Dealing with Insurance Providers

For people with rare diseases, dealing with insurance providers can be a time-consuming, complex, and often stressful experience.

Determining what treatments and procedures are covered and advocating for your rights as an insured patient are important keys to successfully navigating the health insurance landscape.

Keep thorough, up-to-date records. Store all policy statements, claims statements, and notes of conversations with insurance representatives in a binder or electronic health record. Keep these records well-organized and accessible so that you can refer to them each time you speak with your insurance company representative.


Request an insurance case manager. Because rare disease patients often have complex healthcare needs, a case manager can serve as the dedicated liaison to help patients manage their benefits, arrange care, and find resources.

  • Case managers are usually registered nurses or social workers with special training in helping patients navigate the health insurance landscape to better understand the covered treatments and resources available to them.
  • As a patient, you benefit from having a single point of contact dedicated to managing your account.
  • If your health insurance company has not assigned a case manager to your account, ask for one.

Understand prior authorizations. A prior authorization is also called a pre-certification or prior approval. This is a process many health insurance companies require. It involves having your physician or healthcare provider secure expressed approval for a specific drug, treatment, or procedure. Without this approval, the insurer will not cover the cost.

  • Prior authorization can increase wait times for patients to receive drugs or treatments. Sometimes the process results in denial of coverage.
  • A benefit to the prior authorization process is that it helps to reduce surprise medical billing by ensuring coverage for drugs and treatments ahead of time.
  • Always ask your doctor or pharmacist if a prior authorization is needed for a drug, treatment, or procedure.
  • Your healthcare provider has the responsibility for submitting a prior authorization request. Always check with your insurance company if you need to confirm coverage for a specific treatment or procedure.

Be proactive in appealing a denial of coverage. Health insurance companies sometimes deny requests for prior authorization of a specific drug, treatment, or procedure. As an insured patient, you have the right to file an appeal to this decision. The appeal usually must be completed within a specified time. This involves sending a detailed letter to the insurance company outlining the reasons why the treatment is medically necessary.

  • To strengthen your case, ask your doctor to write a supporting letter providing evidence of medical necessity.
  • Send your letter and supporting documentation through certified mail or online to a designated appeals address.
  • Within seven to 10 days, follow up with your insurance company to confirm that your appeal was received and that all necessary documents needed for a decision have been submitted.

The patient advocacy organization, Global Genes has developed a toolkit for rare disease patients and families entitled Navigating Health Insurance. LEARN MORE.

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