Advocacy 101: How Your Story Can Change Laws

Released Sept. 9, 2025

 

PODCAST OPEN: Thank you for tuning in to the Live Yes! With Arthritis podcast, produced as a public service by the Arthritis Foundation. You may have arthritis, but arthritis doesn’t have you. Here, you’ll get information, insights and tips you can trust — featuring volunteer hosts and guest experts who live with arthritis every day and have experience with the challenges it can bring. Their unique perspectives may help you — wherever you are in your arthritis journey. The Arthritis Foundation is committed to helping you live your best life through our wide-ranging programs, resources and services. Our podcast is made possible in part by the generous financial contributions of people like you. Now let’s listen in.

Cristina Schaefer: Hi, welcome to the Live Yes! With Arthritis podcast. I'm Cristina Schaefer, your host for this episode. I was diagnosed with rheumatoid arthritis about 20 years ago and have been living through the ups and downs of this disease ever since. I'm a longtime volunteer with the Arthritis Foundation, serving in roles at the national level and at the local level here in Houston, Texas. In today's episode, we're talking about arthritis advocacy.

The Arthritis Foundation's volunteer Advocates are vital to our mission. They work with lawmakers and policy shapers in Washington D.C., and across the country to ensure that all people living with arthritis have access to care and treatments so they can live their best lives with arthritis. The idea of going to Capitol Hill or to state capitals to talk to politicians and regulators can be intimidating to some people, though. Others would like to get involved for people living with arthritis, but they just don't know where to start.

So, today we're joined by Anna Hyde, VP of advocacy and access for the Arthritis Foundation, and Ambassador Deb Constien, who will talk about how to get involved and some of our Advocates’ current challenges and wins. Anna, can you tell us a little bit about yourself and what you do?

Anna Hyde: Hi everybody. So glad to be here again. My name is Anna Hyde. As Cristina said, I am the vice president of advocacy and access at the Arthritis Foundation. I've been here 11 years now and have been working with wonderful volunteers like Deb that entire time. So really, what I do is take the challenges that we hear patients have, accessing their health care, affording their health care, with research into cures, and the funding that's required to get there, and translate that into what I hope to be change through policymakers.

We have been successful in passing many laws at both the federal and the state level, but it also involves other stakeholders. We're working with other patient groups, working with health care providers. We're working with pharmaceutical companies. We work directly with insurance companies to influence them. All of those things are under the umbrella of advocacy, but we do it all with patients like Deb. It is their patient stories and their voice that really fuels what we do.

Cristina Schaefer: And how did you get involved in advocacy?

Anna Hyde: I got involved in advocacy through actually my graduate program. I studied political science in graduate school here in Washington, D.C. And through that program, I was lucky enough to do a health policy fellowship. And health policy was not on my radar before that. But I quickly grew to love it. I worked for two members of Congress during the sort of lead-up to the Affordable Care Act days. So, it was a really exciting time to be in health care policy. And when I started working in this space, I worked with health care providers, and that was wonderful. But when I came over to the patient side, that's where I really felt home. The very first day that I came to the Arthritis Foundation, I felt instantly at home in patient advocacy.

Cristina Schaefer: What about you, Deb? Can you tell us a little bit about yourself and how you got involved with advocacy?

Deb Constien: Sure. I was diagnosed at the age of 13 with rheumatoid arthritis. So, 43 years ago, long time. Advocacy I avoided for a good long time. I thought you had to be political. And I literally thought that you had to choose a side. So, I was overjoyed to hear that it had nothing to do with politics, truly. When you're talking to legislators, you're not there as a Republican or a Democrat. You're there as a patient. And you're telling your story that way. So, once I learned that I could actually just have a voice and use my 43 years of experiences, as far as fueling what I was talking about to legislators and why certain things were a problem and how it has affected me personally, because all of our priorities, I've literally had experiences in almost every one of them.

Cristina Schaefer: What exactly does advocacy mean and what is its purpose?

