, also known as the APDA, in August of 25, to create and lead APDA's Department of Public Policy and Advocacy, developing strategy in the critical arena and building APDA's presence at both the federal and state levels across the country. And collaborates closely with other leading PD organizations to maximize our collective impact for the Parkinson's community. And brings a wealth of experience in strategic leadership and health policy and advocacy through stakeholder engagement, along with a strong record of effectively working directly with members of Congress and various federal regulatory agencies. And joins the APD at APDA after serving as a success successful leader at the American Society for Radiation Oncology, or Astro, as the director of health policy for 11 years, where she led efforts to inform Medicare and private payer of policies that impact the practice of radiation oncology. Part of that, she held senior roles at the Maryland Hospital Association and the Maryland Department of Health, among others, consistently driving meaningful change through her strong leadership and policy expertise. Anne has a BA in government and politics from the University of Maryland at the College Park and an MBA with a concentration in finance from Loyola University, Maryland. Anne, we can't thank you so much for being our next guest on the Parkinson's Policy Podcast.

SPEAKER_02 2:23

Well, Margaret and George, it's a pleasure to be with you all. Thank you so much for the invitation. I'm glad we're getting a chance to do this.

SPEAKER_00 2:33

First thing how uh, as you likely know, we've met at MDC, but the APDA has a special place in my heart. When my mother was battling Parkinson's in South Florida, AP Day literally showed up and some, even though it was kind of you know late in harsh stages, it was something that resonates and sticks with me 24-7 beyond and really drives me to continue to want to advocate for others. So I want to thank you and the entire organization always for so so such incredible support.

SPEAKER_03 3:02

Well, thanks for mentioning that, George. You know, APDA is an organization that is very much um community-based, grassroots, and um we're here to show up for um people living with Parkinson's disease and their families. Um we have, as you probably know, uh education and referral centers across the country, but also state chapters that provide resources and referral information for people living with Parkinson's. Our goal is to improve the lives of those living with Parkinson's and those who care for them as well.

SPEAKER_00 3:32

Thank you for that. And uh as we start this journey together today, you know, was there something that impacted you to want to encourage you to go into the world of advocacy, specifically policy, especially since this is something I'm surprised as an attorney uh that's fairly new, but uh really at the forefront of uh advocacy today.

SPEAKER_03 3:52

So um I'm glad you asked. Yeah, my connection with Parkinson's really began um just before COVID. Um, my father was diagnosed um with Parkinson's disease. And um, you know, like many families, I think we were all a bit surprised. Dad had always been a super active person. Um his schedule was always busier than mine. It was hard to keep up with him some days, but um we noticed that he had started shuffling. And um, after a couple of doctors' visits and then ultimately a DET scan that um confirmed it, um we learned he had Parkinson's. And so not only were we adjusting to, you know, kind of a new schedule with the medication and the um the need to maintain his activity, we were also going into COVID. And so that was a real struggle for our family. Um, on the other side of COVID, um, I'm happy to report that that dad's doing great. Um, he continues to engage um with the Parkinson's community through his local Rocks City boxing. Um, he's an active uh square dancer. But um, you know, until dad got his diagnosis, it was not really um a disease that was on my radar. And the more I learned about it, the more I realized that it had been um, you know, significantly underfunded by NIH. And there was a real advocacy need around Parkinson's disease. And so when the opportunity came up um to join the team at APDA, I threw my hat in the ring and I can't tell you how happy I've been since I've joined uh APDA almost now 10 months.

unknown 5:25

Wow.

SPEAKER_00 5:25

Thanks. We send our love to you and the whole family and want to send the show to Margaret to start us off.

SPEAKER_01 5:31

Yeah, um, and your your story and your dad's story sound a lot like my dad, in terms of being very active, got a Parkinson's diagnosis and continues to be very active and keep going. So cheers to that. Exactly. Cheers to that.

SPEAKER_03 5:44

Um just gotta keep plugging away.

SPEAKER_01 5:47

Well, I would be remiss not to kick off our conversation um without noting uh the recent announcement from Singenta that they were going to cease producting a pear quoi. Um, you know, I I think it's important to discuss this, what it means from an advocacy standpoint, and can we take collective side relief or is the work still in front of us?

