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Insurance and Elmiron: What You Need to Know

Several IC patients have reported that their health insurance providers are notifying them that they are no longer covering pentosan polysulfate sodium (Elmiron), the only oral medication specifically approved by the U.S. Food and Drug Administration (FDA) for treating the pain and discomfort of IC.

Research conducted by GoodRx last year suggests that insurance companies have reduced the number of drugs they cover by 17 percent over the past decade.  Elmiron has typically been considered a higher tier medication with more expensive copays on the list of drugs each insurance company covers, known as a formulary. Its status as a Tier 2 or higher drug in many formularies reflects that Elmiron is a specialty drug that treats a rare medical condition and that does not have a generic counterpart. (To learn more about drug tiers, click here.)

Elmiron also has fallen under closer scrutiny following recent studies showing a potential association between its use and retinal abnormalities called pigmentary maculopathy that can result in vision changes and loss. The FDA has not taken any action to date but did add Elmiron to its watch list of drugs or drug classes for which there is a potential sign of serious risk or new safety information.

If your insurance company notifies you that your coverage is being curtailed, you have the right to file an appeal. Here’s what to know:

  • Any correspondence explaining the denial of service should describe the appeal process, including key deadlines and the forms and supporting materials that must be filed.
  • Ask your doctor to write a letter stating that the medication is medically necessary and there are no alternatives. They may also provide additional information about other treatments that have been tried and failed. Provide your doctor with the address listed in your insurance plan’s appeal process and ask for a copy of the letter for your own records.
  • Keep records of all calls and written correspondence, including dates.
  • If your insurance is provided through your employer, your company’s HR department also may be able to write a letter or call supporting your appeal.
  • If the appeal is denied, an external appeal process may be an option; the process varies by state and insurance plan.

For more advice on managing insurance company appeals, read this WebMD article.

ICA has recommended that patients taking Elmiron discuss treatment options with their healthcare professional. ICA also will continue monitoring this situation and keep the IC community informed.


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