Appealing health insurance denials requires attention to detail

This article was first published in the Spring 2026 edition of the IDF ADVOCATE newsletter.

Tayler Figueroa lost her job a few days before Christmas 2024. Right away, she panicked—how would she pay for her subcutaneous immunoglobulin (SCIG) replacement therapy? Diagnosed with common variable immune deficiency (CVID) in 2021, Figueroa took SCIG weekly to prevent recurrent bronchitis, pneumonia, and sinus and ear infections.

“Ig improved my life immensely. If I got a slight cold, it used to put me on antibiotics for a couple weeks, whereas now I only have the sniffles for a few days and I’m able to beat it and move on with my life and not be constantly running to the doctor,” she said.

“I’ve also found that Ig gives me general energy in my day to-day life. Overall, I’m missing out on fewer things since being on it, and I just have an overall better quality of life.”

While unemployed, Figueroa reached out to her doctor, who told her to contact the manufacturer of her SCIG. The manufacturer enrolled her in a special program that offered their product under a different pharmacy. The program covered all costs.

“It was just awesome and I was extremely grateful,” said Figueroa, 32.

By October 2025, Figueroa found a new job. She enrolled in health insurance and contacted her prior pharmacy to let them know that she was ready for them to coordinate her SCIG.

“They called back after a few weeks and said the good news is we have a new medication that your insurance will cover. The bad news is it won’t cover your prior medication,” said Fiqueroa. “I asked my doctor and he said it’s best not to switch brands, but in this case it’s better to be covered by something than by nothing at all.”

Her pharmacy followed up with the health insurance company to confirm costs. Then, Figueroa got more bad news—the health insurance denied coverage of the product they originally approved. The pharmacy, in coordination with her doctor, submitted an appeal. Finally, in mid-February, the health insurance company approved the medication.

“What a relief it was, but there was still that stress of waiting. I can’t even count how many times I got sick in between my last infusion in October until they approved it. I missed probably two weeks’ worth of work just from being sick alone. I’ve gotten a couple of sinus infections and six viral infections. It’s just ridiculous,” said Figueroa.

Figueroa’s experience is not unique. In fact, doctors and patients report that denial of coverage for medication and medical procedures is becoming more frequent. As a patient, you have the right to appeal a denial and it’s important to be thorough when navigating the process. Remember that you have limited appeals—usually one to two internal appeals, and one external appeal, so having paperwork and evidence in order is crucial.

The Immune Deficiency Foundation (IDF) outlines critical steps to follow when pursuing appeals after health insurance denials or when filing a health insurance complaint. Importantly, contact IDF if you have questions before you appeal to lower the risk of another denial, and keep written records of all interactions with your health insurance company, including names of company representatives you speak with along with dates and times. Always make copies of documents; never send original documents.

Health insurance companies deny coverage for many reasons. They might claim there is a lack of prior authorization, the care is not medically necessary care, or the medicine is not on their list of covered medications, known as a formulary.

Duke University immunologist and PI specialist Dr. Niraj Patel said he sees at least 125 cases of denials of coverage annually, which includes those who changed insurance and were subsequently denied coverage for Ig replacement therapy.

“If you include denial of coverage on product-specific coverage, it is a lot more,” said Patel.

To start the appeal process, check your explanation of benefits (EOB). On the back of your EOB, you can find the company’s procedure for filing an appeal and how long you have to appeal, generally 180 days for most companies. Verify the exact process with your insurance company.

Work with your healthcare provider to write a letter outlining support for your appeal. Include relevant clinical information such as medical records and history of adverse reactions or side effects (especially important if you are appealing denial of Ig). The letter should directly address the reasons for the denial.

The Affordable Care Act (ACA) mandates that insurance companies respond within certain timeframes: 72 hours for urgent care, 30 days for non-urgent services (which includes prior authorization for Ig), or 60 days for appeals of services you’ve already received.

If the appeal is related to a dispute over medical necessity, have your healthcare provider write a letter of medical necessity that states the medical service will:

• Prevent the onset of illness.
• Reduce or improve physical, mental, or developmental effects of illness.
• Assist or help you achieve maximum functional capacity in daily activities.
• Provide effective care because alternatives on the plan caused harm or weren’t effective.

Keep the letter short. For denials of Ig replacement therapy in particular, include practice guidelines, proof of infections, lack of response to other interventions (like antibiotics or surgery), and precise symptoms and treatments. Remember to include the names of immunologists who can offer peer reviews.

Keep in mind that before you appeal a denial, you should see if your provider will do a peer-to-peer review with a representative from your health insurance company. That meeting may prevent the need to appeal.

Patel said most of his patients make an appeal using a letter of medical necessity. When possible, he advises a peer-to-peer meeting first, but he’s observed that fewer health insurance companies are offering that option. In Patel’s experience, peer-to-peer is about 50% successful in overturning denials because many providers from the health insurance companies are not familiar with PI or Ig. With a second appeal, peer-to-peer success rate rises to about 75%, said Patel, although a decade ago it was closer to 90-95%.

Patel said some of the more frequent denials are for certain Ig products, targeted treatments like Leniolisib (designed to treat APDS), imaging such as computed tomography (CT) scans or magnetic resonance imaging (MRI), and surgical procedures for infectious disease purposes.

“We tell patients that we are working through the denial, but it causes anxiety and worry on the patient about the possible treatment or procedure that is medically necessary but may not be covered,” said Patel who advises patients to advocate for themselves and follow up with insurance companies. “Ultimately, though, and unfortunately for patients, it doesn’t always go the patient’s way.”

If your appeal is denied again, you may request an external appeal within 120 days. Check your plan to see how your state operates its external review process or if it uses the Department of Health and Human Services’ Federal External Review Process.

You also have the right to file a complaint if you think the insurance company has broken state or federal law, ignored their own rules, or implemented an unfair practice. For complaints, contact your state’s insurance commissioner or the Department of Labor’s Employee Benefits Security Administration (EBSA).

Figueroa said appealing insurance denials is frustrating and she believes treatment choices should be between patients and their doctors.“All the insurance companies are looking out for is their own financial gain. We should allow our doctors to be the ones making these decisions and not having to fall back on the insurance companies who are all about playing the money game,” said Figueroa.

“The whole process is just super isolating. It feels like you’re the only one in the world going through it, but you are not. My advice is to reach out, whether that be to your pharmacy, or your doctor, or IDF, just to get that support. Find an open ear because that’s what I did and it helped a lot.”