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UPENN Publishes Updated List of Known Autoantibodies

As many visitors to our website may already know, University of Pennsylvania has their own clinic manned by Doctors Eric Lancaster and Josep Dalmau. This clinic has it’s own proprietary laboratory which using immunohistochemistry to identify serum and/or CSF samples that are shown to have immunoreactivity with the brain. We are told that these are most often the patients that receive an autoimmune encephalitis/encephalopathy diagnosis from Dr. Lancaster and Dr. Dalmau’s team of doctors at UPENN.

This list may be a great resource tool for patients, families, and caregivers who wish to learn more about autoimmune encephalitis/encephalopathy and the diagnostic procedure at UPENN.

We encourage you to read more on the UPENN website [].

Tips on Filing a Health Insurance Appeal

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care in determining the relevancy and accuracy of the information found outside of this website as information may be outdated,  moved, or changed since this post was written.

While some patients find receiving a diagnosis of a rare and complex condition difficult, it can also be difficult to obtain “experimental” or “off-label” treatments that may be ordered by physicians and neurologists for HE. We have gathered some resources for patients who have a diagnosis, a treatment plan, but have been denied the prescribed treatment by their health insurance carrier.

In this post, we refer to “you” though we realize you may be assisting a spouse or partner, family member, or friend with the appeal process.

Why are claims denied?

Claims may be denied for a variety of reasons which are not always immediately clear to patients or those helping navigate the healthcare and insurance systems. Some treatments prescribed for rare conditions, like HE/SREAT or other forms of autoimmune diseases which are meant to maintain a patient’s health, may be denied due to the high ongoing cost of treatment, the insurer may feel the treatment may not meet their current requirements as “evidence based”, or they may have other reasons.

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 can’t hurt to ask for an explanation help you gather more information on why the claim was denied. Also ensure that you know where you may send a written appeal in response to their denial letter.

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

Sometimes human error may be involved on either side of the claim. Before acting on a denied claim, it might be worth speaking to your practitioner’s medical billing and claims department to ensure the correct patient identifier was used in filing your claim. If not, the  insurance company may have denied the claim based on incorrect information. Ensure spelling, date of birth, your subscriber number, and group number are correct.

While you’re checking this information, you might also ensure that the correct International Classification of Diseases (ICD) code is being 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 as it falls under the umbrella term of “other causes of encephalitis and encephalomyelitis“, which is ICD-9 CM Diagnosis Code 323.81.

In October of 2015, this code will be “replaced by an equivalent ICD-10-CM code (or codes) when the United States “transitions from ICD-9-CM to ICD-10-CM“, according to the website 1 This code will change to G04.81 for “other encephalitis and encephalomyelitis“.

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.

Written Appeals

Once you have determined that the claim was correctly filed with all information entered correctly, contact your carrier to discuss your benefits, exclusions, and the reason for the denial. The carrier will be able to supply you with the appropriate 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 can be beneficial if further escalation is needed in the appeal process, for example if third party involvement is necessary. It is also important to have a copy of your full policy documents for your records and to refer to if you should have to escalate the claim. Your policy documents should include a section that addresses the appeal process and address 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.3

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.

Identify Your Advocates

As you consider how you will appeal, think about what individuals or organisations might be able to assist you in writing your appeal or finding help with appealing. Your treating physician may be able to write a letter on your behalf. If you are working with a social worker at the 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 as well to find local groups who may be willing to help advocate for or with you during this process. There are many local and national disability groups across the United States and they may have many ways to connect with them such as their website, Facebook, or other social media.

Sharing Your Story with Others

While you consider what individuals or groups may be able to help advocate with or for you, be ready to share your story with others. You might enlist someone to help you write down the details of your HE/SREAT, your diagnosis process, the treatment that has been prescribed, why it was prescribed, and a brief explanation to others 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 effectively help you get the treatment prescribed for you.

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 local groups, religious groups, advocacy, or disability groups interested in helping you. Helping others “connect” personally with your story can help them share your situation with others who may be in a position to offer you their assistance.

“Where Can I Find More?”

This is in no way an exhaustive or comprehensive guide to appealing a claim. There are so many resources you can choose from on how to get the help that is most appropriate for your situation. The first step is understanding why you were denied treatment 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 and make informed choices on how best to move forward from a denial letter from your health insurance carrier.


More Insurance Appeal Tips, Resources, and Disability Advocates

The US Goverment also provides information on on the appeals process, found on their page “How to appeal an insurance company decision“.

The website The Jennifer Jaff Center, provides a very detailed and excellent article on this subject called “How to File Insurance Appeals“.

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

The National Disability Rights Network has a list of causes which they advocate for found at

The online version of Forbes Magazine provides some tips in “The 5 Things You Should Know When Your Healthcare Claim Is ‘Denied‘”

Finally, for the top five reasons bills to your health insurance carrier are denied, check out this quick article at




1 More information about ICD9 Diagnosis Codes can be found at the website, including a list of the current 2014 to 2015 disease symptoms and information.

2 Visit for a list of current CPT codes for your specific treatment.

3 “The options for challenging an insurance company’s decision are limited. Appeals can be slow and cumbersome, if they are available at all, and most patients are barred from suing for damages resulting from denials and delayed treatments.”  – New York Times “For Denied Claims, a Bit of Help in the Health Law“.  

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AE Alliance
"The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.

The Encephalitis Society
"The Encephalitis Society is an International organization providing information and support for all causes of Encephalitis."

Encephalitis Global
"Encephalitis Global is a U.S.A. 501(c)(3) non-profit organization formed in 2005 as an alliance connecting encephalitis survivors and caregivers around the world."

Scientific literature is growing at a rate of more than 2 new articles every single minute. It is impossible for scientists to consume and understand the rapidly expanding ocean of biomedical literature. You can help biomedical researchers find the information they need to discover cures faster.
"Connecting Rare Disease Patients Globally"
"Alone we are rare. Together we are strong.®"

Contact a Family
"For families with disabled children."

Madison's Foundation Provides information about rare diseases and connects parents whose children have the same rare disease.

NIH Health Hotline
Toll-free numbers from the National Library of Medicine's Health Hotlines Database.

HE Notebook - Wordpress Site
A great blog of an HE patient with a trove of information, personal stories, and links to medical studies.