Tips to Navigate Insurance Barriers in Rare Neuroimmune Disorders

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For families navigating rare neuroimmune disorders, one of the toughest challenges isn’t just managing symptoms — it’s getting treatments covered and approved. From prior authorizations to infusion access, the process can be overwhelming and full of roadblocks. Experts at UT Southwestern, including nurse coordinator Denise Maddox, RN, BSN, MSCN; advanced practice provider lead Paula Hardeman, DMSc, MPAS, PA-C; and licensed clinical social worker Katherine Chapman, LCSW, CRND, share practical tips to help patients and caregivers better manage insurance hurdles, strengthen appeals and advocate for timely access to needed therapies.

Many patients with rare neuroimmune disorders face delays due to prior authorizations. What are some practical tips patients and families can use to make this process smoother?

Denise Maddox, RN, BSN, MSCN: I always tell people to get a case manager with their insurance. They cannot usually approve/deny medication, but they can help us track where it is in the system, which is huge!

Paula Hardeman, DMSc, MPAS, PA-C: I agree. Getting a case manager with their insurance can be extremely helpful. Also, some states have laws to help speed up the process, so being familiar with those laws can be helpful and sharing with their provider (some providers may not be aware). For instance, I was told that Virginia has laws that prevent insurance companies from requiring step edits (the need to try and fail certain therapies first before covering the requested therapy). Also, if you are changing providers, make sure your current provider has your complete medical history, especially previous drugs that have been tried and all diagnostic testing. Insurance will frequently request this information.

When a medication or infusion is denied, what steps can patients take to file a successful appeal?

DM: We are usually the ones filing the appeal, but I have them do a couple of things along with the case manager. Write a personal letter about their experience with the diagnosis — never hurts to get that perspective. We file that with our appeal. Sometimes (though it’s rare), if they have private insurance, they can speak with their HR person and ask them to advocate for the medication on their end. If the company is really large, they won’t always do it, but sometimes the smaller businesses will.

I try not to have families call their insurance too much because it can actually interfere with what we have pending. Insurance will also often tell them something that is completely opposite of what they tell us, so they get frustrated and so do we. If we have done everything on our end, I’ve also had patients go to the Texas Board of Insurance and see if they will review the case — if it’s Medicaid, that is much more challenging. But once you get to an external appeal, that’s when you typically get a neurologist outside of insurance that reviews the case. Normally we get an approval when it gets that far. That can be true with private insurance as well.

PH: Along those same lines, some insurances will allow a third-party review or appeal, which can be extremely helpful.

Beyond insurance, what other barriers to care do patients often face — and how can they prepare to overcome them?

DM: Cost! These are high-dollar medications. I do pediatrics, so 99% of them are not U.S. Food and Drug Administration (FDA) approved. And a lot of them we can’t get patient assistance from the manufacturer because they are under 18. So we fight like crazy to get insurance to approve.

Language can also be a barrier. Even with interpreters, we find that some of our Spanish-speaking families either don’t understand the plan or don’t follow the plan. So if you are doing a medication that has a lot of labs or steps to follow, it can be very challenging!

PH: Also, access can be a barrier, especially for patients going on an infusible drug and who live in a rural area. Or some infusions can only be given by infusion centers who have been trained on the drug, so not all infusion centers can infuse all drugs. Also, some patients do not live in the same city as their rare neuroimmune specialist, so when rehab or PT or imaging is needed, the specialist may not know where to send orders. Having a good primary care provider or a local neurologist can be very helpful in these situations.

How can patients advocate for themselves if they encounter difficulties accessing infusion therapies locally?

DM: Thankfully I haven’t had a big issue with this. I have enough infusion companies I work with that I can usually find someone that will handle it. I do encourage families to let me know about the issues they encounter with the infusion center, with the cost of the med, etc. That way if I have resources, I will do my best to help them.

Katherine Chapman, LCSW, CRND: I’m not involved in this, but I used to be for the appeals. I would just add that I know our doctors are happy to talk with other providers who might be struggling to get approval and could perhaps provide guidance with current study information and/or experience. Patients could ask the SRNA for a recommended provider in their area for their provider to contact.

PH: Understand your insurance plan. Your insurance plan may not be in-network with an infusion center and will deny medications based on infusion location. But if you get infused at an in-network or preferred infusion center, then insurances will cover the medication.