SPEAKER_03 6:08

Uh it's a good question, Margaret. I will say that when I saw the announcement, I thought, wow, this is a pretty incredible step for an company like Singenta to make this announcement. Um, but but the work isn't over. Um, just because the company is going to stop production doesn't mean that um sales of paraquat are going to come to a standstill. It doesn't mean that there won't be other companies out there um producing and um selling paraquat. Um pariquat is a generic um chemical. And so it um it will continue to be utilized. And really until it's banned, um, until it's banned, that's really not the not not quite ready to take a deep breath and a sigh of relief. And so that's why one of the key things that we're working with our friends at uh the Fox Foundation and the Parkinson's Foundation on is um state-by-state wide bans on um the use of Pariquat. And it's of course something we're continuing to keep an eye on at the federal level as well. Um EPA administrator uh Lee Zeldin tweeted um in January that um the EPA was going to revisit um Periquat. And um we're hopeful that um that will enable the community to have more opportunities to engage with the EPA on the impact that Periquat has on Parkinson's patients. And um, you know, again, that process will take some time, but uh, you know, these are good steps in the right direction, but certainly not the end of the fight to ban paraquat.

SPEAKER_01 7:39

Thank you for sharing that. Uh if I can add, we are so incredibly thankful for the work being done at the state level and with various states having legislation right now. Um, I had the opportunity to testify against our own bill um 1375. Uh again, it was tabled until 2027, but the work was still meaningful and fruitful and that we were able to educate lawmakers and set the groundwork for hopefully a productive session next year as well.

SPEAKER_03 8:05

Exactly. I think there'll be a lot of groundwork setting this year. Yeah. Um, in hopes that we can make some real um real advances next year as far as legislation is concerned. Definitely.

SPEAKER_00 8:16

Well, one area that's I'm still today shocks in a happy way, but also shockingly way is that only a few years ago was something called the National Plan to End Parkinson's disease passed. And uh again, as an educator and historian of my own learning every day from people I meet, uh, to have just the first, you know, federal legislation unanimously passed, but only happened a few years ago. My mother, unfortunately, never was able to see that. I think she would have been really happy to see that uh, you know, finally our voices are being heard. But uh, you know, why do you feel just a year or two now, uh advocacy has become such a focus in the forefront, especially, you know, uh uh just past March when we all convened together. And I never will forget, even though it's been two times being in the Capitol, it's almost like you're in a movie and it's a happy, uh happy movie, but we want a happy ending uh to this story too.

SPEAKER_03 9:10

Yeah, that's right. We all want a happy ending. Um, you know, to your point, George, the um the National Parkinson's plan um legislation that was passed in 2024 really kind of got things kicked off. And um, that plan included the establishment of an advisory council at NIH, which, you know, we're still waiting for that advisory council to be seated. We're hopeful that um we'll hear something from uh the Department of Health and Human Services before the end of April uh regarding the seating of that um council. And the work associated with um that council will be critical as far as determining, you know, the appropriate um amount of research, uh investment that NIH should make in um Parkinson's disease um research, as well as evaluating and prioritizing um those things that the federal government through NIH as well as other agencies can do to improve the lives of people living with Parkinson's disease. And so that's one key piece of advocacy that we're really um focused on is making sure that that council gets seated, but also making sure that those deliverables are meaningful and um result in actionable um activities that can be pursued in the coming years.

SPEAKER_00 10:26

Thank you.

SPEAKER_03 10:27

Um the other um key component around um advocacy that has really gained some momentum is around existing NIH funding and the fact that it has been virtually flat um for the last five or six years. And um, you know, the concern there, of course, is that um without additional research funding, um, there, you know, are limited opportunities to um secure advances in um in disease management, but as well as um ultimately funding a cure. And so one of our key goals is to secure additional NIH funding, up to $600 million by 2028. And we know that there's a lot of pressure at the federal level, excuse me, to um reduce spending. Um, the last year uh the president introduced his budget with a 40% cut to NIH. Um, tomorrow we're expecting the 2027 budget from the president, which we are hearing rumors there'll be another cut to NIH of around 20%. And so um advocating and pushing back on those cuts, but also advocating for additional funding dollars for Parkinson's disease research will be critical moving forward. And so the the other side of that, of course, is the work that's happening at the state level with regard to research funding. I think a lot of states are recognizing that um the federal government is constrained in its ability to fund additional research. And so states are taking this on. And the Texas initiative that secured $3 billion in neurological disorders research last year was just kind of one uh initial um effort to do that. We're hopeful that to see other states following their footprint.

