At some point if you have insurance and are dealing with desmoplastic small round cell tumor you and your insurance company are going to clash.

In general, if you have a good insurance policy it will cover the first line chemotherapy, hospitalization, diagnostic testing, and surgery. The problems will start coming about half way through treatment. This may not happen to all patients if you are fortunate. The problem is that most insurance policies are not sure what to do when they encounter rare cancers. The first inkling you will have that there is a problem will be when you receive a notice that a new chemotherapy, surgery, stem cell rescue, radiotherapy, PET scan, or treatment option is considered 'experimental' so coverage is denied as being 'medically unnecessary'.

Do not panic. Read your policy thoroughly and than call the insurance company to file an appeal (over the telephone if you can). Most insurance companies apparently have a 'book' that they check to see if the disease or treatment is 'covered' under their policy. DSRCT is a rare disease so there won't be any 'precedent' for the insurance company to follow. The first thing they will do is routinely deny the claim. An unfair burden is than placed upon the patient and families to correct this situation. Try to stay calm, there are steps you can take and if you are persistent the insurance company should come around.

After all you have paid for insurance through your employment or out of pocket for them to cover issues just like this. Don't give up. Keep talking to anyone who will listen.

1. Ask for a 'case worker' , these are nurses or health professionals who will talk to you about your particular case. They cannot intercede with the actual claim but they can guide you through the maze. Remember though that these people work for the insurance company, so while they may sympathize with you they may not be entirely helpful. Still, they're good to cut through some of the red tape.
2. Write down as many phone numbers and claim adjuster names as you can. Record who you talked to, time, and date and what you discussed. It may come in handy later.
3. When you find the person handling your case, ask for an official appeal. You do not agree that the treatment was 'medically unnecessary'.
4. Ask your doctor or health practitioner to help you by calling or writing or faxing the insurance company. Give them the information that you received.
5. Write an official looking letter of appeal so that your case will be on file. You may use this: Template for Insurance Letter
6. Don't panic when they reject the first appeal.
7. For the second appeal you can ask that they provide a reviewer that is familiar with desmoplastic small round cell tumor, sarcoma, or rare cancer. Tell them that you have no choices, which is . . true . . that this is a rare disease with very few treatment options. You can also ask them what they would suggest as an alternate treatment . . that usually surprises them as they cannot answer this statement.
8. If the insurance company continues to be stubborn, you can contact your states bureau of insurance. You can go online and locate your state government website and possibly file a grievance online against your insurance company.
9. You can call or write your state representatives to complain that your insurance is refusing to pay a claim for a rare cancer treatment. They will ask that you write down and send them the information that you have so they can do an independent review.
10. Make sure that you file the second appeal. Keep all copies of your correspondence.
11. Hopefully by now the insurance company is coming to its senses and has enough information to

overturn the 'medically unnecessary' denial and they will agree 'just this once' to pay for this claim.

12. Unfortunately, this may reoccur over and over as you go through cancer treatment. Insurance companies are big and inpersonal. They will not remember your name when the next denial pops up on their screen. And, the whole process will start up again, but at least by this time you will know the steps to take to protest the denial.

Insurance Letter template.

DSRCT References


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