S3:Ep1 – Tips and Resources for Navigating Health Insurance


Topic Recap:

  1. Biggest challenges navigating insurance 2:15 – 6:00
  2. Resources: Migraine Matters Program & Financial Assistance Guides 6:45 – 8:35
  3. Getting a case manager 12:25-13:30
  4. Tips for Dealing With Your Insurance Company and Provider 13:50-18:45

Helpful Links

Migraine Matters Program

Migraine CareLine

Financial Assistance Guides

File an insurance complaint


Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you by our generous sponsor, Lundbeck.

Living with migraine can take a financial toll but Caitlyn Donovan of the Patient Advocate Foundation and Katie Golden of CHAMP are sharing their tips and favorite resources for navigating insurance and treatment access for those who live with chronic pain.

Lundbeck is a global pharmaceutical company that is committed to improving the lives of people living with brain diseases. Lundbeck is pleased to offer a treatment option for migraine prevention. To learn more, visit LundbeckUS.com.


Molly O’Brien: Hi there. I’m Molly O’Brien, with the Association of Migraine Disorders, and this is Spotlight on Migraine. Thank you all so much for joining us.


Many of us living with migraine understand the challenges of the disease itself but also how we approach treatment, insurance, and all the options out there. Sometimes it can be really challenging. So today we’re going to help you along the way, and we have two experts in their fields joining us. I’d like to introduce Caitlin Donovan, with the National Patient Advocate Foundation, and Katie Golden, with CHAMP. They both live with headache disorders, so they both understand this personally, but then they also work in the field and are experts in navigating insurance.


So hello and good morning to the both of you.


Caitlin Donovan: Good morning.


Katie Golden: Good morning. How are you doing?


Molly: Great. So excited to have this conversation today. So the goal is really to try to help people out there who live with migraine and headache disorders not feel so much burden when they’re trying to wade through pretty much everything. So we’re going to get some tips from you all, and we’re going to hopefully take advantage of all your knowledge today.


So let’s get started here. From your experience as a patient and an advocate — and I’ll open this question up to the both of you — what do you think the biggest challenges or hurdles or obstacles that patients with migraine face when they’re dealing with insurance and getting treatment coverage?


Katie: I would say is, one, just understanding the lingo of insurance, understanding the difference between your premium, which is what you pay monthly, versus a deductible, which is what you pay over the entire — the amount you have to pay out of pocket during that year, and co-pays, which is what you pay when you go to the doctor’s office. And there are a lot more.


Caitlin: Well, Katie’s absolutely right. I mean, the system’s not set up to be easy, and anyone who’s gotten on the phone with their insurer for 10 minutes knows it. And it’s really hard to know the difference not only between all of the different types of ways you’re paying, but also what you’re supposed to do when something goes wrong. And there’s differences between prior authorization and your deductible. And why are you getting turned down? Half of the mistakes that we see in bills are because the provider never billed the insurer to begin with. They just send it right to the patient.


And so one of the biggest tips we have for all patients, whether it’s migraine or something else, is just to wait for your EOB, because that will tell you that your insurer received your bill. Then they’ll often tell you if something went wrong. It’ll be right there on the bill, and you can check to make sure it lines up with what your provider is charging you.


Katie: Yeah, because sometimes we all get a bill in the — well, it looks like a bill in the mail from your insurance company. You look at it, and it’s like, “That was $10,000 for the visit for injections? Oh my — I’m not paying that!” But it’s really just — it shows the entirety of the cost, and then you usually pay a co-pay, so it could be a lot lower. But, yeah, having that explanation of benefits [inaudible] insurance, says um, we’re not paying the 10,000, but you can go to bat.


Caitlin: So as far as the appeals and people navigating the insurance process, once we get past bills sent by mistake or bills with errors in them, one of the biggest reasons for denials that we see is under this umbrella of medical necessity. And having your doctor there to help you with that type of insurance appeal is really important because they’ll be able to cite your medical history, cite other treatments that you’ve tried that haven’t worked for you or allergies you have, and they can also reference leading medical journals that will bolster the validity of their prescription or treatment plan.


So case managers will work to get that type of letter written and submitted on time, but also aware of deadlines and other issues that might come up. People with migraine or other headache disorders will see this from time to time — medical necessity and then prior authorization, which isn’t technically a denial, but it is certainly a barrier. And being aware, you might see something before you get treatment where you’re being flagged that they’re not going to cover that treatment because of prior authorization. That’s just something where you need to circle back to the doctor and have that paperwork taken care of.


And then you might get a denial after the fact, and that may take a little bit more work to get them to cover it and to pay for it, but it is ultimately worth it. Our case managers are persistent, and they usually do work very effectively to get these things covered for patients.