SPEAKER_00 12:08

I'll never forget the feeling asking Senator Rick Scott in Florida for the uh amount of money that we are in the definitely uh fascinating to be at that table and part of history. So thanks for all the efforts you're doing. Sure.

SPEAKER_01 12:20

And I think um before we jump into our next question, hopefully we'll see more, we'll see a little bit more of a snowball effect, right? As states do these types of things and allocate these funds and potentially ban paraquat and seeing the state level uh snowball effect, ideally.

SPEAKER_03 12:36

I agree. I'm hopeful that um, you know, other states will take a um, you know, a look at what's been done in Virginia around um, you know, pursuing a paraquat ban, even though that's kind of a foundational thing and think, oh, we could do this too, um, similar to the Texas initiative, which was successful. You know, that's one that other states can easily replicate. Definitely.

SPEAKER_01 12:58

Well, as we march through 2026, what would you say are really the pillars from the APA uh policy strategy? What would you say kind of you guys are focusing on as we continue down uh 2026?

SPEAKER_03 13:11

Sure. So um, you know, now that um the Parkinson's policy forum is behind us, so that was in March. You know, here we are in April. It's um Parkinson's Disease Awareness Month. And um, you know, we're gonna continue to focus on those advocacy priorities that we highlighted during the forum. That's the $600 million NIH investment in Parkinson's research, seating the National Parkinson's Policy Council, as well as banning Paraquat. Um, other activities that APDA is very focused on are um activities around um supporting caregivers, um caregiver um tax credits that may be, you know, of under consideration at the state level, but also at the federal level as well. Um we have um aligned ourselves with the team at AERP and are very supportive of the work that they're pursuing around on caregiver tax credits. Um we're also very focused on um coverage to um biomarkers testing. Um, this is something that we're collaborating with the American Cancer Society Cancer Action Network and other groups to ensure those coverage policies at the state level include biomarkers testing. So those are some of the key issues that we'll be focused on in the coming months. And then again, as part of Parkinson's Disease Awareness Month and the National Um Parkinson's Day programming on April the 7th, we'll be pushing out more information for uh individuals to continue their advocacy because sharing the individual's story is so important. And that's what really drives lawmakers to think about okay, this is a priority for my community and it's going to become a priority for me too. Thank you.

SPEAKER_00 14:54

Yeah. One area I really enjoy is being there, you know, live with other advocates. Also, people uh not that they want to be, because it's just, you know, we don't choose the path, but we are in a great and beautiful, inspiring community once we are together. We just had the optimism walk in Palm Beach. So it's again, I think it's memory seventh or eighth, which is scary because it's uh, you know, you turn around and remember when my mother was actually still with us. So she, I feel a memory lives on through the work of APD and everyone, uh, you know, Power Parkinson's and together for Sharon. The one thing that stands out at those events is community. How can uh our community and all communities throughout the country join with the APD and support some of the work you're doing and specifically in policy?

SPEAKER_03 15:38

So um it's a great question, uh, George. And, you know, supporting the um the advocacy work really starts with, you know, reaching out to your member of Congress or your local elected official. And that's something that APDA can help with. Um, one of the things I'd like to encourage um people living with Parkinson's disease to do is, you know, invite an elected official to a Rock City boxing class, invite them to a Parkinson's disease support group meeting. Um, these are opportunities for elected officials to not only meet with the community, but learn about Parkinson's disease and really understand how it impacts those living in their community. Um, Tip O'Neill once said that all politics is local. And so I think, you know, it it's such a good point that bringing everything to the local community is really where elected officials understand um what is top of mind for their constituents and recognize where there are opportunities for them to act on those top of mind issues.

