Paying for Care
Care for MS can be expensive. The people we interviewed described many costs associated with MS care, including medical specialists, specific diagnostic tests, medical supplies, and drug treatment. Concerns about paying for MS treatment could be an added stress.
Jason is shocked by the costs of MS treatment and care.
Jason is shocked by the costs of MS treatment and care.
And I spend-- I think the catheters that I use are-- I spend $300 a month on 270 catheters. That's after my insurance benefit. Before my insurance benefit I don't even-- I don't know how much it would cost. $1,000, maybe? I don't know. It would be [astronomical]-- I already think it's too expensive. But it would be more expensive. My MRIs-- I get an MRIs in January. So, it's generally before any deductible or anything has kicked in. And those MRIs are usually $1,500 to $1,600. And it's really expensive. The only thing saving me right now is that I'm no longer taking a disease modifying therapy every year, because I had two years of a $300,000 drug. But I know when I was on Tysabri®, it was $16,000 a month. That was the before-insurance price. And it's just-- I don't know. It blows my mind how expensive this stuff is.
People talked about the role of health insurance in paying for care and had varied experiences with how well their insurance covered the services they need. Because insurance choices differ depending on where one lives and what insurance an employer offers, the need for a certain insurance sometimes influenced people's decisions about where to live and work. For Nora, switching insurance companies meant that she also had to switch neurologists. A few people discussed instances when health insurance did not cover complementary and alternative care.
Some people were happy with the choices and range of services that were covered. Dina attributed her quick MS diagnosis to “working for a place that had excellent health insurance” at the time. Some participants expressed gratitude that the 2010 Affordable Care Act meant that pre-existing conditions cannot be a justification for denying coverage.
Dina researches deductibles, copays, and specialist options during open enrollment windows.
Dina researches deductibles, copays, and specialist options during open enrollment windows.
But as a matter of fact, our insurance is going to renew now for January. So, this is part of my job this month that I've got to look at, is compare the different plans. So, it'll be one company that we'll stay with, but of course, every company has a multitude of plans from bare bones down to bells and whistles. So, I have to look and see where my coverage for appointments is going to be, and I have determined that sometimes it's better to take a lower deductible if it means my specialist visits to my neurologist or anyone else is going to be higher. So instead of being $45 it's going to be $65 because I only see my neurologist a couple of times a year. And so, if you factor specialist visits, maybe that's about $100, that's going to be a much larger savings for me than looking at what the deductible is going to be. So, I have to spend a lot of time, and I personally take that on in our family because I have some background and knowledge about it. But it is overwhelming, and if you are someone who has never done that before, my God, it could be-- you would just pick a plan and you may not actually ever know that that's the right thing that's for your coverage, for your health, for your insurance, for your prescriptions. So, I specifically go, and I look to see what the cost of the deductibles, the specialist visits, MRIs, if I'm going to be paying fully for those until a deductible, or if I pay-- not a copay, a partial payment? It's called something else. Coinsurance, that's what it's called, I think. And prescription coverage, because right now Avonex© monthly runs $6,000, which if you don't look at your information right, you could be completely screwed.
David R. stayed with his employer to maintain access to insurance.
David R. stayed with his employer to maintain access to insurance.
But that-- again, that's one of the reasons why I stayed-- I continued working for the [LOCATION] as long as I did, because back around 2001 or so, there was always that cloud hanging over my head whether or not I had multiple sclerosis. And I thought that I would be better off staying with the system with a good retirement plan and good health insurance in case things got worse. So that sort of discouraged me from, like, looking to change jobs, even in the late '90s, when I would have liked to change jobs.
Coverage of drug treatment
Most people we talked to discussed issues with health insurance covering drug treatment, including coverage denial or long wait times for approval. People also discussed changing or seeing different doctors based on who their health insurance will cover and some forgo treatment altogether based on affordability. Marquita did not initially seek medical care for her MS because she couldn’t afford it without insurance, and Maureen did not use a medication that “really seemed to help” because insurance would not approve it.
Rochelle was concerned about being without medication when she switched insurance.
Rochelle was concerned about being without medication when she switched insurance.
But the Tysabri®, I kind of look forward to going to get it. OK, I'm just going to get my medicine. And I look forward to getting it because I feel like it's going to help me get through it. I was changing insurances. Oh my God. And they were going to make me wait. Until I said, “Oh, no, no, no. No, no, no. No.” So, I got some kind of program to hold it over until my insurance kicked in, the new insurance kicked in. And I was like, thank you so much. So, then they met each other. So, it was effective. And then it took care of it. But they let me get the insurance while it was processing my other insurance. But they were getting ready to make me wait and everything. I was like, oh my God. And I was thinking in that little gap of a time, something might happen, like a relapse or something.
