The Paid Leave Podcast

How to Have More Good Days While facing Chronic Health Conditions

• The Connecticut Paid Leave Authority • Season 4 • Episode 13

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In this episode of The Paid Leave Podcast, the focus is on chronic health conditions and a national organization that can help people suffering across the country. Good Days founded National Chronic Disease Day, which is recognized every July 10th. The date reflects a key U.S. public health statistic: seven out of the top 10 leading causes of death in the United States are chronic diseases.

Host Nancy Barrow, spoke with Clorinda Walley, the CEO, of Good Days, a national nonprofit dedicated to helping patients overcome the financial and practical barriers to accessing lifesaving and life-changing care. With more than 26 years of experience in healthcare and over 15 years in strategic philanthropy, Clorinda leads the organization’s vision, operations, and patient-focused programs. Walley shares her personal journey with ulcerative colitis and psoriatic arthritis, including the emotional toll of managing her conditions and the importance of support systems. She discusses Good Days' programs, which provide financial assistance for copays, insurance premiums, travel, and diagnostic testing. Clorinda emphasizes the need for expanded access to care and paid leave programs, highlighting their benefits for patients and employers. She also reflects on the impact of Good Days' work, having provided over $40 million in assistance to Connecticut residents since 2008.

To find more information about Good Days please visit, https://mygooddays.org/  (mygooddays.org)

For More information or to apply for benefits visit, https://www.ctpaidleave.org/?language=en_US (ctpaidleave.org)

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Nancy Barrow:

Hello, Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut paid leave and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family, and workplace. Welcome to The Paid Leave Podcast. Clorinda Walley is the CEO of Good Days, a national nonprofit dedicated to helping patients overcome the financial and practical barriers to accessing life-saving and life-changing care/ With more than 26 years of experience in healthcare and over 15 years in strategic philanthropy, she leads the organization's visions and operations and the patient-focused programs. Under her leadership, Good Days has become one of the nation's leading patient assistant organizations, helping hundreds of 1000s of people each year access the treatments and support they need. Clorinda brings deep expertise in patient assistant programs, healthcare operations, and nonprofit management, and is a recognized advocate for improving access to care for people living with chronic and rare diseases. Clorinda and Good Days also founded National Chronic Disease Day, which is recognized every July 10, which is why the podcast is airing in July. And Clorinda, welcome to The Paid Leave Podcast.

Clorinda Walley:

Well, thank you so much for having me. I truly appreciate it.

Nancy Barrow:

Oh, Clorinda, it's so wonderful. I'm so honored to have you here. So, why don't you talk to me about your own personal health journey with your chronic health conditions.

Clorinda Walley:

Absolutely. So my health journey has was long, complicated, and deeply personal. Like many people living with chronic illness, one of the hardest parts was not just managing my conditions; it was getting answers. I knew something wasn't right, but it took time, persistence, and multiple doctor visits before I received a diagnosis that explained what I was experiencing. I was eventually diagnosed with ulcerative colitis and teropathic arthritis, and throughout that journey, it was frightening. But one particular thing changed me forever. Following a serious blood clots, I found myself confronting my own mortality in a way I never had before. I remember the doctor telling me to write letters to my three sons, which were one years old, three years old, and six years old. It was horrifying. I hope they would never have to read them, but at that moment, I wasn't thinking about my career or my responsibilities. I was thinking about my children, the milestones I hoped to see, and whether I would have the opportunity to continue to be their mother.

Nancy Barrow:

Wow, that is an incredible journey that you had for yourself. And writing those notes must have been terrible as a mother.

Clorinda Walley:

It is, especially you have a one-year-old, and I I don't know him yet, and so trying to deliver life messages in a letter, it was difficult and terrifying.

Nancy Barrow:

Yeah, I would imagine it would be. And how did you get the current role as president of Good Days?

Clorinda Walley:

So I spent the first 20 years of my career in pharmacy, beginning as a retail pharmacy technician before transitioning into specialty pharmacy. During that time, I witnessed firsthand the significant financial barriers many patients face when trying to access essential treatments. It was heartbreaking to see individuals diagnosed with conditions such as multiple multiple sclerosis walking away from life changing or life saving medications that they simply couldn't afford. So we were determined to find solutions for these patients. So we began researching charitable organizations across the country that could provide financial assistance, and that search led us to organizations like Good Days. These nonprofits serve as a critical safety net, helping 1000s of individuals access the treatments they need when costs would otherwise make it unattainable. So, after more than a decade working in specialty pharmacy, I reached out to the founder of Good Days to inquire about opportunities within the organization. So I joined in 2007 as senior director of operations. Later, moving on to executive director, and when the founder retired, I was honored to be elected by the board of directors to serve as president, a role in which I continue to advance our mission in improving access to care.

