Like many living with chronic medical conditions during the COVID-19 pandemic, Jzon had to get creative just to survive. In the early months of the pandemic, that meant voluntarily turning down medical care at the hospital.
As the coronavirus spread across Florida during July 2020, Jzon experienced a multiple sclerosis (MS) relapse. Upon the advice of his medical team, he went to the hospital for an infusion of steroids and a plan to set up home infusions later. The ER staff at the hospital had other thoughts — they wanted to admit him. But the waiting room, Jzon said, was too full, and he feared a possible COVID-19 infection.
So, he went home — a decision he came to appreciate later more fully.
“If it wasn't for my self-advocacy and due diligence, I would have been among the 52 people that two days later had (COVID-19),” Jzon said.
Following his MS relapse, Jzon continued to struggle with consistent healthcare access. Due to the number of people preferring home over hospital visits, Jzon had difficulty scheduling a traveling nurse to set up the at-home steroid infusions. He also couldn’t see his neurologist in person for six months following the relapse — a challenge to part of his treatment plan that includes hands-on evaluation.
The last year was bleak for many patients — not just Jzon. The 2022 Medication Access Report explored these challenges and found many patients continue to face obstacles accessing, adhering to and affording their medications. The report’s findings are sobering.
Eighty-four percent of patients surveyed for this year’s report said they delayed or skipped in-person healthcare visits over the last year. Fifty-five percent cited COVID-19 restrictions or resource shortages, and 42% — like Jzon — cited fear of contracting the virus. Nearly 1 in 3 patients avoided or delayed urgent care, and 1 in 5 avoided or delayed emergency room care in 2021.
The data shows patients struggled to afford their medications last year, too.
When the reality of the COVID-19 pandemic settled in, Jzon joined the wave of employees who quit or lost their jobs. In Jzon’s case, he quit his job at a brewery to better focus on managing his MS. Aside from the “godsend” of government-issued stimulus checks, which Jzon said helped “alleviate some of the bumpiest roads,” he only resorted to borrowing money once — a particular point of pride.
“Outside of that, I just tried to be inventive,” said the single father of three boys.
Over the last 12 months, 79% of patients found their prescription cost more than expected at the pharmacy counter — up from 67% a year ago.2022 Medication Access Report
Often, he found ways to earn extra money, buying time to put off tough decisions over whether to pay medical bills or living expenses — a process Jzon called his “life-management juggling act.”
Patients know this song-and-dance routine too well.
Over the last 12 months, 79% of patients went to pick up their prescription at the pharmacy only to find it cost more than they expected — up from 67% a year ago.
To better afford their medications, many patients made sacrifices.
Fifty-six percent tried to stretch out a prescription — up from 41% in 2020. Fifty-two percent reported skipping bills or other essential items to afford medications or treatments — up from 43% in 2020. And 51% reported forgoing medications or treatments to pay bills and other essentials — up from 36% in 2020.
For his part, Jzon got proactive — something 90% of patients said they’ve had to do over the last 12 months, too. Proactive measures for Jzon included using a patient assistance program, which only 12% of patients said they’ve done.
Most commonly, patients said they talked to their doctor (49%) or pharmacist (44%) about affordability options — or used a copay card, biopharma company coupon or a cash discount card to lower out-of-pocket costs (38%).
In 2022, the horizon teems with possibilities for the healthcare industry. To explore what's in store, check out the four key medication access trends identified by our leaders in the 2022 Medication Access Report.
Of all the changes he made over the last year, Jzon said he hopes two stay: pharmacy home delivery and telehealth.
More than two-thirds of patients said they’re most often using mail order, home delivery or online pharmacies to receive their medication.
Jzon is now one of them. He switched to a pharmacy offering delivery after the lines at his previous one grew too long, and they started testing for COVID-19. He loves the convenience of delivery so much, he bought a $20 smart garage-door opener so the delivery person can safely leave the medications on a shelf in his garage.
Within the last year, Jzon also joined the 84% of patients who participated in a telehealth appointment. In addition to routine virtual visits with his neurologist, Jzon also used telehealth to treat a skin condition. Of patients who participated in telehealth, 55% met with their primary care provider, while 48% had an appointment with their specialist provider.
Jzon said the convenience can’t be beaten — a sentiment most patients shared.
When asked why they chose to participate in a telehealth appointment, 66% cited convenience — up from 56% in 2020. Other reasons include cost, reduced wait time and to prevent the spread of COVID-19.
Jzon’s focused on the basics.
"I try to maintain a healthy diet, some semblance of exercise, living in a stress-free environment — all of the holistic and medically advised things needed to gain that nirvana we chronically ill seek, which is to not be ill,” he said.
For decades, the U.S. healthcare industry has wrestled with using technology and timely insights to address quality, cost, choice and convenience to create better outcomes for patients like Jzon.
It’s been a long hill to climb, but in the last two years we’ve witnessed new digital health solutions emerge to meet the heightened needs of care teams and patients. By adopting newfound workflows and the latest technology to navigate patient care, the industry can further improve patient care and progress toward the vision of improved outcomes.
To learn more about how affordability challenges faced by patients with chronic conditions, read the 2022 Medication Access Report: Oncology edition.