Patient Support Services

Her doctors recommended an MS drug administered through an infusion every six months. While grateful for an option to help manage her symptoms — she had lost 25 percent of her vision in both eyes and could no longer drive — Patricia was hesitant.

“I struggled to say, ‘Schedule me for the infusion,’” she said. “I spent most of my savings going from doctor to doctor. I’m not sure what answer I was looking for. I was looking for something less invasive.”

Patricia finally decided to try the infusion when she came up for a promotion at work. She didn’t want her MS symptoms to interfere with her new responsibilities. Then she heard the price: a $6,500 copay for each infusion, with what she was told was very good insurance through her employer.

Of patients with employer-sponsored insurance at large firms (200+ workers), 45 percent have a plan with at least one specialty drug cost-sharing tier.^[1]2020 Employer Health Benefits Survey, Kaiser Family Foundation, 2020 Most of the time, the higher a drug is in a tiered system, the more of the cost patients are responsible for.^[2]Marketplace Pulse: Cost-Sharing for Drugs Rises Sharply at Higher Tiers, Robert Wood Johnson Foundation, 2019 Among patients at large firms in a plan with at least one separate tier for specialty drugs, 53 percent have coinsurance, with an average rate of 26 percent.^[1]2020 Employer Health Benefits Survey, Kaiser Family Foundation, 2020

Go deeper into this year's full report to discover more data-driven insights and analysis — including more about the future of accessing specialty therapies. Download the full 2021 Medication Access Report.

Those in high deductible health plans are more likely to either have the same cost-sharing regardless of drug type or to meet the plan deductible before drug costs are covered.^[1]2020 Employer Health Benefits Survey, Kaiser Family Foundation, 2020

Per capita specialty medicine spending has nearly doubled since 2009, representing $517 out of the $1,044 total per person medicine costs in 2018.^[3]Medicine Use and Spending in the U.S.: A Review of 2018 and Outlook to 2023, IQVIA, 2019

“I was still trying to plan my vacations, and it became vacations or MS treatment,” she said. “I don’t know how people can afford to be sick and still live their lives. So, I opted out. I canceled (the infusion).”

Patients are more likely to abandon specialty therapies than any other drugs during the deductible period of their insurance, possibly leading to worsening conditions and future hospitalization.^[3]Medicine Use and Spending in the U.S.: A Review of 2018 and Outlook to 2023, IQVIA, 2019

“I take it one day at a time and hope … I’m not going to find out when it’s too late that I really should have been on medication.”

Specialty Therapy Access Barriers

While the high cost of specialty medications can feel like a staggering barrier, simply accessing therapy can prove even more difficult. Kathy said the stress of juggling multiple provider expectations and test results to manage her MS can trigger cognitive fog or “cog fog,” a momentary loss in mental clarity.

“I have had full-on ‘cog fog’ flares after having to deal with this stuff,” Kathy said. “It’s too much to ask a patient to have to do, and it has affected my health, no question.”

Patients have to spend the “good” days of their chronic conditions managing those conditions. They spend the other days just getting by.

Eighty-two percent of those prescribed specialty therapy reported spending an hour on the phone coordinating care to begin specialty therapies.^[4]CoverMyMeds Patient Survey, 2019 Over a third spent at least three hours.^[4]CoverMyMeds Patient Survey, 2019 Specialty hub programs designed to navigate the process of starting and maintaining complex therapies can help alleviate this time burden. Providers can direct patients to specialty hub programs designed to provide centralized patient services for financial assistance, benefit coordination, pre-therapy support and managing adherence programs. Ideal hub programs allow providers to enroll patients electronically for a seamless transition to therapy.

Patients can then electronically navigate affordability, benefit verification, pharmacy access and medication mode of delivery. In some cases, such inclusive patient support services have contributed to a 34 percent reduction in time to therapy.^[5]CoverMyMeds data on file, 2020

COVID-19 disrupted specialty medication distribution and administration, but the shifts to keep patients out of facilities may have opened doors to more accessible therapies. Data shows that many patients who receive provider-administered drugs in hospitals or facilities shifted to self-administered oral, patient-injectable or home infusion drugs.^[6]Monitoring the Impact of COVID-19 on the Pharmaceutical Market, IQVIA, 2020 Many payers relaxed restrictions on home infusions to allow specialty patients improved access to their medications.^[7]RIN 0938-AU31 Medicare and Medicaid Programs; Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency, Department of Health and Human Services, 2020

While the pandemic revealed many shortcomings and risk areas for those living with chronic conditions, it also revealed the resiliency of the industry and, more strikingly, of patients.

“When COVID hit and people were social distancing, I had it a little easier than people who were not struggling with an autoimmune disease,” Patricia said, referencing her caution while living with MS. “People had to figure out what life would look like when your world has to slow down but the rest of life is still going.”

As we move toward a COVID-19 vaccine and learning how to navigate a world beyond the pandemic, patients with chronic conditions will still need ways to manage their care.

“MS turned my world upside down,” Patricia said. “COVID did not turn my world upside down.”

The Medication Access Report is developed in consultation with an advisory board of healthcare experts representing major organizations across the industry — each with unique perspectives, interests and opinions.