Megan shares the story of Sophia Garland, a young professional who is living with and learning to manage a chronic medical condition that requires specialty medication.
To learn more about technology and access to specialty medications, read the CoverMyMeds Medication Access Report: Complex Care & Specialty Edition.
Read on for Megan’s insights.
Sophia’s Story: Student, Daughter, Marketing Professional, Person Living with Crohn’s
By Megan Marchal, Clinical Pharmacist, CoverMyMeds.
Understanding the unique challenges and concerns patients prescribed specialty medications may face is crucial when developing meaningful products and services for patients and care teams. Unlike other articles from CoverMyMeds, which typically highlight solutions, we’ll be focusing on the emotional aspects and challenges of people dealing with chronic conditions.
The best way to gain this insight is through the eyes of the patient. Today, we bring you the story of 22-year-old Sophia Garland, a young professional currently learning to manage Crohn’s disease on her own since being diagnosed as a child.
THE PATH TO DIAGNOSIS ISN’T ALWAYS A STRAIGHT LINE
After dealing with a bout of illnesses following a return from summer camp one year, Sophia’s mom knew something wasn’t right. After a year of strep throat, stomach viruses and several visits to specialists, Sophia was finally diagnosed with Crohn’s disease at age 12. She managed her condition with medication, regular checkups and was able to enjoy life throughout middle and high school with little or no noticeable symptoms. During this time, her mother managed Sophia’s care. Sophia continues to get MRIs and colonoscopies once a year, which let her providers know how her treatments are working and if any medications need to be changed.
Like many patients facing a chronic condition diagnosis, Sophia had to overcome treatment challenges. When she moved from Missouri to Pennsylvania for college, some of these challenges surfaced. During one of her checkups, her specialist switched one of her specialty medications and increased the dosing frequency to beyond what was typically prescribed for that medication, which resulted in a delay due to prior authorization.
“It’s definitely very frustrating,” Sophia said. “I think it’s hard for me to understand why my doctor is saying one thing, but (insurance) is saying no, and everyone I talk to is trying to help, but I’m on the phone in tears.”
While her medication access was delayed, Sophia’s condition wasn’t being managed which led to a weeklong hospital stay with Clostridiodes difficile (C.diff), an Escherichia coli (E. coli) infection and mononucleosis.
In Sophia’s case, in addition to the physical discomfort she experienced while in the hospital, she also dealt with complications related to her untreated chronic condition. Unfortunately, delays like this aren’t that uncommon. Patients can wait up to eight weeks while navigating specialty medication approvals, which is how long Sophia waited. During this time, patients, like Sophia, can experience worsening conditions and increased anxiety.
One study found many patients are unaware of available support services. For example, 74 percent of patients surveyed didn’t know about services that can help them find insurance, 52 percent weren’t aware of services that help them communicate with payers, and 69 percent didn’t know they can get ongoing support and information about their conditions. Without knowledge of services that can expedite time to therapy or suggest affordable options for expensive specialty medications, some patients can face access and adherence challenges, like huge out-of-pocket expenses that lead to prescription abandonment or delayed treatment.
CHRONIC CONDITIONS CAN COMPLICATE, BUT DON’T HAVE TO DOMINATE PATIENTS’ LIVES
Before and during college, Sophia’s mother predominantly managed Sophia’s Crohn’s disease— scheduling her appointments, picking up her prescriptions and ensuring Sophia was on top of taking her medications. As she graduated from college, Sophia’s mom sat down with her to review all that was involved with managing her condition. “She’d been doing everything for me for probably too long. I definitely needed to take that on for myself,” Sophia said.
Sophia learned how to administer her injections at a local children’s hospital and has been living mostly symptom free since. From an affordability perspective, she only pays a few dollars monthly for medication that normally costs $12,000 per dose thanks to a biopharma company’s savings program. These savings opportunities are available for patients through direct connections with biopharma companies that are built into provider and pharmacy software.
Now, Sophia has moved to a new city and started a new job, a large transition in any young adult’s life, all while learning how to navigate getting her medication, which requires refrigeration and timely administration.
All said, Sophia’s doing great and managing her Crohn’s. “I’m definitely nervous for all these changes in my life, but I don’t think Crohn’s is something that’s holding me back from any of it,” she said.
Read our Medication Access Report: Complex Care & Specialty Edition for Sophia’s full story and more about how technology can improve access to specialty medications.
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