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Filing Insurance Appeals



While some patients find receiving a diagnosis of a rare and complex condition difficult enough, it can also be difficult to obtain necessary treatment designated as “experimental” or “off-label.”  We’ve gathered some resources for patients who have a diagnosis and a treatment plan, but have been denied coverage for the prescribed treatment by their health insurance carrier or administrator.

Why Are Claims Denied?

Claims are denied for a variety of reasons. Those reasons are not always clear to patients or those helping to navigate healthcare and insurance. Some treatments prescribed for rare conditions like HE/SREAT  may be denied due to the high ongoing cost of treatment. If not denied on this basis, an insurer may feel that the treatment does not meet their current requirements as “evidence based.”

Your Explanation of Benefits statement (or EOB) may give you some idea as to why your claim was denied. If you do not understand the reason for the denial, it doesn’t hurt to ask for an explanation. You may want to gather as much information as possible regarding the basis for the denial. Be sure to determine where to send a written appeal to the denial letter, and how long you have to file an appeal.

Human Error – Incorrect Patient Identifer, ICD Code, and CPT Code


Sometimes a denial of coverage for a particular treatment may be due to human error on either side. Before acting on a denied claim, it may be worth speaking to your practitioner’s medical billing and claims department. Did they use the correct patient identifier on your claim?

If not, the  insurance company may have denied the claim based on incorrect information.

Ensure that the following are correct:

  • The spelling of your name

  • Your date of birth

  • Your subscriber number, and your group number.

It is also critical that the correct International Classification of Diseases (ICD) code was used:

If you have been diagnosed with HE/SREAT. As of the writing of this guide, there is no ICD code for Hashimoto’s encephalopathy.  Instead, it falls under the umbrella term of “other" causes ex: autoimmune encephalitis.

Insurance Codes

In October of 2015, the existing code was “replaced by an equivalent ICD-10-CM code (or codes)“ when the United States transitioned from ICD-9-CM to ICD-10-CM. 

The code for autoimmune encephalitis and encephalomyelitis is G04.81 or for unspecified encephalopathy is G93.40.


According to ICD10data.comOther encephalitis and encephalomyelitis, G04.81, is a billable/specific ICD-10-CM code that can be used to indicate the diagnosis for reimbursement purposes. This is the American ICD-10-CM version of G04.81.”  It is now categorized as, “2017 ICD-10-CM Diagnosis Codes, Diseases of the nervous system, Inflammatory diseases of the central nervous system, Encephalitis, autoimmune encephalitis, myelitis and encephalomyelitis.” G93.40 is unspecified encephalopathy from brain injuries or illnesses.

If you have concerns about the ICD code being used, please consult your physician’s office or other appropriate authority to clarify, if needed.


Another piece of data to check with billing is the use of the correct “Current Procedural Terminology” (CPT) for your treatment. Because patient treatment plans for HE/SREAT may vary, check 2 for a current list of CPT codes which is updated annually.

For an explaination on how CPT codes work, this post on SearchHealthIT is helpful.


Written Appeals


Once you have determined that the claim was correctly filed, contact your carrier to discuss your benefits, exclusions, and the reason for the denial. The carrier will be able to supply you with the mailing address or fax number for submitting an appeal in writing (it may also be on your EOB or in your policy contract).


While you may be told you can appeal by phone, appealing in writing ensures you have documentation of your appeal for your records. Keeping a copy of the EOB, denial letter, your appeal letter, and all correspondence is vitally important if further escalation is needed, for example if a third party is necessary. Keep all related paperwork in a secure location.

Get a letter from your doctor. This should be a letter from your physician including the importance of the life saving treatments you will be receiving even if it must be out of state. Ideally the doctor's office should send it in, if not you should submit this letter. 

It is also important to have a complete copy of your full policy documents for your records, in case you need to later escalate a claim. Your policy documents should include a section that addresses the appeal process and your legal right to recovery in the event you should suffer because of denied treatments. Carefully review this information in your contract or with your insurance representative, as insurance companies may include policy exclusions preventing patients from suing for damages caused by delayed or denied treatment.


A process for disputing a denial must legally be in place, according to In the United States, patients have the legal right to information on why their claim was denied and how they can appeal it. 