Other people said they spent considerable time appealing a denial of medication coverage. Jerry described this process as being a pain and wished “insurance companies would actually have some feeling.” Bianca said she felt like she spent a year of her life on the phone with her insurance company, and Jean said, “you have to keep calling. And by the time you've called the seventh time, they'll pay for it.” Some people also described having difficulty figuring out which specialty pharmacy (a pharmacy that sells medications to help treat rare and/or complex medical conditions) would accept their insurance.
Kim got insurance assistance from hospital staff.
Kim got insurance assistance from hospital staff.
So, I settled on, again, on that medication, the Ocrelizumab, and then we set up a first infusion at my home institution a few weeks later, and it took some time because it's an incredibly expensive drug. This new monoclonal antibody and all these cutting-edge medications, they are quite pricey, so it took a while to get the insurance to cover it. And I was fortunate that the Multiple sclerosis department at my home hospital had a person who's dedicated-- her role and responsibility was to get this drug approved for patients or to get drugs approved for patients, so she really went to bat for me and did a lot of that work behind the scenes so that I didn't have to, which I think is wonderful because I don't know if I would have had the knowledge to navigate that system. It's pretty complex.
Jennifer reflects on the frustrating process of getting her infusions approved.
Jennifer reflects on the frustrating process of getting her infusions approved.
I know, for me, it was a lot of just getting the approval for my Ocrevus©. I mean, it is $60,000 twice a year. So, I would tell my doctors' staff too, they'd say they'd get a pre-approval, I wouldn't hear back from them. They'd say, "It's because you didn't fill out a form," and I can point out where I did fill out the form. Then they would say, "Oh, we'll call them." I’d follow up three days later. They would say, "Oh, we couldn't get them. Do you have a different phone number?" So, I would have to call insurance. It's just that consistent back and forth. It's maddening. Every time you get diagnosed with MS, they should all give us personal assistants to help us go through the logistics of insurance and the administrative part of health care. But like I said, it's worth it at the end to get your treatments. We should all find a support group where we have happy hours on Friday for surviving the admin stuff.
Liz struggled with having to use a specialty pharmacy.
Liz struggled with having to use a specialty pharmacy.
I think probably more of the trouble comes with, because you're dealing with specialty pharmacies. You don't just go to your regular pharmacy to get these drugs. You have to deal with the specialty pharmacies. A lot of it is online or over the phone. So, I would spend more time than I would like trying to get a hold of them to get the prescription refilled and so forth. That's where the issue comes into play. I didn't have so much trouble with the insurance company, like I said. It was trying to work with these specialty pharmacies and then figuring out which pharmacy we were supposed to use for the insurance. That's another issue.
The people we interviewed described how providers who understand the insurance companies can be very helpful. Jean recounted a time when her provider staff worked directly with her insurance company to get her medication approved. Some people discussed other ways of paying for treatment in addition to health insurance. Dani, for example, used a prescription discount card to offset the costs of medications. Copay assistance directly from drug manufactures was another means to reduce cost. As Liz noted, she “would have been working forever to pay for [her copay]” if not for the copay support she received from the manufacturer. A few people discussed enrolling in a clinical trial in order to access a specific medication free of charge.
Dina encourages learning about drug manufacturer copay support.
Dina encourages learning about drug manufacturer copay support.
I know I got information from the company sent to me because they want you to stay on your drug, so they're always marketing to you, and I think that that's one way to ensure you stay on their medication is to offer copay assistance, because they want people to stay on their medication because-- for so many reasons. But I think it's more marketing. But it still helps a lot of people. And I know though, if I went into my doctor's office if I said, hey, you know, I was having a hard time paying for my prescription, there's like literature and brochures and information about call the company here, or we'll help you, we'll have so-and-so in the office connect with you, but you have to ask for that.
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So, I've never found that that's been a question anyone has ever asked me in any of my experiences with any medication. Like, will you be able to get coverage for this? Will it be covered? It's just like, here's your script, go to, and you hopefully will figure it out. Again, I think I'm savvy enough and I'm knowledgeable enough about it that I call companies and find out, but I always tell people though, when they say, “Oh, it's so expensive,” call the company. Find out if they have copay assistance. Find out if they're doing a trial where you get your first six months free or something like that. You have to ask. And that's hard, because if you're already overwhelmed with your disease, to add that onto your list of crap to do, it's one more thing to do.