Nancy Barrow:

Well, it seems like such a perfect fit for you. You know,

Clorinda Walley:

it was it was perfect timing because that's that was the year that I started having all of these different symptoms without knowing what was taking place.

Nancy Barrow:

And how does Good Days help people with chronic health conditions? How do you do that?

Clorinda Walley:

So we start with just. Financial barriers that can can prevent people from accessing the care they need. Our mission is just to ensure that no one has to choose between their health and financial stability. We provide a range of patient assistance programs designed to help individuals afford critical healthcare expenses, including copay assistance to help cover out of pocket costs, health insurance premium assistance to help individuals maintain their insurance coverage. We also provide travel assistance for patients who need to travel to receive that specialized treatment and diagnostic testing. In addition to that, we work with several nonprofits across the country. So if there is not a program that we have that fits the need of the individuals we're trying to serve, we reach out and connect them.

Nancy Barrow:

I have a friend who has MS, and you mentioned that. You know, it is a hard diagnosis. It took a long time for them to diagnose her. They didn't know exactly what it was. So, did it take a long time to get your own diagnoses?

Clorinda Walley:

All of these autoimmune diseases, they have similar traits, and so you're you're going through all these specialists to try to determine what it is, because again, they can take on very similar. Like with multiple sclerosis, you you're having inflammation, you're having all these different things. Same with ulcerative colitis, Crohn's disease, rheumatoid arthritis. So they appear very similar, and it took me a while. I mean, I was literally with two blood clots, my fingers and toes curled in, trying to figure out what's going on before I really got the diagnosis and the treatments that I needed. Eventually, it being too late, having to have a colectomy.

Nancy Barrow:

You know everything that you've gone through. Tell me how your own experiences have made you a more thoughtful and empathetic leader of Good Days, because I'm sure it has helped.

Clorinda Walley:

It definitely changed. So you know, working in healthcare all of my life, I really believed I knew what people needed. Boy, was I wrong! My experience really profoundly shaped who I am, both personally and as a leader. So when patients share that they're scared, exhausted, frustrated, or still searching for answers, I understand that very personally. I know what it's like to live with uncertainty, to face challenges that others may not see, and wonder what your future holds. That perspective changed my commitment to helping people understanding the road they're going on, and really created a deep listener. Because as as you know, one shoe does not fit all, especially when you're looking at autoimmune diseases, and you know multiple sclerosis in one person can look different than the other, and so truly listening and understanding what the needs are for that individual really helps shape what we do here at Good Days to ensure that we're providing them what they need, not what we think they need.

Nancy Barrow:

Yeah, and autoimmune diseases affect women way more than it affects men.

Clorinda Walley:

Yes, and so for for me in my family, I have eight sisters, four brothers, and many of us with different forms of autoimmune disease. I have a sister with unspecified connective tissue, and what a lot of people don't understand is, with autoimmune, you don't just get one. All of a sudden, all all of these crazy things you've never heard of start happening, and so then that gets you into more specialists, more diagnosis, more treatment, more costs.

Nancy Barrow:

Yeah, and it's it's really incredible. Like the time that you have to spend away from work to get a diagnosis or get treatment, or it really can be challenging.

Clorinda Walley:

And not only challenging for the individual, challenging for everyone around you, your children, your your siblings, your marriage.

Nancy Barrow:

Yeah, how difficult is it for family members or caregivers to deal with someone that they love with a chronic health condition? Your family had to deal with that. Is it is it tough on a marriage?

