Pharmacist Feature Friday: Helping Pediatric Patients with Cystic Fibrosis

I discovered my main area of interest when I began providing tertiary care to children with phenylketonuria (PKU) and cystic fibrosis (CF). In this time, I really got to know the patients on the weekly rounds.

In my current role, which I’ve held since March of 2017, I do mostly pediatric care, spending about 3 days a week working with young patients and their families.

The pediatric cystic fibrosis clinic sees patients from birth to 21 years old. Because of these age differences, and because of the nature of the disease, the symptoms of cystic fibrosis can vary greatly. Pharmacists do a lot of medication dosing and checking for interactions. We are also a drug resource, as well as a resource for other individuals in pharmacy, serving as kind of a disease state expert. I also see a fair amount of hospital discharge work.

Patients with CF have many issues with which I can assist them. They are often pancreatic insufficient and need medications to help with breathing. Addressing these symptoms involves everyone in the patient’s circle of care. We provide education to the entire family.

Medication access and working with payers is central to my work. Getting the medications they need is often a frustrating experience for patients and families alike. Certain plans don’t cover everything, or they may be restricted to certain pharmacies. Our job is to help break down those barriers and deal with coverage issues. There is a lot of paper work, a lot of appeal letters.

I’m happy to try and find the best solutions for my CF patients. There are exciting developments in new drugs; the third corrector just came out in February. Now we have the ability to try and correct processes at the cellular level. In addition to providing the medications, as specialty pharmacists we also promote adherence. We make sure our patients have a plan that works. If things aren’t working, we may need to make the necessary changes.

Connecting with people is one of the best parts of my job. I love working with the families. It’s pretty rewarding to see patients with CF hitting their milestones, such as going to college, getting a lacrosse scholarship, etc. They are playing sports, they are getting better.

To anyone considering a career in specialty pharmacy, I’d recommend cultivating flexibility and adaptability with parents, families, caregivers, and patients alike. You need to meet people where they are.

It’s also important to help pediatric patients make a successful transition to adult care teams. This involves not only teaching patients about the medications they need (even the young children learn to say, “I get 2 blue pills and 2 green pills”), but also teaching them the importance of self-advocacy in issues of cost and access. It’s all part of the valuable service specialty pharmacists offer. We help people learn how to take charge of their health.

Rachel Espinosa, PharmD, is a Medication Therapy Management pharmacist specializing in pediatric cystic fibrosis at Fairview Pharmacy in Minneapolis. She spends much of her time with patients and providers at the Minnesota Cystic Fibrosis Center.

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