“I was taking half of my prescribed dose of DMT to save money. I didn’t feel any different.
But then things started happening. I had a relapse.”
~Janet, diagnosed with multiple sclerosis in 2002
Janet, 52, was pleased to switch from injectable to the oral disease-modifying therapy (DMT) Tecfidera when it was approved in 2013.
In 2015, Janet began skipping one of her two prescribed doses each day — to save money. “I think about the money. It’s stressful.” After a couple of months of skipping doses, Janet was hospitalized with an MS relapse. Back at home with her husband and 9-year-old son, Janet returned to the prescribed two-pills-a-day regimen. She says, “taking my medicine is key — I’ll know if it’s not working.”
Janet says that if she didn’t have MS, she’d be working. She says she wants “to be vital” and tries to keep every bit of activity and flexibility she has, including walking with her husband each evening — so that she can be vital in her family life in the coming years.
“I have to have the medication — I’ll pay that cost because I don’t have a choice.”
Life / MS
Doctor / Treatment
- Age 52, diagnosed in 2002, RRMS
- Symptoms: balance issues, fatigue
- Metro home in Yonkers, New York; lives with husband and 9-year-old son
- Janet stopped working a few years ago, now on Social Security Disability; her husband works full time ~$30k/year
- Janet navigates doctor visits, tests, treatment; her husband handles insurance and expenses, and now goes to doctor visits with her “to listen, too”
Insurance / Expense/ Assistance
- MS-specialized neurologist within 10-15 minutes; knowledgeable about MS DMTs
- Janet takes Tecfidera (Biogen) oral 2x/day
- United Healthcare with Medicare premium $104/month
- A grant that covered some of the copay for her DMT ran out, and Janet had to pay $3,300 for a 3-month supply; now is on the manufacturer’s assistance program
- Janet’s attempt to save money by skipping doses resulted in a relapse including hospitalization
- “I don’t buy a lot of things. Our furniture is 25 years old — since we got married”