A Tale of Two Nurses on the Specialty Medication Journey

Why did you go into nursing?

Kelly: To make connections with patients. To put them at ease, so they’re not as anxious. Cancer is scary. Chemotherapy is scary.

Jen: To make patients feel safe and secure and to listen as they face the unknown. CF is a chronic and progressive disease, and diagnosis typically occurs in infancy. That’s a lot of unknown for a new parent.

How has nursing changed since you started?

Kelly: The feel of nursing has changed a little. COVID-19 put a spotlight on nurses for a short time and people realized, “Oh, that’s what nurses do?” In oncology, there are always new medications and updated standards of care.

Jen: Technology has changed. When I first became a nurse, I worked at the bedside in a pediatric ICU. We were charting vital signs and assessments on paper. Now it’s all at the tips of our fingers in an electronic medical record, with access to medical records from different health systems.

What is the specialty medication journey like in an oncology clinic?

Kelly: Starting patients on a new specialty therapy after a diagnosis takes time and extensive coordination. Before beginning treatment, a patient may look for a second opinion, need more tests, go back and forth with insurance for prior authorization, figure out costs—all before the order for these medications can be placed and the patient scheduled for their infusion.

The process is difficult because it doesn’t always go in that order. Patients are eager to get started, especially if they get a cancer diagnosis. They wonder, “Is my cancer spreading? Is it growing if I don’t get started now?”

People sometimes tell me they got diagnosed months ago—but we’re just getting started now. So, they’re feeling anxious.

What is the specialty medication journey like in a CF clinic?

Jen: CF is a genetic disease that causes the body’s secretions to be thicker than they should be. It’s tougher to cough up respiratory secretions, for example, and for a CF patient, an otherwise normal cold could lead to a bacterial infection in the lungs.

Luckily, life expectancy has been increasing in part to new medications. One is a class of drugs called the Cystic fibrosis transmembrane conductance regulator (CFTR) modulators, which works specifically on the malfunctioning CFTR protein.

It typically takes two to five days to get a prior auth approval decision, but if there's a denial, the clock starts over again. If there’s no alternative medication, the care team will collaborate and put together an appeal letter. Sometimes there aren’t alternatives when it comes to specialty medication. We aren't going to divert to Plan B because there really is no Plan B. So, we do everything we can as a care team to get approval and the patient gets the most appropriate treatment.

Specialty medications have high price tags. How does this affect patient care?

Kelly: No one can afford it. It’s absurd. Many of my patients are retired and on a fixed income. But the drugs can cost thousands. If the patient needs the treatment, we must figure out how to pay for it. We have staff dedicated to helping with insurance coverage and finding grants and other financial assistance so the patient can start treatment. Costs can be a barrier. But they shouldn’t be.

Jen: The average monthly cost for a CFTR modulator is about $25,000. On our team, we have wonderful pharmacy liaisons who enroll patients in support programs to help with costs. Inhaled medications for asthma, for example, are not specialty medications, but they’re also relatively expensive. That’s why we try to foster an open dialogue, so the patient will feel comfortable telling us they can’t afford their medications, and we can try to find an alternative.

What is care collaboration like on your team?

Kelly: We work closely with the physicians. We go to them throughout the day with questions or concerns. We double-check orders and if something isn’t right, we work with them to fix it. We also coordinate with pharmacy staff with questions about medications and administration. We work as a team and everyone has a voice. What I have to say as a nurse is valued, for example, because I give the treatments.

Jen: We work with a multidisciplinary care team: pharmacist, genetic counselor, pharmacy liaison, respiratory therapist, dietician, social worker, physicians, nurse practitioners and nurses. Our pharmacist and pharmacy liaison are crucial in doing proactive prior authorizations, so we aren't finding out that prior authorization is needed for a critical specialty medication when the patient goes to pick up a refill.

Has burnout been a challenge in nursing?

Kelly: There are expectations and there’s reality. There’s “nursing”—and then there’s charting and appeal letters and everything else that can get in the way of patient care. Burnout is more from those things than it is from actual patient care. What keeps me here is the patients.

Jen: Fostering meaningful relationships with patients isn’t possible if you aren’t in nursing for the right reasons. Paperwork—like appeal letters—certainly contributes to burnout. But knowing that work pays off because patients get the treatment that will improve their quality of life? That’s what keeps me coming back.

Do you see yourselves in nursing 20 years from now?

Kelly: It's always subject to change, but it’s what I like to do. I can’t imagine myself doing anything else. I just hope that in the future, things will continue to change for the better when it comes to advancements in oncology. Better care ultimately leads to a better quality of life.

Jen: I don’t know what the future holds for me, but I am heartened by advancements in CF. Life expectancy was only 38 years of age a decade ago. Now it’s 53. That's a huge jump in a short time—and it happens to be when the modulators first became available. Patients’ lives are improving, and helping people is the main reason I went into this field.