While you may be told you can appeal by phone, appealing in writing ensures you have documentation of your appeal for your records. 

Identify Your Advocates


Think about what individuals or organizations might be able to assist you in writing your appeal or finding help appealing.

  • Your treating physician may be able to write a letter on your behalf.

  • If you are working with a social worker at a hospital, they may be able to help you locate resources to help you write your appeal. These persons may be hospital staff who help patients complete billing information to help ensure the claim is paid – they want to get paid!

  • Also, enlist local groups such as charities or religious organizations who may be able to help advocate for or with you during this process. They may be able to help investigate if there are other options for the payment of treatment, such as “Charity Care” programs who help those who do not have access to insurance coverage.

  • Take advantage of your favorite search engine to find groups who may be willing to help advocate for you.

  • There are many local and national disability rights groups across the United States and indeed throughout the world.


Sharing Your Story with Others


Be ready to share your story with others. You might enlist someone to help you write down the details of your HE/SREAT journey, the process of obtaining your diagnosis, the details of your treatment plan, and a brief explanation about why treatment was denied by insurance. This will help those who can and want to advocate with or for you to understand the situation so that they can most effectively help.

Accuracy is very important! If people don’t have accurate information, it can cause confusion and make enlisting help from others very difficult. But don’t feel you have to give “too much” information. 

  • Keep private details private – Give the gist of things, as long as it’s accurate, should be enough.

  • Be sure to keep an ongoing written record of the dates when you see your physicians, details about your hospitalizations and prescriptions, and dates when you received notices from your insurance company. Creating a timeline that provides all of the relevant dates can be extremely helpful if it is kept current.


It can be very hard to get others interested in helping you if you don’t share why you need the help in the first place. Simply saying “my treatment has been denied” may not be enough information to get religious groups, advocacy or disability rights groups, or your local congressional representative interested in helping you. Helping others “connect” personally with your story, and the impact that a denial of coverage is having on your health and on the welfare of your family can encourage them to share your situation with others who may be in a position to offer you their assistance.

More Insurance Appeal Tips, Resources, and Disability Advocates


* This is in no way an exhaustive or comprehensive guide to appealing a claim. The first step is understanding why you were denied coverage for the treatment your doctor prescribed, and then choosing the help that best suits your circumstances. We’ve given you some basic details and links to finding more help.

Below are some additional tips and resources for you to explore so that you can make informed choices on how best to move forward after receiving a denial letter from your health insurance carrier. The US Goverment provides information at on the appeals process, found on their page “How to appeal an insurance company decision“. This is a great printable resource about navigating the appeals process with your insurance carrier.

The Center For Medicare This talks about "CMA REPORT: MEDICARE COVERAGE FOR OFF-LABEL DRUG USE."

The provides a “Guide to Disability Rights”  which provides helpful general resources for those who are disabled.

The National Disability Rights Network has a list of causes which they advocate for protection and advocacy for people with disabilities.

Forbes Magazine online provides some tips in “The 5 Things You Should Know When Your Healthcare Claim Is Denied.1' The centers for Medicare and Medicaid Services. The Center for Consumer Information & Insurance Oversight. Also see this link: "Code List for Certain Designated Health Services (DHS)"

Care "helping the consumer navigate the ever-changing healthcare landscape through education, advocacy and access to expert healthcare resources and information."

Health "Health Advocate has been helping Americans navigate the complexity of the healthcare system for over 16 years."

Families "Health Action Network helps health care advocates from across the country stay connected, informed, and engaged on key health policy issues and advocacy strategies. Our Health Action Team works with organizations in all 50 states."

Wall Street The "How-To" section about appealing a denial.

Disclaimer: This information is provided as information only and not a comprehensive guide to insurance claims or navigating the healthcare system. HESA is unable to provide personal advice or assistance to patients who wish to file an appeal with their health insurance carrier. If you require more information regarding your benefits, please consult your policy contract and contact your carrier for any necessary details. Please use care in determining the relevancy and accuracy of the information found outside of this website as information may be outdated, moved, or changed since this was written. 


Contributors: HESA and Kimberley Thomas Tague

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