Shortly after Aaron Holderby met his future wife, Mary Beth, his world totally changed. A short time into their courtship, Mary Beth revealed to Aaron that she had been diagnosed with Alpha-1, a genetic condition that can result in serious lung or liver disease. Aaron was scared, but he didn’t shy away from this challenge. Instead, he educated himself on what their options were as a couple and how they could take the next steps to keep Mary Beth healthy and strong.
Sixteen years and five kids later, the Holderbys have written their own happy ending. Aaron takes an active role in Mary Beth’s treatment — he aids with her appointments, helps administer her treatments and works in a support role to help Mary Beth manage her Alpha 1.
The Holderbys’ story isn’t only special because they’re a success story, it’s also special because their Alpha-1 journey doesn’t end with Mary Beth. Aaron now works full time as a Coram® Patient Advocate, dedicating himself to educating and supporting a network of Alpha-1 patients across the country. With a broad smile, disarming laugh, and a level head on his shoulders, Aaron has helped countless folks become connected and educated after their Alpha-1 diagnosis.
We sat down with Mary Beth and Aaron to talk about raising a family together, life with Alpha-1, and how Coram and CVS Specialty® have helped make her treatment a whole lot more manageable.
Being diagnosed with Alpha-1 can be intimidating, not just for the diagnosed, but also for their family members. What drives you to be proactive to help Mary Beth day in and day out?
Mary Beth came home from her Alpha-1 education day with a whole bunch of information to try and understand. I thought, “I’m committed to this woman. I want to be her ally and advocate. Whatever she’s going through, I’m going through it too.” That’s part of the vow you make: in sickness and in health. It was important for me to partner with Mary Beth on her treatment. I mean, we’re both going through this together.
On top of your work as a Coram Patient Advocate, you administer IVs and provide support to assist Mary Beth however you can. How did that start?
The best way to be helpful is to learn about the disease first. In those beginning weeks, asking early questions was so important. What is Alpha-1? What medicine does she need to take? How can I help? After several weeks of Mary Beth’s infusion therapy, I thought maybe I can learn how to start an IV. Now, it’s part of our weekly routine and only takes an hour every week. It was just about finding ways to be of service however I could.
How did you find out about the Coram Patient Advocate Program?
We were contacted by Coram to let us know that a position became available to be a patient advocate for Alpha-1 patients. It was initially offered to Mary Beth, but she had risen in the ranks of her job and didn’t really want to leave. I thought, “I wonder what they’d think about the husband of an Alpha-1 patient taking this job?”
They loved it, and they were excited about the position going to someone in a caregiver role. It gives a different perspective on things. Since taking my position, I’ve been able to not only partner with Coram to share our experience, but also be an encouragement to others — wherever they are on their journey with Alpha-1.
What does a typical conversation sound like with an Alpha-1 patient?
There are no typical conversations. Everyone has a unique experience. That said, we do have some commonalities in our discussions with folks who have been diagnosed. It’s important to listen and to help them understand that they are part of a community.
I tell them they are not alone. We’re here as advocates to share our experience and let them know that any time they need us, we want to help. That can mean sharing my experience, or just being an ear to listen. I want to tell them, “It’s going to be OK. Not because there’s nothing wrong, or that it isn’t going to be hard, but because now you understand what is ailing you.”
That’s the first step. Next, as patient advocates, we’re going to help educate you on the purpose of your therapy, how to stay on your therapy, and what insurance will or won’t cover. We want to walk on that path alongside you and be of help.
Has COVID-19 impacted Mary Beth’s therapy, and how has CVS Specialty played a role?
Alpha-1 patients represent a higher-risk population so we want to make sure her therapy stays consistent — even during a pandemic. Her pulmonologist has really emphasized this. We had a call at the beginning of the pandemic and he just about yelled, ”Make sure you get your therapy!” (laughs) We just need to keep Mary Beth at that protective threshold. She’s on a tier-five medication, which takes some planning and prepping. CVS Specialty and Coram both have been great about this. We get calls from them when we have one dose left to let us know that we need to get our next round of treatments set up. They’re proactive in their approach, not reactive.
What would you tell an Alpha-1 patient who doesn’t have an Aaron in their life right now?
I’d say you need to let someone be your family in this situation. I tell patients you have to find those support people around you, wherever they are. They can be an advocate or a pharmacist or a nurse. If it feels like you’re swimming alone — you’re not. There are many folks out there that have walked the path that you’re just now starting.
As advocates, one of our main roles is to support patients and their caregivers. That can take many forms now, whether that’s meeting in a remote way or (at other times) meeting in person. We even provide tools to help find local support groups. Now, you have a network that cares and wants to connect. That’s really important — not just for your education, but for your ongoing treatment, support and wellbeing. You’re not in this alone. We can do it together.
Read more about Mary Beth’s Alpha-1 journey with CVS Specialty.
CVS Specialty and Coram CVS Specialty Infusion Services (Coram) have partnered to dispense and administer infused augmentation therapy to Alpha-1 patients. To learn more on how Coram is keeping you safe and healthy at home during infusion treatments, click here.