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Karon

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Karon and her sons

“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

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