Table 4.

Themes arising from participant interviews.

Theme	Example quotes
Financial burden begins prior access issue and impacts the disease-modifying therapy (DMT) adherence	I had to declare bankruptcy because of my first doctor’s bill. We accumulated US $15,000 in debt through the MRIs because they only cover half of one MRI per year and I had 6 that first year…I went from making US $6500 a month to US $1400 a month [on disability] with two kids and a vehicle. I got a little part time job that’s 12 hours a week, US $10 an hour. That pays for my drugs. [Male, age 42 years] Patients are not getting help. We cannot afford insurance. My discretionary income is US $10, that’s why I needed a physician who accepted cash. With co-pay, deductible and premium I could not afford that. [Female, age 45 years] I couldn’t afford the co pay and just quit taking the DMM [disease modifying medication]. I also quit taking other medications I could not afford to purchase. [Female, age 64 years]
DMT access problems and related stress leads to multiple sclerosis relapses	I’ve had a series of bad attacks when the prescription lapsed and when the insurance lapsed. I have some severe damage where it comes to process from the printed page and to spit it back out again. That ability is gone unless it’s in context…I had lesions confirmed. The area with the vocabulary. I’m also a bit slow on the processing. There are things I don’t do so well. It takes me that little extra moment, so there’s this pause in my conversation…Those are the two areas of the brain affected. [Female, age 58 years] You spend 45 min fighting on the phone it’s like working 8 hours. I have to take 2-3 hours of the day for a nap to get my energy back…I’ve done nothing but fight with [my insurance company]. [Female, age 51 years] I had a relapse while waiting to get on [DMT]. My left arm is numb and tingling constantly. [Female, age 54 years]
DMT access issues affect the quality of life	When I didn’t have the medication, I have depression, and that’s not a surprise when you have MS, and it affected me really bad, especially without the [DMT] and I can’t afford it. I kept thinking I don’t know what’s happening inside of me and are things happening to me that I won’t be able to come back from? Not having the medication really affected me emotionally as well.” [Female, age 59 years, on Medicare with too high co-pay] My husband has to work 10 hour days and he’s stressed because of me. I worry about him. If I couldn’t get coverage on HC.gov, I could have gotten on my husband’s plan but that would have been more money, more money out of his paycheck. I went for the lesser of two evils but it’s still US $352 per month. There’s gotta be an in-between. I look for miracles. Someone that doesn’t qualify for disability there has to be some safety net. [Female, age 51 years]
Personal resources enable access to overcome DMT barrier	I had a 2-month delay to get the authorization. The prescription took over 30 days. First, they sent it to a retail pharmacy and it was rejected. Then it was sent to the wrong specialty pharmacy, and they denied it. Finally, after a month, I got the prescription. I used to do billing for Medicare, so I was familiar with pharmacy denials. Someone else would be lost, they would have had to do without their medicine. The fact that I got the prior authorization, I knew I didn’t have to pay full-price. I knew it should be covered under my plan. [Female, age 64 years]