“We live paycheck to paycheck.
It’s stressful, and that is the worst part: the not knowing if we’ll be able to have enough to cover everything from our bills to my prescriptions and funds towards treatment each month.”
~Abigail, diagnosed with multiple sclerosis in 2013
Abigail, 36, was a full time journalist until she had to leave the workforce because of her MS.
Following her diagnosis in 2013, she was prescribed Tecfidera (oral therapy) but her insurance company would not cover the entire cost — it would have been more than $1,000 out of pocket per month. Abigail’s insurance would not allow her to participate in the manufacturer’s assistance program, and other programs rejected her because “my husband made ‘too much’ money for me to qualify,” so Abigail switched to Tysabri, even though “my veins are small, and nurses often have a hard time getting my IV started. It usually takes a few tries, and it’s painful and causes me anxiety.” Abigail must reach $4,500 out of pocket each year before her health insurance will cover the cost of her Tysabri, so she puts “aside $375 per month to make sure I can pay it when that first bill comes after January 1.”
“Our savings quickly drained. We hardly travel to visit family or friends and certainly not for vacation. We’ve sold a lot of our things. I am in therapy for my anxiety and depression. Ongoing insurance coverage is certainly an added source of stress that drains me.
If I ever need to change DMTs, I’ll be thrown back into the insurance rodeo again, and that scares me.”
Life / MS
- Age 36, diagnosed in 2013, RRMS
- Symptoms: “soul-crushing” everyday fatigue, recurrent optic nerve pain, vision problems, spasticity, vertigo/dizziness, balance and cognitive issues, heat sensitivity
- Rural home in Wisconsin; lives with husband
- On disability (former journalist). Works very part time as children’s author
- Abigail navigates doctor visits, tests, treatment, insurance and costs
Doctor / Treatment
- Neurologist nearby is not MS-specialized, knowledgeable about MS DMTs; doctor offered to work with MS specialist 2 ½-hour drive away (who saw Abigail during her first attack in 2011) but Abigail declined
- Abigail takes Tysabri (Biogen) infusion every 28 days
Insurance / Expense/ Assistance
- United Healthcare PPO through husband’s employer premium $138/month
- Abigail must reach $4,500/annual out of pocket maximum before her Tysabri is covered
Harmful Impact
- No savings; living paycheck to paycheck