Molly: Great. Well, thank you both for sharing those. As we’re kind of talking about the EOBs and the cost and whatever, I can feel my anxiety rising because I know exactly what it feels. So we’re hoping we can help prevent that anxiety rise when you do get your EOB or when you do get a bill. So that’s why we have you two ladies today, to help prevent that.


So people might not know this, but there are tons of resources out there to help deal with insurance, navigate it, figure out what’s going on. So I didn’t know how many resources there were out there, so I’m learning myself. So we hope to educate all of our listeners as well.


Can both of you share maybe one or two of your favorite resources that you share with people who have migraine?


Caitlin: I would love to talk about Patient Advocate Foundation’s Migraine Matters site, if you go to PatientAdvocate.org/MigraineMatters. It’s a collection from all different organizations of everything you might need, from how to appeal something if you get denied to even a glossary of terms. We have a webinar on there. We have templates that you can use so that you don’t have to kind of be dealing with a migraine while trying to write an appeals letter.


It’s a really good resource, and you can click right from there to a form that you can fill out to get a case manager that you will qualify for because you have migraine, who will help walk you through all of that and do some of it for you.


Molly: Katie, do you have any other resources that you like to share with friends or fellow migraine patients?


Katie: So another resource — we all know that a lot of new migraine and medications have come onto the market, and they’re a little confusing, and each different pharmaceutical company has different savings programs. And so on CHAMP’s website, there is financial assistance guides. So if you’re looking for a specific drug, it will tell you exactly the steps that you need to take in order to get — and it’s usually very easy — to get a savings card so that even if your insurance does not cover the medication that you’re looking for, for a period of time, the manufacturer, the pharmaceutical company, will cover the cost, or you may have to pay five or ten dollars, and they’ll do that for a certain amount of time. So financial assistance guides on CHAMP — very helpful.


Molly: Dealing with the cost of migraine can be challenging, but, Katie, you actually have a great strategy and a tool that you use to help navigate cost.


Katie: Yes. So tracking the cost that you pay out of pocket over the year can actually help you tremendously on your taxes. So I believe the rule is that if you pay more than seven-and-a-half percent of your adjusted gross income in medical expenses, anything over that seven-and-a-half percent you can deduct.


So for me, I have an Excel spreadsheet. So all of my co-pays go in one column, all of my — even acupuncture or yoga classes — I mean, because that is taking care of me, and that is my health. Or your deductible, your premium, anything that you can think of. Over-the-counter medicines. Mileage going to a doctor’s office, especially if you have to travel really far. You can add all those together, and either it will help you to pick — it will either help you to be able to see if you can deduct those for tax purposes, or it’ll also help you to figure out what plan you need to be looking at for the following year.


Molly: Now, Caitlin, you had also mentioned earlier on that creating a budget for yourself or a financing plan, kind of — planning ahead was a good strategy for you, and how Patient Advocate Foundation also helps. Can you share a little bit with us about possible financing programs or things out there that Patient Advocate Foundation helps with?


Caitlin: Well, we have financial assistance available for a lot of different disease areas, including migraine. And, frankly, most people have more than one disease area at this point. So it’s worth checking. Different co-pay relief and financial assistance are always opening and closing, depending on the time of year.


But I can tell you, on average, our case managers usually bring back almost $7,000 to patients they work with between direct financial assistance and then programs and benefits they get them enrolled in. I mean, that’s a very conservative estimate. I can tell you that our data people always err on an extreme caution, and it’s devastating to me because I like big numbers, but.


So that’s a really good resource, and Katie was absolutely right talking about the importance of picking your plan with open enrollment coming. We have new worksheets available at NPAF.org that you can print out and kind of go through your plan. Is your neurologist and network here; is he not over there? What about your primary care provider, your drug benefits, everything? And it kind of lets you pencil it out.


And then being aware of your plan year and kind of getting crafty with your finances. If you know you’re going to hit your deductible, maybe planning a big expense for after that so that you can not spend as much money. These are things to think about.


And it takes a lot of time. It’s frankly not fair that patients have to spend this much time just to not wind up in extreme medical debt when they’re insured. But that’s the system, and that’s a different conversation, probably, for a different day.


Molly: Caitlin, I want to stick with you. You have talked a lot about case managers or advocates. Can you tell us a little bit about how someone out there might go and acquire one? How do you find out if you are eligible? Do you have to be eligible? How can we get a case manager in our corner?


Caitlin: If you have migraine, you’re eligible. So just go to PatientAdvocate.org/MigraineMatters, and you can click right there for a case manager or the general case manager line. They are amazing. I know I sound like a cheerleader, but I can’t tell you. A lot of them have nursing backgrounds or social work backgrounds, and they’ve been with us — one of them for over a decade, and they’re just experts at navigating the system and getting it done for people. And while they’re doing it, teaching you how to do it for yourself, which is really one of the most important aspects of the whole program.