Clorinda Walley:

Well, it definitely is tough on a marriage. Mine didn't survive mine. You know, one of the things I heard, and it wasn't from a place out of out of not loving. It was your burden, your disease is a burden, and it really was. I couldn't walk. I still showed up to work every day. I did everything I needed to do, but it was it was difficult. And if you don't have a strong support system, it makes it harder. So I asked my sister, one of them, to answer

this question:

like, what did it feel like for her? And she responded, "When you, when you, when you love somebody that's living with a chronic health condition, it doesn't just affect the person; it affects the entire family. Well, I was carrying the physical burden of the disease. My family members and caregivers were taking on the significant emotional and practical burden behind the scenes. They felt like they had to be the strong ones to stay positive, to provide reassurance, to continue to support and help manage daily responsibilities. And what caregivers caregivers often don't do is take care of themselves, so they're losing the perspective of self to try to help the person they love, which is which is very difficult. And especially with my siblings who also suffer from from chronic illness, it's it's a lot to take on as a caregiver.

Nancy Barrow:

It is, and caregivers, you know, mainly are women too.

Clorinda Walley:

Yes, and fortunate for me, I had a strong network of women to help. You know, they took on childcare responsibilities, picking up my children. I was in the hospital for many weeks at different times throughout this diagnosis, and you know, one thing I learned is caregivers need support too. And you know, while the focus is understandably on the person with the illness, family members are often often carrying the heaviest emotional load on their own.

Nancy Barrow:

You're absolutely right. And in your work, I know you've met 1000s of individuals and families. Is there a particular story that has stayed with you?

Clorinda Walley:

One specifically, and it was a lady named Josie. And I was there when she first came to Good Days seeking assistance, and I had the opportunity to be there at her bedside when she passed away. That, I can't tell you what a privilege it is to have the opportunity and the blessing to help so many people and to be a part of their stories. I'm still very close with her daughter, who I consider one of my sisters. It's just it's very meaningful, and the care that this organization has isn't just myself; it's all of the employees here who are becoming personally attached and involved in the day-to-day lives of many of the people we serve.

Nancy Barrow:

Yeah, I mean that's just a an incredible story. What advice would you give someone and their support system who might be at the beginning of that journey with a chronic health condition.

Clorinda Walley:

You know it's it's difficult, and you have to just remember that what was normal to you yesterday is not going to be normal, your normal in the future. And to take every day one step at a time, to understand that there's organizations out there that can help throughout. You're not alone, and I highly recommend talking to someone, to getting involved in in groups that have similar diagnosis as yourself to to get guidance, because again, you what a symptom you may have, you might not find readily available on on the internet. And sometimes just knowing that that's that's a normal occurrence to keep the fears away. But I certainly think that you know taking it one day at a time, being an advocate for yourself, and not being afraid to ask questions.

Nancy Barrow:

Yeah, you brought up something really important too. You said support groups. What about mental health and and finding your support network? You know your family around this because you really do need support, especially if you're on this terrifying journey and you don't get a diagnosis. I'm sure that really weighs on your mental health.

Clorinda Walley:

Oh, 100. You'll see many people like going throughout this transition who suffer from depression, and and you and loss of hope. So you know, I think the stronger mental health support you have, the greater your outcomes are going to be.

Nancy Barrow:

Yeah, yeah. And what are some of the biggest challenges that you faced when you started Good Days expanding the access to care for underserved patients, and and how do you overcome those?

Clorinda Walley:

I think one of the biggest challenges is expanding access to care for underserved people. Every day, organizations like Good Days hear from patients who need help affording life-saving and life-changing treatments, but there's simply not enough funding available to assist everyone who qualifies and needs support. So that is one of the most difficult realities of this work. No one wants to tell a patient that funding is unavailable when their health depends on receiving it. And unfortunately, as healthcare costs continue to rise and more patients struggle with affordability, the amount the the demand for assistance often outpaces the resources available. So the way we try to overcome those challenges is working with corporations, healthcare stakeholders, patient advocacy organizations, and policymakers to raise awareness of the growing need to secure additional resources. And as a charity, we also focus on operating efficiently and responsibly, so that every dollar entrusted to us can help as many people as possible.

Nancy Barrow:

Yeah, and you know some of these medicines are so expensive.

Clorinda Walley:

They are again, if you're looking at multiple sclerosis before insurance, it's five to $10,000 and if you have Medicare, oftentimes you're covering 20% of that cost. And you know that's the difference of maintaining a home and eating, or going into bankruptcy to try to cover these treatments.

Nancy Barrow:

Yeah, it's it's it's a it's a terrible place to be. You know, you're at a crossroads. So it's wonderful that there's organizations like yours that really can help with that financial aspect because that's the last thing you want to worry about when you when you're not feeling well when you're sick you don't want to think about that.