Anna Hyde: Advocacy can mean almost anything. And I'll give an example that we always give the children during JA Family Summit, because I feel like it's applicable to anyone, which is: You know, we always ask, "How many of you have ever asked your parents and tried to make the case that you should be able to eat ice cream before dinner?" Or something like that, right? You really pushed for something that you wanted, regardless of what that thing was. And your parent might have said no. And then what did you do? Did you accept no for an answer? Or did you try to make your case? "I have a five-point plan for why I should be able to have ice cream before dinner." You were doing advocacy; you were advocating for yourself. Obviously, the sort of issues that we advocate for are much more complex than ice cream, but nonetheless, the same principle applies. It's really just using your story and making a case for why change should happen.

Cristina Schaefer: So, what is the difference between advocacy and lobbying?

Anna Hyde: I have two completely different answers for this question. (laughter) One is that it's a distinction without a difference. I use the term lobbying and advocacy interchangeably all the time, both professionally and personally. However, there is a difference, I think, when we're talking about what I do as a staff member, versus what volunteers like Deb do as an Advocate. I am a registered lobbyist for the federal government. That gives me license to go to Capitol Hill and to lobby for specific pieces of legislation, which I do. So that's lobbying.

Now, Deb could go to the Hill and say, "I lobbied my member of Congress today." And that would be completely accurate. But she's more likely to say, "I am an Advocate. I am advocating for change. I am advocating for better access to care." As opposed to, "I am lobbying for better access to care." I feel like advocacy or saying advocating versus lobbying is just a little bit broader and more comfortable for the average person, but truly you can use those terms interchangeably.

Cristina Schaefer: Why does lobbying have a bad reputation, Anna?

Anna Hyde: I could write a book, because not everybody is a good actor. There are many different types of lobbyists and different types of ways that people lobby. I think a lot of people think of, you know… The D.C. Swamp is a term that gets thrown around a lot, or K Street, which has kind of a negative connotation to it. And people think about just influence peddling, and you're taking lots of money, and you're giving it to candidates and politicians, and in exchange you're expecting them to support a particular issue. And unfortunately, that does happen. And there are lobbyists as well who really go outside the lines. There have been many examples of ethics standards and laws that have had to be passed in order to kind of tamp down on those kinds of things.

So, there have been examples that have given lobbying a bad name. But how I defend it is that there are all of us in the kind of nonprofit space, in the patient sector, where lobbying looks very different. I mean, the fundamentals are the same in that you are engaging and building relationships with policymakers in order to kind of push a particular issue. So, that's the same. What's different is that our constituents are patients. They're not corporations. We don't have a political action committee where we're giving money and getting face time with members of Congress as a result of that, or anything like that. I sort of think about it that way as a major difference.

Cristina Schaefer: In Deb's introduction, she mentioned that, you know, she didn't have much experience with politics, and that kind of made her stay away from advocacy for a while. Clearly, you don't have to have a poli sci degree to be an Advocate, right? But does some passion for politics help in this scenario when you're working with legislators? Or does it really not matter?

Anna Hyde: I don't think it matters at all. And maybe I'll just kind of tee it up, and then Deb, I think you are the best person to really answer the question given your background. But just from where I sit, I don't think it matters at all. Now, if you happen to have an interest in politics, and you follow politics and policy and what's going on with Congress, and you follow the elections, and you have a sense of, you know, “My state has a majority this House and majority that Senate,” and you're getting into that way from a strategy perspective, it can be helpful to know. Those things can be helpful; absolutely not necessary. The only thing you need to have a passion for is making change and telling your story.

Deb Constien: 100% agree with that. You just need to be a patient, and you need to have a story to tell. And usually there are lots of hiccups that patients go through throughout their lifetime. And it's challenging when you're spending hours on the phone trying to talk to insurance companies, trying to get prior authorizations. All these topics we'll probably cover a little bit more in a little bit. You just need to be a patient.

And usually everything that we're talking about I've had hiccups with, and it's caused disruption in my life, my husband's life, my family's life — and expressing the need to your legislator. And that's where the Arthritis Foundation is like rock stars in everybody that works for Anna that we touch. And they write out everything for you. They listen to you as a patient, and they empower you to tell your story and help you tell your story in a short, succinct way. The Arthritis Foundation makes it very easy to advocate.

Cristina Schaefer: And I would imagine, Anna, the same goes for caregivers. Or are caregivers really strong Advocates as well in front of these legislators?