Molly: And is that free? It almost sounds too good to be true.


Caitlin: It is. We’re a charity, so it is free. You have to be receiving care within the US, but it’s a great, great program. I wish there was one in every state.


Molly: Yeah, no kidding. Having someone on your side, someone in your corner so — we all know we need to be our own best advocate, but it’s always helpful to have someone on our team.


Caitlin: Yes.


Molly: I’ll open this question back up to the both of you, as we kind of wrap things up here. You’ve given us a lot of great advice, told us about resources. But what’s one or two hot tips you have for people when they’re trying to navigate the world of insurance and living with migraine?


Katie: You can write to your state insurance commissioner, which — I know this is another step, and it is a lot, but if you’re really having trouble with your insurance company, you should send out a letter to your state insurance commissioner. And the Headache and Migraine Policy forum has really great info on that.


It’s hard to say, “Be persistent,” because it’s exhausting going to the doctor’s office or having a procedure done, let alone fighting, but just keep at it. I was trying to be admitted for an inpatient infusion, and it took me an entire year to get the final approval. But once I did, it’s been the — actually, the treatment I was looking for was really, really fantastic, and so I’m glad that I did it.


Cailin: Well, Katie gave the big overview. I’ll go granular again, which is to say that often the best advocate you can have outside of yourself and someone who loves you might be the people in your physician’s billing office. If you can get them on your side and helping you, especially if you’re going through appeals or prior-auth issues, they can be a great resource for you and a really great defender of you. So make sure you’re giving some face time there if you’re running into problems.


And the other is once I get past debt and billing issues, the number one question I get asked is “How do I get my doctor to listen to me?” And I think especially when we talk about pain and, frankly, women and people of color and pain, that becomes an even bigger issue. So a very simple message — and it’s not guaranteed to work, but it’s something to try. And we call it “Say it first, say it twice.” So think about the first thing you want to say to your provider, what’s the most important thing, and have it be the first thing you say when she walks in the room. And then go back over it again, and make sure you’re on the same plan.


And that can also be talking about cost worries and how those might be affecting your treatment, because that’s — part of your treatment plan is any cost problems. And making them aware of that and having a conversation about how you can modify your treatment plan to address those cost concerns is really valid, and you should do it.


Katie: Yeah, I would just add to that is I always try to send my doctor, through their web portal or email or whatever, just a list of questions that I want to go over in our visit so that it can be more efficient and just in — a lot of doctors don’t know the ins and outs of insurance because they have amazing back-office people who do that. So talking to the doctor about it is fantastic, and they might say, “Well, I’m going to walk you over to so-and-so.” And, yeah, make best friends with them.


Caitlin: Advocate for yourself like you would for your child. I think we’re kind of hesitant to speak up for ourselves, especially when we’re going up against the medical profession, sometimes, because they’re experts. But you’re an expert too. You’re a patient, and you know what you’re experiencing, and you have, as you go through this, an increasingly better idea of what will work for you.


I can tell you the first year I had cluster headaches, I figured out eventually that oxygen is what worked for me. And at some point, I had to switch insurers, and they were taking forever to approve home oxygen. And I wound up in the ER three times in a week, and I called.


And so one of the best tips I can tell you is learning to ask the direct question “What do I need to do to get this approved?” And when I asked that, I remember the person on the other end of the line said, “Oh, well, we have to make sure that CMS has approved this for Medicare. That’s how we do it, and it can take a while.” And I was on the phone with him, and I googled it, and I said, “I’m looking at CMS right now. They do.” And he was like, “Oh,” because he was caught. And within a day, I had the approval.


So sometimes asking the direct question, being persistent, and if you’re with a person, sometimes our best trick is to hang up and wait 10 minutes and call back again, because if you get a different person, you might get a different response.


Molly: Ooh, that is a hot tip. Excellent options out there for you. Thank you for sharing.


And we’re wrapping up things here on Spotlight on Migraine. I hope you enjoyed the conversation. I sure appreciate our guests today, Caitlin Donovan, with Patient Advocate Foundation, and Katie Golden, with CHAMP. Thank you both so much for being here today.


Katie: Thank you.


Caitlin: Thank you.


Katie: Appreciate it.


Molly: It was so great to see you and get some advice.


If you want more information on this or other subjects in working with migraine, you can go to our website at MigraineDisorders.org. Thanks so much for joining us. Once again, my name’s Molly O’Brien, and we’ll see you next time.

Voice-over: Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

This podcast is sponsored in part by Lundbeck.

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.