SPEAKER_01 16:38

Thank you. Yeah, as we continue talking about how to energize uh folks around the nation, care partners, patients, et cetera, uh, what are some ways we can energize patients, care partners, and the community at large to really get involved in policy effort?

SPEAKER_03 16:55

So um definitely have them reach out to um APDA and we have a APDA advocacy um team that we're pulling together across the country. Um many of them will be based at the state level. And so we want to make sure that we have an opportunity to engage with advocates who are interested in reaching out to their state elected officials or federal officials. We can help them do that. We can help them identify those opportunities where there might be a way to invite an official to an event in the community, whether it's a um APDA optimism wonk or, like I mentioned, a support group or rock study boxing program. Um, the other thing that I wanted to um highlight, we've talked a lot about community, is um APDA has just recently produced a public service announcement. I don't know if you all saw it, it went live yesterday with the kickoff of um the Parkinson's Disease Awareness Month. And um that PSA, just sending that to an elected official and saying, hey, this is something that I live with, and sharing that PSA with them um can be really helpful. And um, as we've discussed earlier, it sets the foundation for educating people about what Parkinson's is and what it means for someone who's living with the disease every day. And that um PSA can be found on the um Parkinson's on the APDA website at um www.apdaparkinson.org backslash PSA. Thank you.

SPEAKER_00 18:26

Well, one thing that I thought as I was in DC two times, hopefully you'll be back again uh in the future was that the work didn't really just start there. It's when we got home, is when the real work began. And as Margaret and I can tell everyone listening, we a lot of this is behind the scenes that they don't, you know, people don't see and it's 24-7. And I just hope that the work uh continues even after this show concludes, it doesn't end until there's a cure. And just so grateful uh, you know, for your time, the entire APDA. We send our love and thanks. We're always supporting Power Over Parkinson's and Together for Sharon over the years. But uh as we wrap up, we always like to know uh what message of encouragement can you leave the Parkinson's community today in the terms of public policy?

SPEAKER_03 19:13

Um, so in terms of public policy, the message of um encouragement, um, every story matters. Every story is an opportunity to um move the needle on NIH research, move the needle on getting the advisory council um seated, um, move the needle on banning paraquat. It starts with your stories. Um, I never will forget the opportunity I had to work um early in my career with a patient advocacy organization. And one of the best patient advocates said, you know, our data, you know, the data around the numbers, you know, the number of people who have Parkinson's, the um 82 billion economic burden, the numbers make us very credible, but the stories make us memorable. So share your story because that's what's going to make Parkinson's memorable to elected officials, and that's what's going to make them and you know, act on those asks that we have of them.

SPEAKER_01 20:06

That's so well said. Thank you for sharing that.

SPEAKER_02 20:09

Thank you.

SPEAKER_00 20:11

I wanted to thank you for your time again, the APDA wanted to send the shirt out, Margaret, for any closing comments.

SPEAKER_01 20:17

Yeah, and we just wanted to thank you for sharing your time, your expertise, your passion, personally motivated as George and I are. Um, we can't thank you enough for um kind of leading the charge nationally along with some of the other organizations um across the nation to guide us and allow us all at the ground level to have the tools we need to to advocate, like you said, share our stories and move the needle. So thank you so much for being with us. Oh, it was my pleasure. It was great to see you all. And hopefully we'll see one another in person soon. Yeah, we would love that.

SPEAKER_00 20:50

Yeah, I want to thank both of you, of course, all the work that uh Power Over Parkinson's, especially Adam and the entire organization, and of course, AP Day and Anne. It's an honor to have said I met you twice now and hope for many more times to come and such inspiring work and really bringing important change, not just in Florida, Virginia, but countrywide. Also, I want to thank everyone listening. 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. From Washington, D.C., literally from the Capitol and beyond, we bring together senators, representatives, researchers, and advocates to amplify the voices, people living with Parkinson's and their families. Because again, as we wrap up today, everyone, no one's alone. We'll be out there fighting right by your side. We thank you. We love you, and we'll see you soon. Thanks, everyone.