Blog 5: Insurance Discrimination for Rare Diseases

Hello everyone! For those of you just joining in, my name is Jonna Crocker. I am a high school senior who is making a series of blogs for my philosophy class, discussing the injustices for rare disease patients and what we can do to help. This is my fifth blog in this series, so make sure to read my other posts as well to learn more!!

Today, I will be discussing the way that rare disease patients are impacted by insurance and how many insurance policies do not meet the needs of families with these conditions. 

Because over 90% of rare diseases do not have a proven effective treatment or cure, insurance coverage is an extremely difficult topic when it comes to rare disease patients. When there is not enough scientific evidence that a treatment will work, oftentimes doctors prescribe medications for patients and the insurance company will deem it unnecessary because it is not proven that it will be effective. This leads to having to pay an extremely high amount of money out of pocket, in other words from your own paycheck. 

This leads to many challenges for families, as many patients or caregivers of patients may have to quit their job due to their condition, where they are already bringing in less income than they typically would. Now, most patients end up having to pay the entirety of the bill for experimental medications, treatments, or even testing to determine the cause of symptoms. 

For more common diseases with more research, this is not an issue. A patient with a certain type of cancer may get their wigs covered by insurance because chemotherapy is proven to be an effective treatment for their condition. But for a rare autoimmune disease that requires chemotherapy to function, patients would need to pay out-of-pocket, hundreds of dollars, to purchase their own wig because the chemotherapy is not proven to relieve their symptoms. 

Additionally, many medications used for rare diseases are considered “off-label drug use”, as the drug was originally created for a different purpose. For example, there are medications like botox that were created to relieve wrinkles in the skin, but now can be used all over the body to relax the muscles and allow organs to function properly. Common “off-label” uses include getting rid of migraines and injecting into the stomach muscles (pylorus). The insurance company will often deny these claims, saying that they are not the intended use of the medication or product.

Many patients or caregivers will spend countless hours on the phone with their insurance company to try and get appeals, as most if not all of what has been prescribed has been told it would be effective by a doctor. Still, with many medications, this can be a daunting task especially while feeling unwell. There needs to be a change in the system, where more medications are covered by insurance to give rare patients the treatments they need to have a good quality of life, relieving their symptoms.