Joel’s Rare Disease Journey

Apr 8, 2020 | Patient Blog

“The day before we decided to go to the emergency room or the night before rather. I was just in my bed shouting and just rolling around and in pain.”

Little did he know, but teenager, Joel Kirby’s life was about to change forever. Not long after his trip to the emergency room, Joel would be diagnosed with classic Crohn’s.

What Is Crohn’s Disease?

According to the Crohn’s and Colitis Foundation, Crohn’s disease is an inflammatory bowel disease that causes chronic inflammation of the gastrointestinal tract. This rare disease affects fewer than 200,000 people in the United States each year. There is no cure, however, there are improvements in treatment that can slow the progression of the disease through medications such as steroids and immunosuppressants. In some cases, patients may require surgery. 

We recently interviewed Joel for Patient Services Incorporated’s Rare Perspectives podcast to talk about his journey with Crohn’s disease. Here are some highlights from our conversation:

Joel’s Rare Disease Journey

PSI: What led to going into the emergency room in the first place? 

Joel: “It was just one night after dinner, at a pretty big dinner, actually, so it makes some sense. But yeah, so it just kind of gave me a stomach ache and everything and feeling really bloated throughout the night. I ended up throwing up in the middle of the night and then throughout the next week, I just wasn’t able to eat anything because of the pain. It just kept building up, almost like a contraction of pain that got worse and worse and closer and closer together. I wasn’t able to sleep at all. My parents and I were trying different stuff and researching, but it was just getting worse. So we ended up going to the emergency room. It was then when I found out that what I had was classic Crohn’s.”

PSI: What can you tell us about Crohn’s disease?

Joel: “Yeah. So the diagnosis was Crohn’s disease. It’s an autoimmune disease. Pretty much how it works, generally, is that there are certain foods that you’d call them “trigger foods” and they trigger the inflammation or they trigger the immune system to attack your body in a certain spot like in your GI tract. This causes inflammation in your GI tract where it would swell up as more inflammatory trigger foods pass through that point and into your system. And so what happens, is it tightens up and nothing can pass through that. So, it just kind of builds up in your body as your body’s trying to pass it. It’s what creates, like I was saying, the contraction like kind of waves. It makes sense because your body’s sort of trying to push everything through in waves and everything and it’s just pushing against that block point.” 

Is There A Treatment For Crohn’s Disease?

PSI: According to everydayhealth.com, the average cost for treating Crohn’s disease annually is around $19,000. At just over $1500 a month, that’s significant. Joel, you were able to find a treatment that worked for you. What can you tell us about your treatment?

Joel: “I started out on one pill and then went to another one to a couple at the same time. There’s lots of options. Where I ended up landing, which took a while to decide to do, because of just some of the things we heard about it, but it’s really been like just a game changer for me. I am now on a medicine that is administered through infusion. And so I go to an infusion clinic every eight weeks and the infusion of that medicine takes three hours or so to receive. The medicine itself is really meant to help with the inflammation so when I do eat something that’s inflammatory, it helps it not get inflamed. But it also helps keep scarring from forming.” 

Life Without Treatment For Crohn’s Disease

PSI: What would life be like without treatment? 

Joel: “It’s different for a lot of people. I’ve always felt like compared to different circumstances, I see that I’m kind of on the more severe side of it as far as my sensitivity to foods and such. I’m very strict with my diet. So I feel like it’s hard to say, because I’ve been on the medicine for about three or four years. So and it was at that point. I still hadn’t really gotten my Crohn’s under control. And so I do wonder what if I did get off a bit like what would happen and I don’t know. I don’t know to be honest. 

PSI: Just being on the treatment has got to be costly. Can you tell us a little about how the cost of coverage has impacted your family?

Joel: “Yes, definitely a burden on the insurance due to treatment being a really expensive drug. There is an off brand that I’ve been on as well that was much less expensive. About a year and a half ago, I was still on my parent’s insurance when Insurance company actually dropped us. Luckily that happened right after my last infusion so I had eight weeks before my next one to find new insurance. That was actually kind of a tricky time, but it really all came into place and I found a really good spot that’s been consistent and has worked well for me.

Where PSI Comes In

A reality for patients with rare diseases is that they can experience potential lapses of coverage or even loss of coverage altogether. Thankfully. That’s where Patient Services Incorporated can come in by coming alongside patients that are battling with rare diseases. We asked Amy Jackson who’s the insurance case manager for PSI to share with us a little bit about what PSI is doing to come alongside patients with rare diseases and what she would like to tell patients. 

Amy: “The biggest thing is you’re not alone in this fight, you know, we are here and while we may not live your every day to day struggles that you face with your condition, we are here behind the scenes to help you overcome some of those obstacles. We are in your corner and we are fighting for you all the way. Don’t give up because your condition may create a lot of limitations but the possibility for a brighter tomorrow, a brighter future is limitless.

The Power Of Family

There have been many many tomorrow’s that have been made brighter for Joel Kirby. He too has a limitless future. His tomorrow’s are brighter and he too was not alone. In his corner were his mom and dad. 

You can listen to our entire conversation with Joel and hear for yourself how Joel shares about the power of family on PSI’s podcast, Rare Perspectives. You can listen on iTunes here. You can also listen to the episode on Spotify here. While there, we invite you to write a review and share the episode with your family, too.

Your Story Matters

Do you have a story to tell? We’d love to hear from you and maybe, just maybe, even have you on as a guest in a future podcast. You can contact us with your story here.

Who Is PSI?

The founder of PSI shaped the very first non-profit patient assistance model in 1989 and knows the pain firsthand of watching a loved one fight-and-lose their battle against chronic illness; he knows, too, the crippling financial burden often carried by those left behind. Since our inception in 1989, Patient Services has been a pioneer leading the charge to find solutions to the challenges that face the chronically ill in the United States.

We provide financial support and guidance for qualified patients with specific, rare chronic diseases. Through PSI assistance programs patients and their families rediscover hope and health.

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