Access to Care for Patients with Multiple Sclerosis

EP: 1.Diagnosis and Management of Multiple Sclerosis Today

EP: 2.Treatment Adherence and Comprehensive Care in Multiple Sclerosis

EP: 3.Multiple Sclerosis Journey: Peer to Peer Support

EP: 4.Multiple Sclerosis Journey: Sharing Experiences

EP: 5.Resources for People Living with Multiple Sclerosis

EP: 6.Resources for Patients with Multiple Sclerosis and Physicians in Post-COVID Era

EP: 7.Shared Decision-Making in Multiple Sclerosis

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EP: 8.Access to Care for Patients with Multiple Sclerosis

EP: 9.Advice for People Living with Multiple Sclerosis

EP: 10.Advice for Physicians and the Multiple Sclerosis Community

June Halper, MSN, APN-C, MSCN, FAAN: Thirteen years ago, as of yesterday, was the anniversary of the Affordable Care Act. Have you noticed any challenges within the community as far as insurance coverage or changes that may have occurred since that act was put into place?

Craig Mainor: Yes.

June Halper, MSN, APN-C, MSCN, FAAN: Thank you, President Obama.

Craig Mainor: In my 9-to-5 job, I run a nonprofit in Newark, New Jersey. We focus on those who are experiencing low income or poverty. Some are homeless, some functionally homeless. What I have noticed is that there has been a more purposeful effort to find medical assistance with that population. There are some FQHCs [federally qualified health centers] that have sprung out, and I believe it’s directly related to the open insurances, the open outreach to folks to find and be covered with medical insurance. I think it’s a great thing. There’s now a focus on food insecurity, which also has its own connections with the health disparities in some of these communities. I think it’s been really positive. And I was aware that yesterday was the anniversary.

June Halper, MSN, APN-C, MSCN, FAAN: It was a wonderful anniversary. Dr Picone, I know the center we founded so many years ago, we provided care regardless of ability to pay. That continues, but have you noticed any changes since Obamacare [Affordable Care Act] came along?

Mary Ann Picone, MD: Insurance has always been a big problem. With patients now, since the Affordable Care Act came about, being able to get more access to some health insurance, that’s been helpful. I think a lot of people don’t know how to navigate some of those resources because it’s overwhelming, how to understand which is the best insurance, trying to get coverage for their medications. We’ve had to hire a prior authorization person just to be able to help patients get coverage. So many people need assistance with trying to get an insurance plan. “Which is the best insurance for me, will my medications be covered? What if I lose my job, how am I able to still afford my therapy?”

We don’t want patients not taking their medications properly. Some patients have skipped their therapies. For example, a medication that should be taken on a daily basis, some people come in and say, “I’m only taking it every other day because this way I’ll be able to spread my doses out, because I’m afraid I might not have coverage that last month of the year.” We try to get patients to understand too, some of the other benefits they may have available to them, like co-pay assistance through some of the pharmaceutical company programs, other financial assistance programs, sometimes grants through organizations like MSAA [Multiple Sclerosis Association of America]. But it really is a challenge. The worst thing I hate to hear is someone not being able to get started on a treatment because of financial issues. But that is a challenge, and with some of the insurance companies, we argue with them all the time. Because MS [multiple sclerosis] is so different, someone told me one time, when you treat a patient with MS, you treat 1 patient with MS, because everybody is so different.

June Halper, MSN, APN-C, MSCN, FAAN: Absolutely.

Mary Ann Picone, MD: One treatment that may work for one patient may not be the best for someone else. But insurance companies often will say no, they have to start on this particular therapy first before they can go on the one that’s actually the best for them. But what happens is that their disease gets worse. If they’re not on the proper therapy from the beginning, or if they can’t make a change when they need to, you run the risk of the disease worsening. In the long run, it can cost a lot more to the total health care system than being on the proper medication from the very beginning. So, we really do try to, and Gina can talk more about this, work with organizations.

June Halper, MSN, APN-C, MSCN, FAAN: You opened that door, Gina, by putting people in the room together, right, with your program?

Gina Murdoch: We did a unique series, we just completed the second part of it, to give the opportunity for amazing health care providers like Dr Picone. We did it regionally across the country, where we had MS neurologists sitting in a room, or virtually during the pandemic, having conversations with representatives from the insurance companies. We had an opportunity to sit down and have a moderated discussion on the challenges the health care providers were seeing with getting the person on the right medication at the right time. The right person, right medication, right time, which is what we all want for everyone. It was about the burdens on the health care providers. You talked about hiring somebody else to deal with the prior authorizations, dealing with the step therapy, all of that. It was an interesting opportunity to bring all of those people who don’t necessarily have that opportunity to share their pain points and their concerns and have the health care providers bring forward their challenges and the stories of their patients who can’t get on a medication, or are having trouble with it, or going through that onerous process. It was interesting to see the “ahas” that came out of that.

There’s a white paper on MSAA’s website as a recap from that first series. But it is an opportunity to say, “Do you understand what the impact is of policies on patients?” That was the crux of the conversation. And we didn’t solve it, I don’t think anybody is going to solve it. But the fact that they had conversations and they learned from each other, they walked away, and one of the overwhelming responses was, “We want to keep talking.” That was in our minds a win because they had the conversation, exchanged ideas, and want to continue having those ideas. And conversation leads to change. So, we’re glad that we convened those conversations and that everybody wants to continue having them.

Transcript edited for clarity