Insurance & Your SADS Condition

Health Insurance and AEDs

Getting an AED through insurance companies is something that a lot of our families struggle with. See information below on Health Insurance for tips on dealing with insurance companies. Unfortunately multiple appeals are often part of the process.

Health Insurance

Some insurance companies are good at covering SADS-related testing and treatment, but many are not. It is not unusual for particular claims to be denied or for insurers to say they will not cover a test, procedure, or service that your doctor orders. If this occurs it is important to have a working relationship with a customer service representative or case manager at your insurance company with whom the situation can be discussed. This is your insurance—even if your employer pays for it—and you are the best person to get your company to pay for needed tests or services. Your doctor can help with a letter and/or recording the claim, but you are still the best one to put it all together and get it done. Many companies (those that make ICDs or AEDs, for example) have staff that help you get coverage for their products.

Two or even three appeals are just part of the approval process for some carriers. Most carriers also have the option to request an outside review company for your appeal. It is only when enough appeals are filed–and won–that policy is affected, and carriers stop “automatically” denying coverage. For that reason we always encourage every family to begin the approval process with their company and appeal high co-pays or denials.

Some commonly appealed issues are:


Paying out of network co-pays when there are no “in network” providers of that service (e.g. LQT specialists, or genetic testing)


High co-pays


Denied coverage for AEDs, ICDs, Genetic Testing, or a LQT Specialist

A first step should be to resubmit the claim, sent with a copy of the denial letter. It may be necessary for the patient’s doctor to explain or justify what has been done or is being requested. Sometimes the test or service only will need to be “coded” differently. If questioning or challenging the denial in these ways is not successful, then you may need to:


Postpone payment until the matter is resolved.


Resubmit the claim a third time and request a review.


Ask to speak with a supervisor who may have authority to reverse a decision.


Formally appeal the denial in writing, explaining why you think the claim should be paid. SADS may be able to help with this.


Request a written response.


Keep all originals of correspondence.


Keep a record of dates, names, and conversations you have about the denial.


Seek help from the consumer services division of your state insurance department or commission.


Be persistent in trying to resolve the matter.


Consider legal action.

If you would like to help—or tell us about your experience—please e-mail us or call us 801-272-3023.

Check Out Our Other Resources

Insure Kids Now!

Insure Kids Now! is a national campaign to link the nation’s 10 million uninsured children-from birth to age 18-to free and low-cost state health insurance. Find you own state’s insurance program for children through this Web site.

A Consumer’s Guide to Handling Disputes with your Employer or Private Health Plan

The Henry J. Kaiser Family Foundation and Consumers Union have developed “A Consumer’s Guide to Handling Disputes with your Employer or Private Health Plan.” This guide will help you understand the type of coverage you have, what rules apply, etc.

Life Insurance option for LQT1

Life Insurance

After many months of negotiation and effort on the part of two doctors, a major life insurance company, Metropolitan Life, will consider offering life insurance to some adults with Long QT Type 1.

Work With Your Company

Tips for Working with Your Insurance Company