Serena Hostvet has trouble keeping her hand steady when drawing something simple like a pumpkin, and it infuriates her.
“At this point, I would just give up,” said Hostvet, 43, of Eau Claire, Wisconsin. “Art is an essential part of me. Not being able to do it as often or as well as I used to is depressing.”
It’s also how she makes a living. Hostvet designs jewelry and creates original illustrations for small businesses. “Everything I do is with my hands,” she said.
Hostvet has multiple sclerosis, an autoimmune disease that affects the brain and the nerves that extend from her spinal cord into her body. In addition to shaky hands, Hostvet’s vision is compromised. She struggles at times to come up with words in everyday conversations.
Her specific type of the condition is the most common form, called relapsing-remitting multiple sclerosis, or RRMS. People with this kind of MS experience periodic flare-ups of symptoms — numbness and trouble walking and seeing, for example — that can last for weeks.
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Following a relapse, symptoms “can improve anywhere from 0% to 100%,” said Dr. Fred Lublin, director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at the Icahn School of Medicine at Mount Sinai in New York City. That means there’s a good chance that patients will be left with ongoing problems.
“Each attack has the potential for permanent damage,” he said. Lublin is not part of Hostvet’s care team.
A ‘final decision’?
There is no cure for multiple sclerosis. Medications can help suppress the immune system so it stops attacking the brain and spinal cord, although the cost of the drugs, and their effectiveness, can vary widely.
Hostvet’s care has been caught up in what’s known as “step therapy,” where health insurance companies require patients to try cheaper drugs that may or may not work before moving on to more expensive ones prescribed by their doctors.
The approach is relatively common. A 2021 study found that step therapy may be applied in up to 57.5% of health plans.
Per Hostvet’s doctors, she tried a medication called dimethyl fumarate, a pill that costs less than $1,000 a year. Within weeks, Hostvet developed severe flushing and debilitating gastrointestinal side effects and had to stop taking the drug.
She tried another pill, teriflunomide. On it, she lost vision and the ability to see colors correctly in one eye.
What occurred next was a nearly two-month long struggle between the doctor and Hostvet’s insurance company, Anthem Blue Cross and Blue Shield, to approve yet another medication, Ocrevus. That’s given through an IV infusion twice a year for what could be the rest of the patient’s life. Ocrevus is also quite expensive. Drugmaker Genentech lists its price at $78,858 each year.
Hostvet’s doctor at a branch of the Mayo Clinic, who declined to be interviewed, wrote letters to Anthem Blue Cross, urging them to provide coverage for the drug which treats adults with relapsing or progressive forms of multiple sclerosis. Hostvet shared with NBC News the back-and-forth communications between her team of physicians and Anthem Blue Cross, detailing how the insurance company pushed back twice on requests to pay for the drug.
“This is our final decision,” an Anthem Blue Cross representative wrote to Hostvet on Oct. 10. “Your grievance rights with us are exhausted.” Hostvet had been with Anthem Blue Cross since 2011.
NBC News reached out to Elevance Health, which owns Anthem Blue Cross. In a statement, the company said it was originally “unable to verify” that Hostvet had undergone the appropriate step therapy.
Once the company was able to verify Hostvet’s treatment, however, it “promptly approved the treatment.”
On Wednesday, Hostvet got her first infusion of Ocrevus. It was a “big stress relief,” she said.
But it’d taken two months for Hostvet to receive the medication prescribed by her doctors. That’s two months that Hostvet went without treatment for her multiple sclerosis.
Such a delay in treatment puts added stress on patients, which in turn puts them at risk for a relapse, said Bari Talente, executive vice president of advocacy and healthcare access at the National Multiple Sclerosis Society. “It can be very challenging and potentially damage someone’s health.”
Lublin said it’s reasonable for insurance companies to ask patients to try less expensive treatments — to a point. Each day a patient goes without proper treatment, he said, puts that person’s life at risk.
Hostvet acknowledged that the system can be overwhelming, especially for someone with a chronic disease.
“It’s exhausting, but don’t stop,” she said. “Contact everyone you can. There will be someone out there to help.”