Clorinda Walley:

No, again, the hardest part is you have this journey of finally getting a diagnosis, and then the heartbreak when the life saving treatment is are out of reach. I mean, I don't know what is worse, knowing what's happening, knowing what you have, or knowing that there's something out there that is not attainable.

Nancy Barrow:

What do you wish that every person understood about the challenges facing people living with chronic illness today, especially like as you said, things are expensive.

Clorinda Walley:

It is. I think I wish more people understood that living with a chronic illness is often much more than managing symptoms and attending medical appointments. For many individuals, it's a daily reality that affects nearly every aspect of their life, from work and family responsibilities to relationships. We talked about mental health and future plans. I also wish that people understood that many chronic illnesses are invisible. Someone may look healthy on the outside while quietly managing pain, fatigue, or uncertainty, or complex treatment regimens that otherwise you would never see. And perhaps most importantly, I would recognize the incredible resilience of those living with chronic conditions. Every day, millions of people are diagnosed with with these diseases, and I think that for everyone to understand that you might not see the struggle that's taking place, but it is it is there. And even if you're just quietly sitting down and supporting them, I think that it's it's important. People believe that if you're ill, if you have a chronic diagnosis or a terminal diagnosis, you see it, which most cases it's not true. And so having to explain to someone, oh well, you look okay. When in reality, what you're going through, it's it's a mask. You're putting on a mask of happy to hide the turmoil that's going on inside.

Nancy Barrow:

Tell me how and why July 10th was created as Chronic Disease Day.

Clorinda Walley:

So that's a very good question, and it kind of goes along with some of the things that we've been talking about, and and the why of Chronic Disease Day. So Chronic Disease Day was established on July 10, and that was to bring awareness to seven out of the top 10 deaths in the United States are due to chronic disease. Many of which are preventable, and so that's 90% of the annual U.S. healthcare spending, and represents one of the nation's greatest public health challenges. While hundreds of 1000s of Americans live with chronic conditions that cannot be prevented require on ongoing access to care and treatment. Many of the deadliest and most costly chronic diseases can be reduced through prevention, early detection, healthier lifestyle choices, and so we recognize this need. And so the day was created to raise awareness, promote prevention, and advocate for improved access to healthcare. The initiative encourages individuals, communities, and organizations to take action to reduce the burden of preventable chronic diseases, while ensuring that those living with unpreventable chronic conditions and invisible illnesses receive the support and care they need. So we try to bring together patients, caregivers, healthcare providers, advocacy organizations, and industry leaders and policymakers, to elevate the conversation around chronic illness, improve access to care, and advance policies that lead to better health outcomes for all Americans. And again, so where where we have chronic disease day, this is something that people live with every day. You know, it's it's it's not a week or a month. It's it's it's daily living, and bringing awareness to the needs and the help that is needed to to help us as a country. because again, when people are sick, they can't work, and so there's there's all these all these connective things that'll take place that can make us a better country if we can focus on helping those who have need.

Nancy Barrow:

And that's sort of the intersection with Connecticut Paid Leave, right? It gives you up to 12 weeks of income replacement when you need to take time away from work for your own serious health condition or that of a loved one. And we help people with chronic health conditions if you have a flare-up or if you need surgery, like you were in the hospital, or you need mental health treatment and care from a professional. So we cover all these things, and we cover so much more. But we also offer block leave, where you can take the full 12 weeks if you needed surgery, or intermittent leave if you need to just go to doctor's appointments or get treatment, or a reduced schedule if you know you're going to be going to a support group and therapy every Wednesday afternoon. We have that flexibility there for the people in Connecticut all the workers in Connecticut how do you think a program like this could help the people that you serve at Good Days.

Clorinda Walley:

So I think state programs like Connecticut Paid Leave one demonstrate how thoughtful public policy can help individuals manage serious health conditions without having to choose between their health and their paycheck. For living for people living with chronic illness, access to paid leave can mean the difference between receiving timely treatment and delaying care because they can't afford it. Expanding programs like these across the country would provide millions of Americans with greater financial stability during some of the most challenging periods of their life. Whether somebody who's recovering from surgery, managing a disease flare-up, undergoing cancer treatment, addressing mental health condition, or caring for a loved one, paid leave would allow them to focus on their health and recovery without the added stress of lost income.

