If you are living with spinal muscular atrophy (SMA), you’re likely aware of the high costs associated with managing and treating the condition. In fact, health care costs for people with SMA can total 50 times more than the health care costs of those without this condition.

Therefore, it’s financially imperative to follow up on every health insurance claim to ensure that your payer isn’t denying or withholding payments for the medical visits, treatments, and supplies that allow you to live your best life with SMA. If you come across an insurance denial from your private insurance company and find that a service or item was inappropriately denied, it’s in your best interest to appeal the denial.

Before you can appeal an insurance claim denial, it’s important to understand what types of denials you might face, where to send your appeal, and what should be included in it.

Understand the Denial Types

In many cases, you might need to fight denials for proposed treatments and medications, but you could face other types of denials as well. Insurance plans can consider claims for:

• Supplies, like power wheelchairs
• Services, like physical therapy
• Surgeries for such issues as scoliosis
• Assistance from aides or caregivers

Understanding the specifics of your policy will help you get a handle on what should be covered — and therefore what you should do if a covered service is denied.

You should understand the specifics of your policy, which include:

• What your deductible is — This is how much you have to pay to your providers before insurance kicks in
• How much your copays are — These are your portions of the charges
• Which health care providers are in your network

Knowing these details will allow you to catch denials quickly when you read your explanation of benefits (EOB), which is the document that insurers send you to tell you if a particular service or item has been approved, denied, or partially paid.

If you read your EOB and find that you’re facing a denial that you don’t understand, your first step is to call the payer and ask what happened. They can tell you the specific reasons for the denial, which could include one of the following, among others:

• The item or service is deemed “not medically necessary,” which means the insurer doesn’t believe you need it.
• The service or item is considered experimental and is therefore not covered
• You are seeking services or items from an out-of-network provider, meaning that they don’t participate with your insurance plan.
• You’ve exceeded the frequency guidelines, meaning a particular service (such as physical therapy) is covered a certain number of times in a particular time period, and you sought more than that.
• Another insurer is considered primary — this means that you have more than one payer, and the primary insurer must pay the claim first, after which your other insurers will consider paying the remaining charges.
• The item or service is not covered at all by the insurer.
• The provider made a coding mistake when submitting your claim — this means that they may have entered the wrong procedure or diagnosis on your claim, which led to an inappropriate denial.

Because the reasons for denial can span such a wide range of issues, it’s imperative to understand exactly what prompted your denial before you can consider appealing. If, for example, the item is deemed not medically necessary, you could work with your physician to write an explanation of why that item will help ease your SMA symptoms. However, if an item or service is always considered noncovered, you may not face much success in appealing.

Working With Physicians To Appeal Medication Denials

The three SMA medications approved by the U.S. Food and Drug Administration (FDA) are among the most costly drugs in the world. Because these medications — Spinraza (nusinersen), Zolgensma (onasemnogene abeparvovec-xioi‎), and Evrysdi (risdiplam) — are so expensive, insurers may need more information beyond an initial claim before they’ll pay for the drugs.

“I received my denial call from the insurance company yesterday for Envrysdi,” one mySMAteam member wrote. “So now the appeals process. I hope it doesn't take long!” Another said, “I was afraid to be at the mercy of the insurance companies. I had to jump through that hurdle. I changed insurance companies and thankfully, they approved it.”

If your claim is denied for these medications, your first step is to find out why. Next, you should contact your physician with that information. The doctor may be able to appeal on your behalf. If the issue was a coding error (for instance, the physician entered the wrong diagnosis code on your claim), they can fix that and resubmit it. If the problem involved a medical necessity denial, the physician can write a letter explaining why you need the medication.

The same is true for denials linked to treatments, supplies, or office visits. Your physician can talk to your insurer and support the medical necessity for things like a breathing support device or a wheelchair.

How To Write an Appeal Letter

If your physician’s office isn’t able to file your appeal for you, you can write an appeal letter and submit it to the payer on your own. Make sure you know who should receive the letter (ideally the name of the person in charge of claims for your area, or at least the department that should receive it at your insurance company) and that you understand the deadline for appealing. Most insurers will only accept appeals within a certain time frame following their initial claim decision.

When you write your appeal, include a copy of your denial (the EOB you received) with the claim. If it doesn’t list your insurance member ID number, include that in your letter, or send a copy of your insurance card.

Keep the letter brief if possible, and include the facts that would help the payer reconsider paying your claim. In addition, include any details from your policy’s coverage guidelines to support your claim. Here is a sample letter:

“Your May 1, 2021 denial for a motorized wheelchair indicates that the wheelchair is not medically necessary for my condition, but my policy (attached) clearly states that motorized wheelchairs are available for people who have no mobility, and my physician has written an order (attached) stating that I have no mobility. In addition, I have attached letters from two other physicians who independently evaluated me and determined that I require a wheelchair to perform any daily functions. Please consider paying this claim as part of this appeal. I look forward to hearing from you soon.”

You can write the letter, or someone can write it on your behalf. Anyone who knows about your medical condition can write your appeal letter with your authorization.

Maintain All Documentation

It’s important to retain copies of everything you submit to the insurer, including:

• Your EOBs
• Your physician’s statements of medical necessity
• Your appeal letter
• Any policy documents you submit
• Any other supporting materials

Don’t hesitate to ask your health care team for assistance in submitting documentation that would support your appeal. They are familiar with the appeals process and are usually happy to provide whatever assistance they can in helping you get the services and items you need to treat and manage your SMA.

Just as you have a deadline for submitting an appeal, insurers have deadlines for when they must respond, so be aware of what the deadlines are and always follow up when necessary. In addition, if your insurer still denies the claim, you can request an external review, in which an independent third party reviews the situation and makes a determination.

Share Your Thoughts

On mySMAteam, the social network and online support group for people with spinal muscular atrophy, members have discussed facing insurance denials for treatments and supplies.

Have you had success appealing a claim? Join the conversation today to share your experiences and connect with others on mySMAteam.