You just experienced the shock of learning your child has a rare disease and now your doctor recommends genetic testing as the next step.

Brace yourself for shock #2: In most cases, genetic testing is not covered by insurance. In other cases, genetic testing is covered under limited circumstances.

Insurance companies are in the business of collecting premiums, not paying claims. The term “healthcare” is a tricky word in this context: Don’t confuse a business that makes a profit from premiums with actual care. The harsh reality is that as a business model, they generally do not care about your child’s health if coverage reduces their profit margin.

Coverage for genetic testing is routinely rejected because companies can do so without fear of backlash. In other words, anything that doesn’t affect the majority of its policyholders is up for grabs. The very name “rare” disease sends a signal to the reviewer that denial of coverage won’t create a big enough stir.

Simply stated, the system is against you.

That said, we have received countless denials from two different insurance companies over the past three years, and have successfully appealed every single one. Here are a few tips for the appeals process:

1. First and foremost, have a current copy of your insurance policy.

If you don’t have one, contact them immediately and request a copy. It is your right as it contains everything covered under your policy. Keep a current copy handy for future use, because, unfortunately, this will not be the last time you’re going to need it.

2. Know your rights.

A) If your claim is denied, you have the right to an internal appeal, meaning you can ask your insurance company for a full and fair review of its decision; B) You often have the right to demand a specialist in the applicable medical field perform the review if denial was based on medical criteria. Request it. These specialists will have more independence and a better understanding of rare disease patients and the value of genetic testing; and C) You have the right to an external review from an independent, third-party – keeping in mind that their “independence” is debatable.

3. Ask your doctor to write a letter.

Most doctors are well versed in this area and will likely mention it when they discuss genetic testing with you. If not, initiate the conversation and coordinate their assistance.

4. Request all documentation related to the claim.You have the right to copies of all documents, letters, and peer-to-peer reviews related to the matter, and all guidelines, protocols or other criteria on which the decision was made for denial.

5. Consider the assistance of an attorney.

There are plenty of attorneys who offer pro-bono (FREE!) assistance. Ask around your community and groups.

Now you are ready to appeal. I like to include a photograph of my child with the appeal letter. Whether a picture is effective or not, I want the reviewer to see the human side of the appeal.