Keyla Caba is a patient advocate who lives with Crohn’s disease and ulcerative colitis. Her son was also recently diagnosed with a chronic disease, and she shares the challenges of being both a patient and a caregiver, mental health, and affording high copays for the care she needs.
In this special episode, Kate Pecora shares her conversation with Keyla, recorded live at the We the Patients Fly-In in Washington, D.C. Hear what led Keyla into patient advocacy and how she fights for the needs of the chronic disease community.
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
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Keyla Caba (6s):
When you have a chronic illness, or anything that you're struggling with in life, mental health is such a huge part of it. If it's not okay, you can't be okay.
Dr. Bob Goldberg (19s):
Welcome to The Patients Rising Podcast. This is Dr. Bob Goldberg, going solo for today's episode, while my cohost, Patients Rising Executive Director, Terry Wilcox, is out this week on a much-deserved vacation. Today, we continue our coverage from the Patients Rising Now, We the Patients Fly-In, which took place on June 14th and 15th. During those two days, patient advocates from the chronic disease community, met in Washington DC to speak with lawmakers about healthcare policies to improve access to care. During the Fly-In, Field Correspondent, Kate Pecora, sat down with participants to hear their stories.
Dr. Bob Goldberg (60s):
Today, we bring you her conversation with Keyla Caba, who lives with Crohn's disease and ulcerative colitis. On top of managing her own care, her twelve-year-old son, was also recently diagnosed with ulcerative colitis. Kate spoke with Keyla about the healthcare challenges facing her family and why she decided to become an advocate. Here's their conversation, live, from We the Patients Fly-In.
Kate Pecora (1m 27s):
Today, I'm talking with Keyla Caba. Keyla is living with Crohns disease. She also has a son who has IBD and colitis. Great to talk with you, Keyla. I know we're going to go through your journey experiencing Crohn's and also your son's journey. Could you talk to me a bit about yourself first and whatever you want to share with folks?
Keyla Caba (1m 45s):
Yes. So, my name is Keyla. I am 37 and I have Crohn's disease. Recently, I was diagnosed with Crohn's, about two-years-ago, and then ulcerative colitis for ten years.
Kate Pecora (2m 1s):
Your son, I know he is also living with IBT. Talk to me about that. Is that something you've worked into your life and your family situation? It's hard to have one person with a chronic illness in a family, but I think it's just as difficult to have two.
Keyla Caba (2m 16s):
Yes, especially because I also have a permanent ileostomy bag and it was just made permanent about seven months ago. So, very recently having had surgery, recovering, and then at the same time, our family gets the diagnosis of our twelve-year-old with ulcerative colitis. At first, I would say it was definitely difficult. It was hard for him to hear it, especially after everything he's seen me go through, but then he switched it and has seen so much that I have done, and achieved, while having it. I think having it was difficult to navigate, but it also has been a light for him to see that he can achieve and do anything.
Kate Pecora (2m 60s):
Right. That there's a life beyond this kind of diagnosis and living with conditions, that ultimately, have to be managed every single day. It becomes a piece of your life after a while. I agree with you there. Talk to me about - I know you're an advocate for Crohn's, in general, so I want to talk about that mental health piece. I think you brought it up a bit within that transition phase between a temporary ileostomy to a permanent one. Was that challenging for you when you went through that process? Also, with your son seeing that you were diagnosed much later in life, seeing him living with it at a very early age, how was that?
Keyla Caba (3m 40s):
It's definitely difficult. Mental health is something I absolutely talk about so much, because when you have a chronic illness, or anything that you're struggling with in life, mental health is such a huge part of it. If it's not okay, you can't be okay. How can you help others if you're not okay? I definitely made it a priority, that my mental health be okay, in order to be able to help my son. Everything that I've done, he has sort of incorporated into his treatment. I think that has also really helped him. I'm very big on holistic medication and treatments and he's very open to that as well.
Keyla Caba (4m 24s):
My biggest fear was always for him to have it, so at a young age, he's always been a really clean and healthy eater. I kind of paved the way for him by having him have a clean diet already.
Kate Pecora (4m 39s):
I know that your findings, and your learnings today, have impacted his life. I want to get into that. What got you to the point where you are today? What taught you, what you already know, and how to be an advocate? I understand you've had as many people as possible, with Crohn's, do some challenges with things like copay accumulators and Step Therapy. I want to talk about both of those pieces, maybe starting out with the Step Therapy piece and why it has been a challenge to finding and being able to stay on the right and stable treatment.