Nancy Barrow:

Yeah, and I, I think you know it is expanding. You know, we just had Virginia go, and there's discussion about New Mexico. So, you know, the chatter is that the majority of Americans really like these programs and really want a national program. I think that that's what's missing for us. So that the states that aren't covered don't have this. And you know, you can take your FMLA and you can get your job back, but you're not going to get any income replacement, and when you're facing a chronic health condition, which you said, like there's so many expenses and so many, you know, even just getting a diagnosis is tough. It can mean the difference between keeping your job or losing your job.

Clorinda Walley:

Truly, and I think that you know these programs also benefit employers and communities by helping people remain attached to the workforce, reducing financial hardship, and supporting healthier outcomes. And at the end of the day, access to paid leave is about dignity and security, ensuring that people can take care of themselves and their families when they need it most.

Nancy Barrow:

Yeah, it's it's wonderful for small businesses who want to be competitive and and keep and retain good quality workers too, you know they're they're very happy once they get that income replacement and they can take care of themselves or take care of a loved one, and that means a lot to an employee going back to that workforce saying, hey, they really took care of me.

Clorinda Walley:

Absolutely, and you know, again, you you provide a loyalty and and a and a stand and a standing employee who provides value and continue can continue to provide value if they have the support they need.

Nancy Barrow:

Yeah, I really hope that every state can have this. It's really a wonderful program. When you look back at your time with Good Days, Clorinda, what are you most proud of?

Clorinda Walley:

Let me think about this because again, we've done so much, and I think I'm most proud of the impact we've had on patients and families across the country. While I'm proud of the growth and the billions of dollars in assistance we provided, what matters most are the lives behind those numbers. Every grant represents a person who was able to access treatment, stay on therapy, focus on their health instead of worrying about how are they going to pay for care, and knowing that we've helped hundreds of 1000s of patients across overcome financial barriers and access the care they need is incredibly meaningful, and you know we're called Good Days because what we really want to do is help people have more good days.

Nancy Barrow:

I love that, and I know that you've helped people here in Connecticut because you've helped people in every state. You've helped hundreds of 1000s of people, so thank you for that. You know, giving some stability for some people in Connecticut who are going through that, we appreciate that because I know that your your reach is everywhere.

Clorinda Walley:

We do. We help across across the U.S. all all territories, but specifically for Connecticut, since 2008 we've provided as of yesterday, 38,201 grants, delivering more than 40- million in financial assistance to help people in Connecticut access and maintain critical healthcare services. including copay assistance, health insurance premium assistance, travel support for treatment related to expenses and diagnostic testing, I've been on the other side where I'm talking with people and they can't afford it, and it's it's heartbreaking for them to see them walk away knowing this could save their life. So I've been very blessed with the opportunity to be on the other side to say we can help.

Nancy Barrow:

Well, you're so amazing, and I just want to ask you how you're feeling today. How how are you feeling, Clorinda?

Clorinda Walley:

You know, thank you. I I've been very fortunate having had the colectomy. It really relieved the symptoms of the ulcerative colitis. And you know, as I said, autoimmune disease doesn't just come with one. But I've been very fortunate to to work at an organization that understands what these types of diseases can do and how it affects a person and sometimes their ability to effectively do their job. So you know, the support that I've received here, and you know, finally finding the providers that understood my my history and knowing how to treat me going forward has really kept me in a place of good health. So, thank you for asking.

Nancy Barrow:

Well, I'm I'm happy to hear that. I really am because the work you do is super important. So, we need you healthy. That's for sure. I want to thank my wonderful guest, Clorinda Walley for being a voice for chronic health conditions, and leading the charge, and for helping hundreds of 1000s of people each year access the treatment and support they need. So, thank you so much for your time and your expertise, and and for talking about your own personal journey and and for being a guest on The Paid Leave podcast, I really want to thank you.

Clorinda Walley:

Well, thank you again. And again, I think when we work together, the louder our voice becomes, and I think it will help the future with ensuring positive change.

Nancy Barrow:

Well, please check the podcast notes on how you can get in touch with Good Days, and for information or to apply for benefits, please go to ctpaidleave.org. This has been another edition of The Paid Leave podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow, and thanks for listening.

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