When Ella’s monthly supply of modafinil didn’t arrive in the mail in late August, she wasn’t sure what to do. They’re not like the pills she takes for her allergies or her blood pressure. “Without it, I might not be able to get up for three days,” she said. A 65-year-old on a fixed income, Ella has normocytic anemia and multiple sclerosis, chronic fatigue being one of the more pronounced symptoms of the latter. The drug, modafinil, also known as Provigil, is about the only thing that keeps her going.
“There were times when I would be in bed and I just literally had no strength. Sometimes you don’t even feel like eating because that means you have to move,” she said. For the past year, her prescription has appeared in her mailbox like clockwork, but when it didn’t, she couldn’t just go to the pharmacy for more. Modafinil is a controlled substance, and very expensive besides; $3,000 or more out of pocket. Just trying to get it replaced was stressful, and for someone with Ella’s condition, stress can be a killer. “It can cause paralysis,” she said. “Things will start shutting down in my body.”
She called her post office to try and find the missing meds. “I told them, ‘This has got to stop happening. Y’all are messing with our lives, really,’” she said. “That medication, you can’t just stop taking it.” Ella stretched her supply as long as she could, but it eventually ran out. After that, she had to borrow pills from another patient. “I don’t like doing that,” she said. “Nobody should have to do that.” A week later, the post office still hadn’t found her medicine…