Anna Hyde: Absolutely. And I personally think that the caregiver example is underutilized a lot of times. There's often, and rightly so, an emphasis on the patient experience. But there are ways in which the caregiver experience is really helpful. One of the things that I tell people who are either interested in becoming Advocates, or who are Advocates but want to figure out how to contribute more — and maybe they're intimidated or don't have the time to take their story to their legislator — is that you don't need to do that. All you need to do is tell me your story and let me take your story to the Hill.

And one of the ones that I use often: A national advocacy committee member was speaking about her experience advocating for herself with her health care provider. I use the story for policymakers because it's really important for showing why it's often important for a caregiver to be present with a patient. In this case, she was talking about how she goes into the provider's office. Cristina, I don't know if you've had any experience with this, and Deb as well, but your doctor asks you, "How are you doing today? How's everything going?" "I'm doing great." Well, her husband was sitting there with her and said, "Two days ago you couldn't get out of bed, so maybe you're doing great right now, but that is not reflective of how you've been over the past few weeks." And so for her, having her husband as a caregiver with her, to help keep her honest and help to keep a real accurate sense of her health status with her provider.

I use that example all of the time because I think it's so important for policymakers who work on these kinds of issues to hear that. They need to hear that human element and why it's so important to think about what data looks like, and how accurate it may or may not be, depending on who's contributing to it.

Deb Constien: I can speak to that because my 26-year-old son has been diagnosed with rheumatoid arthritis at this point, and it's been already close to two years. And luckily, my son lets me come to his rheumatology appointments because I know the jargon. I know what the doctor's asking, and truly my son doesn't. And it's funny because I also know his rheumatologist, and his rheumatologist will look at me, and I'll try to tee up my son of what he's truly asking and to give the true sense of how uncomfortable things are.

PROMO: Don’t face arthritis alone. The Arthritis Foundation’s Helpline is a valuable resource to get answers to your questions about arthritis. You can also get referrals to a variety of resources tailored to your specific needs. Our friendly Helpline team offers guidance and information to help you navigate your unique arthritis journey. Call 800-283-7800. Or look for the chat button online at arthritis.org/helpline.

Cristina Schaefer: So, if I'd like to get involved with arthritis advocacy, but do not know where to start, what would you recommend?

Deb Constien: I've actually had that experience already. I will post things online on Facebook and talk about Hill days, or days that I've gone and spoken to Congress. I've testified at the state level and done press conferences. People will come to me that I didn't know was diagnosed with arthritis, and ask me, “How do I get involved in that?” And “How much time does it take?” So usually what I'll do is, I'll share their contact information with Ayesha, one of the people that works with Anna, and have her contact and say, “Hey, these are the basic levels of where you can start. You can be an Advocate, so we'll send you action alerts, and you just fill out your name, your address and your email address, and then it'll shoot off things, messages, to legislators.” So, as basic as that, or actually doing a little bit more, testifying in front of Congress and things like that. There's a lot of applications that can happen. And Anna can speak more to that.

Anna Hyde: We actually have a brand new resource that we've rolled out based on feedback from Advocates who really just didn't feel like they knew what to do next. They needed more of a roadmap. And we thought, you know what's missing from our repertoire of resources is a very tactical how-to guide. So, you've signed up to be an Advocate. Now what? Number one, use our legislator lookup tool and find out who your members of Congress are. Number two, contribute your story to a story bank. Number three and so forth and so on. So, and it's chunked by kind of ease and like a natural kind of pathway for getting embedded into advocacy. It's kind of a 101 level. As Deb said, there are multiple levels of advocacy. So, you can start by just signing up to be an Advocate. There's lots of information on the website about what an Advocate is and how to do that.

You get our newsletter once a month, and it always has an action opportunity, like Deb said. It could be as simple as just filling in your name and address and hitting send, or you can customize it, really, truly putting your story into it, getting to know your member of Congress, finding out who their health staff are and sending letters directly to them. So, it really is just a matter of your comfort level. We have Ambassadors where we give specific assignments, and they get special newsletters with other things that they can be doing around advocacy. And then our highest level is Platinum Ambassador, of which Deb is one. Those are our top Advocates who have completed all of our Ambassador assignments and a number of bonus assignments. And as a result of that, they get special access to subject matter expert webinars. They get early-bird registration for our Advocacy Summit, which happens to be coming up in September, and a host of other things. It's a nice little club to be part of.

