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Mary Beth Holderby has big plans for 60 years from now. While laughing during our recent conversation, she explains that she wants to be on one of those Smucker’s® jelly jars that celebrate someone’s 100th birthday. It’s a funny comment, but the idea illustrates who Mary Beth really is: a mother, a wife, a goal-setter and — above all else — a fighter.
This is because since her early twenties, Mary Beth has lived with Alpha-1, a genetic condition that can result in serious lung or liver disease. At the time of her diagnosis, Mary Beth was devastated — but that hasn’t stopped her from living life on her own terms. For nearly two decades, Mary Beth and her husband Aaron, a patient advocate with Coram®, have taken a proactive approach to her treatment, utilizing both CVS Specialty® and Coram to support her journey.
Here’s the thing — talking with the Holderbys, you forget about Alpha-1. Instead, you see the world through their eyes. They have a zest for life that’s just plain infectious. That doesn’t mean it's always easy. As a wife, bank employee, and mom of five kids, treatment can’t be easy to schedule, but with these many motivations it does explain why she’s so adamant about living her best life.
We sat down with Mary Beth and Aaron to talk about raising a family together, life with Alpha-1 and how CVS Specialty has helped make her treatment a whole lot more manageable.
Could you tell us a little bit about your early journey with Alpha-1?
As a kid, I’d get sick every December. It was like clockwork. If I didn’t nip it in the bud, I'd get bronchitis or pneumonia. I always thought, “Why am I the sickly one?” but I didn’t think beyond that. Then, in 1997, my grandfather was diagnosed with Alpha-1. We were at a family reunion and he had us all together to reveal his diagnosis. He explained how it could be passed down to us. Purely out of respect for my grandfather, I got tested.
A couple of weeks went by and I got a packet in the mail that said I had tested for Alpha-1 deficiency. At this point, I’m 21 and I looked at my grandfather and thought, “I have what he has?” I was devastated. The first six years after my diagnosis was a roller coaster. I would be out with friends and they were smoking and I’d think, “I shouldn’t be around these people because I don’t want to make my condition worse.” Then I’d think, “No. I’m young, I’m invincible.” It was a constant battle. The whole time I was scared to death because I was ignorant about the next step. That changed when I started treatment.
How did your treatment start? How has it made a big difference in your life?
I came home after my first dose of treatment in 2003 and the difference was like night and day. It was exciting. Aaron asked, ”Are you OK?“ because I couldn’t stop moving around. I felt great for the first time. I didn’t get sick at all that winter. At first, I thought it was a fluke thing, but the next year, the same thing happened. I felt just great. That was a big deal. I was like, ”This is awesome, I actually feel good!“ That was encouraging, especially early on in therapy.
What does Alpha-1 therapy look like for you?
Aaron, my husband, administers an IV infusion once a week. We used to have a Coram nurse come do it, but it was more convenient for our family if Aaron learned how to administer the infusion treatment. Coram played a big support role in this. He was trained on how to administer an IV from our Coram nurse at the time.
It takes 15 minutes to a half-hour for prep and about an hour for treatment. Aaron asked one time if I ever got sick of it and I said if an hour out of my week is going to keep me moving for the next 25 or 30 years, then that’s an easy choice. After a while, it’s just like brushing your teeth (laughs).
This is a degenerative condition, so you want to start treatment as early as possible. The average age of diagnosis is 57 years old, but I was diagnosed and started therapy in my twenties. That’s why I tell people to get tested if they have symptoms and a family history of COPD. Therapy can make a huge difference, now and also years down the line.
How did the CVS Specialty CareTeam support your treatment process?
My CareTeam asked how they could fit into our existing plan. We were lucky because Aaron takes such an active role in my treatment already. When my CareTeam saw our referral they said, “We’re gonna let you take the lead, but we’re gonna support you however you need — through pharmacists, through nursing, even though the benefits verification team.” It was a group effort, without a doubt. We certainly couldn’t have done it on our own.
One specific thing I like about the partnership CVS Specialty and Coram have is that they’re very proactive in their approach. They’re always tracking the refill schedule, so they call us whenever there’s one dose left so there’s no lapse. They’ll call and say, “By our calculations, you should have one dose, let’s get your next four doses set up.”
Your husband Aaron is a Coram Patient Advocate. What does that mean?
Imagine being someone diagnosed with Alpha-1 deficiency. It’s something you’ve never heard of, and you’re just handed a big stack of brochures. When you walk out of the doctor’s office all you can think is, ‘Now what did he say I have? What kind of medicine do I need?’
That’s where Aaron comes in as an advocate. He says, ”It’s OK. Now you understand what’s been ailing you. We’re gonna help educate you on the purpose of your therapy and about staying on your therapy, and about what your insurance will or won’t cover.” He walks them through that path and tries to help them with whatever they need. Coram advocates are just that — advocates and resources for the people they serve.
Aaron plays a big role in helping manage your treatment. What would you tell an Alpha-1 patient who doesn’t have an Aaron in their life?
You don’t need to do it alone. That’s the benefit of the Coram Patient Advocate Program. Aaron and the other advocates have a special relationship with the people they care for. He always tells new patients, “Let us be your family. Let us partner with you. When you have an issue, come to us, whether that means an advocate or your pharmacist or your nurse. If you feel like you’re swimming alone, you’re not. Let us help you. You are not alone.”
As someone who has nearly 20 years of experience, what would you tell someone who has just been diagnosed with Alpha-1?
You need goals. My thought process has never been “I’m gonna die from Alpha-1.” Yes, I have Alpha-1. I know that, but you still need those goals. They don’t have to be a big deal. What can you do today? It might take two days to clean our house. It might take 30 minutes to walk to the mailbox, but you know what? I’m able to do that. I can make these little steps.
And that’s what it is all about. Just taking little steps day by day. I had a fellow Alpha-1 patient tell me, ”I was never able to vacuum my house, but you told me to take small steps and have goals — so that’s what I’m doing.” And I just thought that was so great. It’s really important, not just for you, but for everyone around you. When you set goals it means you plan on being here. That’s exactly why I plan on being on that Smucker’s jar. (laughs)
Read more about Aaron’s role as a Coram Patient Advocate.
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.
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