Keyla Caba (5m 11s):
I would say I went through my journey by myself. I didn't want anybody to go through the same thing as me. I felt so alone. It is difficult to talk about the bathroom issues to anybody, and having come from parents who are immigrants, and have English as a second language, there is a very huge language barrier with me not understanding my condition. It took me some time to be able to understand it, learn, and navigate it. Even when it came to copay accumulator, I didn't know there were coupons out there that could help you.
Keyla Caba (5m 56s):
If you didn't have it financially, there were times that I didn't have the money to pay for my medication. I was like, should I sacrifice this? You have to kind of figure out, what am I going to not pay, or what am I not going to do this month in order to be able to pay for my medication. That was when I was like, there has to be improvement in this. We go through so much already and having to deal with a financial issue to try to feel better, I just feel it's not okay. It's not right. That is where I got the fuel to improve, help others, and advocate.
Keyla Caba (6m 36s):
I share my story as much as I can, on many platforms, and whatever is available to me to try to be able to be a light for so many others.
Kate Pecora (6m 47s):
I know your knowledge, the foundation that you have, is passed on, ultimately to your son, who has had to deal with some of these issues with copay accumulators, or potentially not even qualifying for certain things, because of the type of insurance plan that he has to have at the moment. Talk to me about some of that. How does having that experience impact your perception of the healthcare system at large?
Keyla Caba (7m 11s):
He was recently placed on a medication, and we have a high deductible plan, and it's a very expensive medication. Recently found out that we can't use the coupon, because it's actually more expensive using the coupon. We're just trying to meet our deductible, hopefully at some point this year, so we don't have to keep paying for his med. Every month, it's like $300, I think it's something like that. It's really high up there, and I know for myself, I had a similar situation. I was thankful that I was able to reach out to the manufacturer and they helped me get a much more reasonable price for my medication.
Kate Pecora (7m 53s):
Is that the same now, what you're doing for your son's medication? Have you been able to reach the manufacturer?
Keyla Caba (7m 59s):
Honestly, I've been so busy.
Kate Pecora (8m 2s):
That's the thing. I don't think a lot of people realize, not only do you have to deal with your own medical management, but then you have to deal with the admin side of it. It's a full-time job when you're having to deal with somebody else's health, and the obstacles that are placed in front of you, to try to defer care for as long as possible. It's so frustrating.
Keyla Caba (8m 24s):
Yeah, it is. Especially too, in the day-to-day. You just don't know what you're going to tackle. You don't know if you're going to feel good or you're not going to feel good. With so much change, day-to-day, it definitely makes it hard. Thank you for reminding me, because now I'm definitely going to try to go that route as well.
Kate Pecora (8m 45s):
I want to wrap-up talking about support systems. I know you started off, at the beginning, sharing that this is a journey you initially went through alone, and how difficult that was when you were doing it. Do you think, that now, you have a better support system? When I say support system, I don't necessarily mean your doctors, but I also mean family, friends and others, who understand what you're going through. Understand how to support you, whether that is physically, mentally, or taking some brain space. Space that's clogging-up your brain and being able to carry that for you. Do you have somebody like that now?
Keyla Caba (9m 23s):
Yes, I definitely have my family and my friends, and I also work with COCCI, Color of Crohn's & Chronic Illnesses. They're a non-profit, and when I found COCCI, it was just so amazing, because I felt so understood. I just came back from a training with them last month and I probably cried the whole time. Just to be in a room with people who get you, understand you, and make you feel like family and at home, it was such an amazing experience.
Kate Pecora (9m 57s):
Fantastic. Oh, I'm happy to hear that for you! Thank you, Keyla. Thank you for sharing your story.
Keyla Caba (10m 2s):
Thank you for having me.
Dr. Bob Goldberg (10m 8s):
Thank you, Kate, and thank you Keyla, for sharing your story. It was great to meet Keyla, personally, during the fly-in and to walk the halls of Congress with her and advocating for access to new medicines that could bring her child, and Keyla herself, relief. She is a courageous, fighting, advocate and it was great being with her. We're going to have more of these kinds of conversations from the Fly-In, on the way, for future episodes. Follow the podcast, on your favorite app, so you don't miss out. Next week, Terry will be back behind the microphone to join me for a conversation, non-accelerated approval.
Dr. Bob Goldberg (10m 48s):
We dive into a new report that shows accelerated approval drugs are not increasing Medicaid spending. Yet, despite this, there are still policies in place that are making it increasingly difficult for patients to get these new treatments. We'll cover how this impacts you, next week. Until then, on behalf of my colleagues, Terry Wilcox, Kate Pecora, and everyone at Patients Rising, I'm Dr. Bob Goldberg - Stay healthy!