Importantly, we have a Junior Ambassador program, so we're really trying to help our kids with arthritis to become Advocates young. 13 to 17 years old is the age range for that. They also get a monthly newsletter. It has lots of opportunities for them to connect with each other and to practice advocacy in return. They're not only getting civic engagement, but we also write letters of recommendation for college applications and things like that. But one of the things that's so important about that speaks to what Deb was just saying about her son: For many parents who are helping their kiddos with arthritis navigate those teenage years and preparing them for becoming adults and having to do this on their own, it starts early, right?

You want your kid to feel comfortable advocating for themselves with their health care provider. To know what to do if they feel like they're not being served by their provider and may need to find someone new or get a second opinion — to not be afraid to ask questions and to challenge their provider if they feel like a treatment decision is being made that they're not comfortable with, right? That's all part of advocacy. So, that's a program that we really have grown a lot in the last few years. And we're going to continue to focus on that age group into young adulthood and helping with those transitions of learning the language of insurance coverage and all of those things that are really hard to navigate when you're also trying to navigate becoming an adult.

Cristina Schaefer: If I'm a patient or caregiver who really wants a better health care system, what can I do to make that happen?

Deb Constien: I think as far as that goes, it is finding your voice. And the first time I testified on behalf of step therapy in Wisconsin, which is where I live, I was really intimidated. But after doing it, it just became secondhand. And again, it's just going to your legislator and telling your story, talking about exactly what is important to them and why it's important to me, and what changes I would like them to step up on my behalf to explain. Learning more about situations that might have happened in your own life, but you don't know what it's called.

And it might be all copays count or step therapy or prior authorization, all these terms that are out there that they… They don't know if they've been affected by, because they don't understand the content. And that checklist that Anna was talking about, it’s that direct link that you can click on, so you can learn more about that one piece. Like here, this is what our website says, take a look around. And you click on the website, and it brings you right to that page and walks you through everything you could ever want to know about advocacy.

Anna Hyde: I would also just add onto that that small change is good. It doesn't have to be the big radical “I fixed the entire health care system.” We would all love to do that. I feel like if you can make a small change, if you can convince one person to adopt kind of your issue, then you have made really good progress. It takes a long time to make real change happen. And you know, it took us 10 years to get the pediatric subspecialty loan repayment program funded. It took us nine years to get the Department of Defense Arthritis Research Program passed into law.

It can take a lot of time, but it's one co-sponsor at a time, one supporter at a time, and you just build on that success time after time after time. We're about to send our Advocates who come for Advocacy Summit back to the Hill on the Safe Step Act. It'll be the third time they've gone to the Hill asking for support for that piece of legislation. But in my mind, that legislation was only introduced a few years ago. It's like a teenager now, right? We still probably have a few more years before it gets to that point, where it can actually be passed into law. We're still building support, and that's sort of the critical element for any new Advocate to sort of keep in mind.

Deb Constien: As far as even the Safe Step Act, here in Wisconsin at the state level, we've already signed it into law, but it's happened with a good handful of states. The state bill has already passed. I go into the offices and I say thank you to my representative and to my senators because they have supported it.

PROMO: As an Arthritis Foundation Advocate, you can help raise awareness about the unique challenges people with arthritis face. Advocates play a vital role in influencing policy changes that promote better health care options and reduce barriers to treatment. Help ensure that everyone with arthritis receives the care and support they need to live their best life. Sign up at arthritis.org/advocate.

Cristina Schaefer: How could I find out about the issues that affect me and others with arthritis?

Anna Hyde: We have a wealth of resources on our website: arthritis.org/advocate. There's a hub for issue briefs where you can learn more about the specific issues Deb was talking about: prior authorization, step therapy, affordability issues, biomarker access, things like that. We also have a hub for action alerts. If you want to learn more about what open-action campaigns we have. We have a story bank if you want to lend your story. And we have an entire video training library. Everything from advocacy 101 to specific training videos doing deep dives into some of these issues. And if all else fails, you can also reach out to me directly. I love to serve as a resource for patients, whether it's a link on our website that I can send or another sort of research paper or article or something that I read recently that is really relevant to the issue at hand. I love being able to share those things with our Advocates.

Cristina Schaefer: How do I know whether to focus on my state or on federal issues?

