Navigating insurance denials for Dravet medications

Written by Annie Tye, PhD | Last updated June 4, 2026
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Getting the treatment your healthcare team recommends can feel overwhelming when insurance barriers get in the way. If you’ve received a denial for a Dravet syndrome treatment, you’re not alone. Insurance denials for epilepsy drugs are common, but they can be appealed.

Understanding why denials happen, how the appeals process works, and what support programs may be available can help you take the next steps toward accessing the treatment you need.

Understanding prior authorization and step therapy

Prior authorization and step therapy are common requirements that insurance companies use to manage prescription drug coverage.

Prior authorization for Dravet medications means your insurance company must approve a medication before your pharmacy can dispense it to you.

Step therapy requires you to try one or more lower-cost treatments before your insurer will cover a more expensive medication.

Many states have step therapy exception laws that may allow your doctor to bypass these requirements if they can document that alternative treatments are medically inappropriate for you.

If your insurer denies coverage, review the denial letter carefully. Insurance companies must explain the reason for the denial. Common reasons include:

  • lack of medical necessity
  • formulary exclusions
  • step therapy requirements
  • incomplete documentation

Understanding the reason for the denial can help you and your healthcare team decide on the next steps.

How to write an effective letter of medical necessity

A letter of medical necessity (LMN) is an important part of many insurance appeals. Written by your neurologist, the letter explains why a specific treatment is medically necessary for you and why other treatment options might not be appropriate.

A strong LMN typically includes:

  • details about your diagnosis, seizure types, and seizure frequency
  • information about treatments you have tried and how well they worked
  • clinical evidence supporting the use of the requested treatment in Dravet syndrome
  • potential health risks associated with treatment delays or denials

The letter should be detailed and specific. The more directly it addresses the insurer’s stated reason for denial, the stronger your appeal may be.

Supporting documents can also help strengthen your case, including:

  • seizure diaries
  • medical records
  • emergency room records
  • hospitalization records

A sample LMN for Dravet syndrome can be downloaded here.

Working with your neurology team on appeals

You do not have to navigate an insurance appeal alone. Your neurology team has likely helped other families through similar situations and can provide guidance throughout the process.

When appealing insurance decisions related to Dravet syndrome treatments, timing is important. Most insurance plans have deadlines for filing internal appeals, often within 30 to 60 days of the denial date.

Your neurologist may be able to request a peer-to-peer review on your behalf. During this process, your doctor speaks directly with the insurer’s medical reviewer to explain why the treatment is medically necessary. In some cases, this can resolve a denial more quickly than a written appeal.

If your internal appeal is unsuccessful, you might have the right to request an external review. During an external review, an independent third party evaluates the insurer’s decision. For many health plans, this right is protected under the Affordable Care Act.

Throughout the appeals process, keep organized records, including:

  • denial letters
  • appeal documents
  • emails and written correspondence
  • notes from phone conversations, including dates, times, and representative names

Keeping detailed records may help if your appeal progresses through multiple stages.

Patient assistance programs for Dravet therapies

While you are working through an appeal, additional resources can help you maintain access to treatment. Rare disease drug access programs are designed to support people facing insurance-related barriers or financial challenges.

Manufacturers of branded Dravet syndrome treatments often offer patient support programs that help with prior authorization requirements, appeals assistance, insurance navigation, and, in some cases, temporary medication access while a coverage dispute is being resolved.

You can also find support through your local Epilepsy Foundation office. The foundation can help connect you with financial assistance resources, advocacy services, educational materials, and other support programs.

To learn more about the resources available to you, consider:

  • asking your neurologist’s office about manufacturer support programs
  • contacting the Dravet Syndrome Foundation for advocacy resources and guidance
  • reaching out to your local Epilepsy Foundation office for support and resource information
  • searching nonprofit databases such as NeedyMeds or RxAssist
  • asking about copay assistance programs if you have a high-deductible insurance plan

You may benefit from connecting with your insurer’s case management team. Many insurance companies assign case managers to people with complex medical conditions. Having a dedicated point of contact can help streamline communication and reduce delays.

Moving forward after a denial

Receiving an insurance denial for a Dravet syndrome treatment can feel discouraging, but a denial does not always mean the end of the process. By working with your healthcare team, understanding your appeal rights, and exploring patient assistance programs, you may improve your chances of accessing the treatment your doctor recommends.

If you have questions about your coverage or the appeals process, talk with your neurologist, insurance company, or a patient support organization. They can help you identify resources and navigate the next steps.

Program availability, eligibility requirements, and financial assistance levels can change over time. Contact individual organizations directly for the most current information. Before making any changes to your treatment plan, talk with your healthcare team.

Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


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