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What Are My Options if Insurance Denies My CLL Medication?

What Are My Options if Insurance Denies My CLL Medication?
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Published on April 26, 2021

How to File an Insurance Appeal if Cancer Medication Is Denied

When Jennifer Abraham was diagnosed with chronic lymphocytic leukemia (CLL) in 2013, she considered taking out a home equity line of credit to pay for the $10,000-a-month medication her doctor recommended but her insurance company had denied. The 48-year-old single mother ultimately opted for a second-choice drug because she felt it was the best financial decision for her family — even though it was less than ideal for her health. Jennifer remembers it as the most difficult decision she faced during her CLL diagnosis.

This story is not unique. On top of dealing with a life-altering cancer diagnosis, CLL patients often face complex financial decisions, too. If a health insurance company rejects the provider’s recommended treatment, patients are left paying out-of-pocket or choosing a potentially less effective medication.

“About 30 percent of the oncology pipeline is now moving into oral treatments, but oral medications are expensive,” said Dan Sherman, financial navigator and founder of The NaVectis Group, in a recent interview with Patient Power co-founder Andrew Schorr.

“Depending on what kind of health insurance system you're in, it may or may not develop into a problem for the patient,” Dan added.

Why Do Health Insurance Companies Deny Cancer Medications?

Each health plan maintains a list of preferred prescription drugs that they agree to cover. This is called a formulary, or drug list. It helps insurers minimize their costs by finding the least expensive medication that is safe and effective. If your oncologist prescribes a medication that is not on the list, your insurance provider will likely deny it. You can still choose to take the drug, but you will have a higher copay or pay the retail price out-of-pocket.

Your health insurance company may also deny your request if the U.S. Food and Drug Administration (FDA) has not yet approved the medication for marketing. While the FDA approves experimental drugs for testing in humans, and in some cases for “compassionate use,” your insurance company is unlikely to cover the cost of these drugs until the FDA approves them to be advertised, sold, and prescribed — even if a drug shows promise in CLL clinical trials.

In the case of experimental drugs, also called investigational drugs, it is possible to bypass your insurance company and access them by enrolling in a clinical trial if you qualify. In other cases, when the drug is FDA approved and available for use but is not on your plan’s formulary, you have the right to appeal.

“Individuals who have commercial insurance, insurance through their employer, or if they're in the Affordable Care Act and have insurance through that system, usually there's not that much difficulty in getting the drug,” Sherman said. “Now, if it's not on the formulary or if it's not FDA approved, we're going to be running into problems. But generally speaking, from a financial standpoint and access to care standpoint, we run into problems when we have Medicare beneficiaries who are enrolled in Medicare Part D and do not qualify for a low-income subsidy. And so, the out-of-pocket responsibilities that you have in that system could be very significant.”

Five Steps to a Medicare Appeal

If you are enrolled in Medicare Part D, and Medicare denies your CLL treatment, there are five steps to the appeal process. You must follow the order listed below.

  • Level One: Redetermination from your drug plan. You must submit the first appeal within 60 days of the date that Medicare denied your coverage. Level one is a written appeal asking the plan to reconsider its decision. You can submit the appeal, or your doctor or another prescriber can submit it for you. If you disagree with the outcome, you move to the next step.
  • Level Two: Reconsideration by Independent Review Entity (IRE). You must submit the second appeal within 60 days of the date of Medicare’s redetermination decision. An IRE is an outside organization that contracts with Medicare to handle the second appeal level. If Medicare denies your first appeal, they will send you a form to use for level two. Follow the instructions to appeal to the IRE.
  • Level Three: Decision by the Office of Medicare Hearings and Appeals (OMHA). You must submit the third appeal within 60 days of the IRE’s decision. The IRE will tell you where to send your request for a hearing with an administrative law judge. During the hearing, which the OMHA will conduct by phone, video, or in-person, you (and your doctor) will have a chance to explain why you believe Medicare should pay for the treatment.
  • Level Four: Review by the Medicare Appeals Council (MAC). You must submit the fourth appeal within 60 days of the OMHA’s decision. Then, follow the instructions you receive from the judge in level three to submit your request to the MAC.
  • Level 5: Federal District Court Judicial Review. Your case must meet a minimum dollar amount to qualify for this last appeal level. In 2021, the amount is $1,760. You must submit this appeal within 60 days of the MAC’s decision. Follow the instructions you receive during level four to submit this request.

To learn more about the Medicare appeal process, visit

How Can I Appeal Through My Insurance Company?

If you are not enrolled in Medicare Part D and your insurance company denies a claim, they are required to explain their decision and your options for appealing. Each insurer has its own appeal process, but there are generally three phases:

  • Informal Appeal: In some cases, you can successfully resubmit your claim by providing additional supporting information from your oncologist.
  • Internal Appeal: If resubmitting your claim is unsuccessful, you will need to file a formal appeal. Keep detailed records of everything, including dates, names, and conversations you have with your insurer about the denial.
  • External Appeal: If your insurer denies your internal appeal, you may qualify for an independent review by an organization not affiliated with your health insurance company.

It is critical to follow your insurance company’s specific appeal process. Start by calling your insurer and asking how long you have to file an appeal. Then find out what steps you need to take. If you need help navigating the process, assistance is available.

The Emerging Role of Oncology Financial Navigators

If you have questions about paying for CLL treatment or navigating the insurance appeal process, you are not alone. There is such a need for help in this area, that trained financial navigators dedicate their careers to helping patients with cancer avoid financial toxicity.

“I have a full-time job doing this,” Sherman said. “And I have a whole bunch of colleagues who have full-time jobs doing this. That means that there's more than just you who is having a problem. This is a systemic problem that we're dealing with. A lot of people need the help.”

Sherman recommends starting with your oncology practice or program if you need help from someone who specializes in managing the costs of cancer care. Ask if they have a financial navigator or financial advocate on staff. If not, ask to speak with a social worker. Cancer is expensive, but help is available.

To learn more, watch: How Can CLL Patients Access Help and Avoid Financial Barriers?

~Suzanne Mooney


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