Anna Hyde: I can start this, and then Deb, you can talk about your experience perhaps at the state level. The initial answer is both. There's always the need to do work at the federal level. I would say that's always true. At the state level it really depends. Not every state is in every session. So, for example, Texas, where you live, Cristina, it was in session this year, and it was a state we definitely focused on, and on a few different issues there. It's not in session next year, so it may not be as much of a focus state. There's always a need though to stay connected to and to educate lawmakers about what's happening with your arthritis and just with the general kind of state-of-the-issues that we are talking about every day.

So, even if your state's not in session, if you've had a contact point or built a relationship with your policymakers in the state, there's still always an opportunity to engage. However, if you want to know if your state is a really priority state for us from a legislative standpoint, we have a team that will send action alerts. As long as you're signed up for an Advocate, you're going to get those action alerts, and they will be state-specific. So that's one of the ways that you'll know. The other thing that you could consider doing is joining the state advocacy committee in your state. We don't have one in every single state, but I would say about three-quarters of them at this point we do. So, chances are there is someone that you can connect in with. And if you're a member of the state advocacy committee, you're going to get a lot more emails and a lot more sort of dynamic opportunities to engage and to shape how you actually advocate in the state for those legislative priorities.

Deb Constien: And to build on what Anna has said, I'm also part of a coalition in Wisconsin that I attend, and I report back to the Arthritis Foundation on what is going on with our priorities. Because right now we're in our third year of working on All Copays Count. So again, things don't happen quickly all the time, but two issues that we have gotten across the finish line in Wisconsin is: the Safe Step Act and the Biosimilars. Those are two that I testified on behalf of in the Senate as well as the House. And I also have been participating in press conferences and sharing my story that way.

Cristina Schaefer: Let's say I work full-time or go to school full-time, maybe have a family and other responsibilities. So, I don't have much time to be involved, but it's still important to me. What can I do?

Deb Constien: I think just signing up to be an Advocate. You get those emails for action alerts that are happening. And they are those instant ones that you can just put your name to, your email address and your address and shoot; you hit send and off it goes. But you can also, like Anna said earlier, personalize them with a story that pertains to you and your life and make it a little bit more powerful. So, those are some easy ways of doing that, that aren't as time-consuming as being a Platinum Ambassador or an Ambassador.

Cristina Schaefer: Some might worry that maybe signing a letter or signing their name on something, it might come back to bite them. You sometimes hear about doxing and other kinds of retaliation. Is that something that you two worry about? And how do you protect yourself?

Anna Hyde: I completely understand that concern and particularly for Advocates who are in certain fields, like you may work in politics yourself, or you may work in a nonpartisan organization, or you may work for government and you want to be really careful about how you publicly conduct things like advocacy for an organization, like the Arthritis Foundation. I think there are a lot of different ways that you can get around that. One thing is: You are the constituent, and something that we always coach Advocates on before they go to Congress to talk to their members of Congress is that you elect them, which means that you are their boss, not the other way around. And we want you to always feel comfortable telling your story and feeling empowered to share the challenges that you're having. We make sure that every single thing that we support and that we ask patients to support is bipartisan.

We're not going to send people to the Hill to talk about something that's completely left leaning or completely right leaning. We always want to be in the middle. We're not going to ever ask you to go to the Hill to talk about something that's controversial. The second thing is, even if you still don't want to engage and put your name to something, there are other ways that you can lend your voice. You can complete the story bank on our website. That only goes to us. And if you have a really compelling story around an issue that we're actively talking to members of Congress about, we may ask you, “Hey, can we use your story?” It can be completely anonymous. We will always ask you first before we use it. So, that's another way to just lend your voice to an issue without being out front. But Deb, have you ever had a concern or discomfort talking about a particular issue or putting your name next to something that you've talked to a legislator about? Have you ever had an uncomfortable conversation like that?

Deb Constein: I really haven't. The one that does come to mind, but I wasn’t uncomfortable talking about it, was: I was paired up and went to a different representative that was not mine. And we were talking about biologic medications. So, medications that are given by pen injectors or IVs, those type of things. The representative said, "Well, I've got sore knees, can I have that medicine, too?" And I went on to explain a little deeper and a little bit more simplistic what biologic medications are and the differences between osteoarthritis and inflammatory arthritis. I found that being a really interesting point from the representative, thinking, I mean: They're not always super educated either and they don't know what the medications that we take are. It was eye-opening to me more than anything.

