“Being on a fixed disability income — the cost of everything is going up but the income isn't increasing.
To cut costs, I skip medications, miss doctor appointments, don't pay bills, even stop buying groceries. ”
~Karon, diagnosed with multiple sclerosis in 2010
Karon is a single mother of two grown sons — she uses a wheelchair often and walker (with a seat) at all other times. It’s been two years since she’s driven, due to MS symptoms affecting her balance and concentration. After he finished college, Karon’s now 26-year-old son moved back home to help care for her. Her younger son is away at college.
Though Karon’s disease-modifying therapy, Tysabri, is provided free-of-cost by Biogen, some of her hospital account — for infusion costs — is in collections. She manages to pay her mortgage every month, but has cut spending everywhere else. “I’m not coordinated or balanced enough to cook in the oven. I would fall face first into it.” So Karon “stretches” one crockpot of food each week — she lost 60 pounds last year.
“The last time I went for groceries was four months ago.”
Life / MS
- Age 44, diagnosed in 2010, RRMS
- Symptoms: balance, vision and memory issues; left side tremors; left leg spasticity
- Uses a wheelchair often; uses a walker (with a seat) all the time
- Suburban home in Orlando, Florida; lives with 26-year-old son
- Karon stopped working / went on disability in 2011 due to cognitive changes and physical symptoms
- Her Social Security and long-term Disability is ~$1,600/month
- Karon navigates doctor visits, tests, treatment, insurance and costs
Doctor / Treatment
- MS-specialized neurologist within 8 miles; knowledgeable about MS DMTs
- Karon takes Tysabri (Biogen) infusion every 28 days
Insurance / Expense/ Assistance
- CarePlus, a Medicare Advantage HMO, premium $104/month
- Biogen is providing Tysabri free of charge
- Infusion/hospital costs ~$1,200/month
Harmful Impact
- Limits spending on food to $60-80 every 4-5 months
- In collections on some of her infusion costs — $8,000 balance