Karen Lewis: navigating the healthcare system she once knew
Karen Lewis thought she knew her way around the healthcare system. After all, she worked for nearly 50 years as a registered nurse, specializing in orthopedic surgery.
What’s more, Karen has lived with multiple sclerosis (MS) since 2006. Managing this chronic autoimmune disease, among other health conditions, has involved countless medical appointments, tests, and treatments.
“I’m pretty familiar with how things work,” said Karen, 71, who lives in Phenix City, Alabama.
However, Karen’s quest for appropriate, affordable healthcare in her retirement years has tested her knowledge of, and confidence in, the field she dedicated so much of her life to.
Karen was covered by private health insurance until she retired in 2019 and transitioned to Medicare. At that point, she and husband Randy would be on a very fixed income. Knowing she would need help paying for her MS prescription, Karen signed up for the manufacturer’s financial assistance program.
Then, in late 2020, Karen’s MS medication was dropped from that program. She and her neurologist scrambled to find an alternative. That’s when they learned her Medicare plan had a list of preferred MS medications to choose from.
But there was a problem: Karen couldn’t take any of them.
Not only were the formulations quite different from what she had been taking for years, but the drugs weren’t advised for someone with a history of cancer, eye problems, or heart problems—which all applied to her. Karen’s provider recommended a fourth MS treatment, but she had no idea how hard she would have to work to get it.
For Karen, the first half of 2021 was a blur of phone calls, letters, and documentation as she and her neurologist’s office tried to get her insurer to approve a drug that would be safe for her to take. Time after time, the request was denied. Time after time, Karen appealed the decision.
She had encountered a step therapy policy, or “fail first” policy, which requires patients to try and fail an insurer-preferred medication before covering the medication that was originally prescribed. This harmful practice can lead to delays in care, severe side effects, and irreversible disease progression.
I never thought I would come to this time in my life when I had to depend on the kindness of strangers. I appreciate that PAN is there to help me, that somebody is trying to help me.”
Karen Lewis
For Karen, the experience was baffling and agonizing. “I was trying to take care of my health, and a panel who knows nothing about me or my health was making decisions about my care,” she said. The time-consuming process raised her stress levels, in turn igniting flare-ups of her MS symptoms.
“It’s very disheartening. It shouldn’t be this way,” Karen added.
Eventually, a hearing was held where Karen could make her case to a judge. The insurance company agreed to approve the new drug—just as her existing medication supply was about to run out.
With that matter resolved, Karen is doing well on her new medication. Her MS symptoms have stabilized, and the numbness is restricted to her toes most of the time. She enjoys an active lifestyle: hitting the gym three times a week, attending concerts with friends, and spending time with her daughter and two grandchildren who live nearby.
But Karen still needs help paying for her MS prescription, which isn’t fully covered by Medicare Part D. The specialty drug carries an out-of-pocket price tag of $2,000 per month. Ever resourceful, she discovered the PAN Foundation through her local Social Security Administration office.
“I never thought I would come to this time in my life when I had to depend on the kindness of strangers,” she said of her copay grant from PAN. “I appreciate that PAN is there to help me, that somebody is trying to help me.”
Even with financial aid, the Lewises’ budget is still tight. Karen and Randy, a retired truck driver, used most of their retirement savings to buy a condo, preferring a stable mortgage over unpredictable rent prices. She still works part-time to cover their joint healthcare and living expenses, taking nursing shifts at the hospital and serving as a home health aide.
Karen is determined to figure it out. If MS has taught her anything, she said, it’s to keep persevering: “As one of my neurologists said, ‘You live MS, you don’t let it live you.’ … We’re just doing the best we can.”
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