Cristina Schaefer: And I'm sure eye-opening for that legislator as well, which by definition counts as a win. Let's talk about wins. Can you talk about some of the issues the Arthritis Foundation advocacy team has won and how you accomplish them?

Anna Hyde: I'd love to hear Deb talk about her experience in Wisconsin and getting the step therapy bill passed and kind of what steps led to that. But at the federal level, an example that I love, because it's fairly recent and very impactful, is getting the pediatric subspecialty loan repayment program funded. This was a program that was passed as part of the Affordable Care Act in 2010. And it took us over a decade to get it actually funded because it was one of many programs that were authorized but not funded. We had this critical window of time right after COVID when that program was reauthorized as part of one of the COVID relief bills. And we knew if we don't get this thing funded next year, we're going to lose that momentum. And so, what we did was: We brought together a group of patients and providers.

So, we had pediatric sub-specialists and patients across specialties, and we paired them up to do Hill visits virtually because it was still during COVID. And I was lucky enough to attend some of those. And I could really see the light bulb moments happen with the staff of the members of Congress. And these were mostly appropriators who are in charge of making those funding decisions. And lo and behold, when that next year's funding bill was released, it was funded for the first time. That was one of the most exciting wins that I've ever experienced. There are many more that, you know, we have had, and certainly at the state level we've had over 150 wins across all of our issue areas over the past 10-plus years. But that's one at the federal level I like to highlight because I truly believe that that sort of intersection between the patients and the providers talking about their experience and the need really made the difference.

Deb Constien: I happened to be on those calls as well. And one particular call that stood out to me was: I was teamed up with a pediatric gastroenterologist. So, this doctor dealt with kids with gut issues and stomach and their intestines and things like that. And he went on his phone live on the thing and brought up what his debt loans were, which were like mind-boggling as far as still what he owed. And he had already been out practicing for probably four years, and he still owed, if I'm remembering correctly, $300,000. And the lawmaker was visibly shook by that, and it was, I agree that was quite the moment.

But going back to some of the successes that we've had in Wisconsin, were both on the biosimilars and the step therapy, and being able to testify with my story, and lawmakers asking me questions on the spot, that was something. And that was empowering because they didn't ask me anything I didn't know. And the questions just proved the point even more how much of a problem it was. I went to both bill signings and that was also moments that I'll never forget. I still have the pens from both of our governors. So, it was great. Just magical moments for me and empowering moments.

Cristina Schaefer: What about some of the current challenges? What issues are you focusing on right now at the state and federal levels?

Anna Hyde: Our biggest challenge right now is how to think about the needs of people with chronic diseases like arthritis that can be high-cost diseases in terms of the medications, in a time when both federal and state budgets are really crunched. We know at the state level that we're facing, you know, cuts to Medicaid, expiring tax credits for the Affordable Care Act, health plans and other things like that that now governors and regulators and state legislators are having to grapple with. We just came off of a state legislative conference. Common theme: People are trying to figure out how to manage tightening budgets with rising health care costs. So, that's kind of a macro level challenge that I anticipate really dominating the conversation in the next couple of years.

I think for us, the kind of little in incremental things that we would really like to drive forward are solutions to that and really talking about making sure that patients have early diagnosis, access to medications quickly, in order to avoid some of the long-term costs like needing joint replacements or, you know, having worsening joint damage or things that can cost more down the road.

We know that comorbid conditions like diabetes and heart disease are very common as well. There are a lot of things that can be done in the health care system now to prevent some of those long-term costs. So, it's sort of like, OK, I see your budget crunch; let me tell you some ways that you can better take care of patients to save money down the road. It's a tough sell to make oftentimes because policymakers often think in short-term budget windows, as do other stakeholders that we work with, like companies. So, it's a challenge, but also an opportunity, and something that I personally will be very focused on over the next couple of years is trying to make those incremental wins.

Cristina Schaefer: If I'm just starting out in the advocacy space, what can I do to help?

Anna Hyde: The most important thing that you can do to help to start out is just to share your story. And it could be through that story bank that I've mentioned a few times. It could be through direct conversation with a member of my team, joining one of our advocacy webinars and lending your experience that way. We also send out surveys fairly regularly to better understand the challenges people are dealing with. Every other year we do an advocate priority survey where we ask: What are your top arthritis-related challenges? What are your top care-related challenges? And it gives you an opportunity to tell us “prior authorization is really my biggest challenge,” or “the cost of my medication has gone up a lot, and that's my biggest challenge right now.” And we're able to use those data points to make our case.

We also do focus groups as well, which is a way to really deep dive. Deb has participated in several of those, and it really gives us a good snapshot of what you're dealing with. Those are the impactful stories that allow me to do my job as best as I can. So, that's the single most important thing that you can do as a new Advocate, to just lend your story and be part of the change.

PROMO: A gift to the Arthritis Foundation helps fund vital research aimed at finding new treatments and conquering arthritis. Your contribution also supports education, resources and community events for those affected by this complex condition. Every donation plays a crucial role in improving the quality of life for millions of adults and children in the U.S. Donate today at arthritis.org/donate.

Cristina Schaefer: For every episode, we ask a question and include some of the responses from our followers on social media. So, for this episode, we asked: “If you’ve ever done any advocacy work, what was the most rewarding win that you had?” I'm going to read a couple of the responses that we got, and I'd love to hear your thoughts if you want to weigh in. The first one came in from Chris Kraus Coaching. “From living with arthritis to speaking up for it, every win is proof that our stories have power. Keep telling your story. You never know who needs to hear it.”

Deb Constien: Powerful, yes. You know, you never know who else needs to hear what I'm saying? Or it will encourage another person, “Hey, that person spoke up, why can't I? Or why shouldn't I?”

Anna Hyde: 100% agree.

Cristina Schaefer: The next one came from Zach, the arthritis coach. Zach stated, “The most rewarding moment that I've been lucky enough to be a part of is having a young girl, who was told she might never walk the same, go from feeling small, broken and sad, to squatting over 100 pounds, moving better, feeling better and become happier than ever. Sometimes giving someone self-belief is all that is needed for a huge turnaround.”

Deb Constien: Again, super powerful. I mean, just seeing from the person who could barely walk, to squatting 120 pounds. I can say that I wouldn't be able to do that, but you know, you have to believe in yourself. And if somebody else believes in you… I know my husband is my partner in crime. I do have a really good outlook about my arthritis, but sometimes I do have my little pity party, and he'll pick me up and help brush me off, and he'll just say, “Just be blessed with what you can do.” And I'm like, that's a really good perspective. So, agreed. That's the same type of thing that person did.

Cristina Schaefer: Finally, we wrap up each episode with our top takeaways from the discussion. For me, just one big one off the top I'd love to share, just as a longtime volunteer who's served in many different roles with varying time commitments: Advocacy really seems to be one place that anyone can get involved, no matter how much or how little time you have to give. Deb, what are your top takeaways for this episode?

Deb Constien: I would piggyback off of that, and that the Arthritis Foundation has done the hard work and helps prepare the Advocate be prepared for any of these situations, helps empower them and provides them with the wording in emails if it was an email, or if you are presenting on something, that they give you the confidence and the material to feel powerful to go forward.

Anna Hyde: I would just say that your story is more powerful than you know, in fueling what we do. And there are ways that you can share it, both big and small. It doesn't have to be a big barrier to entry.

Cristina Schaefer: Well, thank you both for your time today. I hope that anyone who's listening to this really takes away that this is a great place to get involved. And your story matters.

Anna Hyde: Thank you for having us.

Deb Constein: Appreciate it.

Cristina Schaefer: That's it for this episode of the Live Yes! With Arthritis podcast. For more arthritis resources, educational opportunities, information about advocacy efforts in your area and more, visit arthritis.org.

PODCAST CLOSE: Thank you for listening to the Live Yes! With Arthritis podcast, produced as a public service by the Arthritis Foundation. Get show notes and other episode details at arthritis.org/podcast. Review, rate and recommend us wherever you get your podcasts, on Apple, Spotify and other platforms. This podcast and other life-changing Arthritis Foundation programs, resources and services are made possible in part by generous donors like you. Consider making a gift to support our work at arthritis.org/donate. We appreciate you listening. And please join us again!