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Travel Tips for the AE Warrior

Travel Tips for the AE Warrior

December-18-2019 | Mari Wagner Davis, RN

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Last Summer my husband and I traveled to Italy to celebrate our 25th wedding anniversary. Not only was it special because it was our 25th anniversary, but special because we had survived 2 years after my seizures and diagnosis with autoimmune encephalitis.  My husband has learned a variety of tricks to help me feel more comfortable in any environment. Traveling overseas, was something we hadn’t done since I got sick.

I found the following tips helpful and wanted to share them:


  1. If you haven’t traveled at all since you were diagnosed, consider doing a weekend stay close to home, to help identify any issues like finding the room, remembering which floor you are on) ahead of time.

2. Bring your insurance cards with you, physician’s phone number and important medical records(I had mine copied to a computer disc).


3. Make sure you have reservations and confirm them, keep a folder where you can write down confirmation numbers.


4. Provide your family members with your itinerary, including phone numbers.


5. Identify how to get medical help in countries where you do not speak the language.


6. Consider using a travel agent that specializes in planning trips for people with disabilities.


7. Plan on addressing jet lag before you leave. Try to adjust your sleep schedule a couple of hours to the time zone you will be in.


8. Adjust scheduling your medication schedule as close as you can to the time zone you are traveling to a week or so before you leave.


9. While flying try not to sleep too much especially if you will be arriving in the evening.


10. Set your watch to local time so you do not get confused.


11. Drink plenty of fluids.


12. Daylight can reset your internal clock, be aware that you may need to nap to adjust to the different time zone.


13, One trick I have found helpful in hotel rooms is to leave the bathroom light on, so I can find it in the middle of the night.


14. Finally, be flexible and have a sense of humor!


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How A Mother’s Advocacy Literally Became Her: Saving Grace

How A Mother’s Advocacy Literally Became Her: Saving Grace

May 4, 2018 | Emily Ludlow Flynn

We received the dreaded letter of denial from our insurance company 7 days before my daughter was due for her IVIG treatment. I immediately turned to IAES for guidance. I was instructed to go to their website and read the page about “How to overturn a treatment denial” and then ask them follow up questions to verify I fully understood what needed to be done.  I read every word. Then, I read it again.

If I was going to advocate for my child, Grace, I had to know and understand exactly what steps to take! The very first thing I did was double check what diagnostic code the ordering doctor used. International Autoimmune Encephalitis Society’s website makes it easy because they give you the correct code in their information. I compared it with the code the doctor used.  There it was.  Just as the website reported that the most common reason for receiving a denial was that the wrong diagnostic code is used, the coding for Grace’s diagnosis was not for autoimmune encephalitis.  The doctor or a staff member in their office had made a mistake and used an incorrect code.  Having identified the problem, I now knew that it could be corrected.

I immediately called the doctor’s office to make them aware of the situation. But I was faced with the next challenge. They had received the same denial letter from our insurance company prior to us receiving ours and instead of double checking their codes, they wrote an immediate appeal and attached 45 pages of notes stating WHY my daughter needed the treatment. They informed me we would know in 72 hours if it went through.

I checked back in with IAES and updated them on the situation. I was quickly informed that the doctor’s office or whoever was in charge of doing the prior authorizations in the doctor’s office were making ANOTHER mistake by appealing the denial. “You don’t want to appeal a denial when the wrong diagnostic code is used! A NEW prior authorization with the correct code must be submitted.” They explained.

So, I got back on the phone with the doctor’s office and gave this information to them. The answer I received from them was, “Well, the doctor wrote the appeal and gave 45 pages of evidence and it should take 72 hours before we know if they will accept it.” I again insisted that they should not appeal due to the incorrect code. She said, “oh ok, I’ll just let them know about the new code.”

Oh boy, I started getting a little irritated. To top it off, I had been told the doctor had left town for two weeks.  Clearly, I was getting nowhere in getting the office staff to understand what actions needed to be taken. I knew that their efforts would result in a denial of the appeal. So, I decided to contact the hospital nurses in the infusion center that are in charge of submitting prior authorizations. I went over all the information with the nurse. She agreed a new prior authorization was needed and would contact the insurance company to get it done. Thinking I was out of the woods, I relaxed a little.

The next day the infusion nurse called to let me know the insurance company told her she could NOT submit a new authorization for 6 months. Ahh! What?!  I knew this simply was not true and I demanded she contact them again. She said she would try.

I updated IAES and we decided it would be easier to go over the situation on the telephone. I learned that the insurance company appeared to be under the impression the patient was being given a different diagnosis and not addressing this as a clerical error.

“If you need a lifesaving treatment, and pay good money for health insurance, do you really thing the insurance company is going to tell their customer: I’m sorry but due to a clerical error we can not give you your lifesaving treatment? I’m afraid your life will have to be cut short?”  She explained that, “Most infusion nurses are really wonderful and want to help, but there are times when you will sense that you have to be pushy.  Be confident, you are informed now. If you have to, be pushy. At times, it’s appropriate.”

I followed up with the infusion nurse the next day. I was being pushy, and I was learning that with that and my sense of confidence I was getting the job done. We only had 2 days left until my daughter’s treatment was scheduled. I was feeling the urgency of getting this accomplished. At this point, the insurance company accepted the new prior authorization and the nurse told me she marked it as “urgent” and “high priority”. At the end of the day we should have an answer.

– – But no… that’s not what happened. The nurse called to check the status of the authorization and the insurance had NOT put it as high priority. She said it wouldn’t get looked at for another day or two or maybe up to 14 days. This was not acceptable. The insurance company had already made one mistake by telling us we had to wait 6 months, now they don’t push it through when marked urgent?

While problem solving on the telephone with IAES, I was told that when a clerical error is made and a delay created from their mistake a new prior authorization with the correct code could be faxed to the insurance company and the person who submitted the corrected prior authorization could then ‘walk it through’ explaining to the insurance company that it was their clerical mistake. That in situations like this, the correction could be made in a matter of hours or by end of day. In fact, I was advised to give them a time limit as to when I expected to have it approved and let them know I expected a call back telling me the mistake has been corrected.

So, I called member service on the back of my insurance card and told them I need to make a member complaint and asked to speak directly to a member services supervisor. This is what got the ball rolling. They were apologetic, offered as much assistance as I needed, and they even got the authorization labeled high priority. I wrote down the supervisor’s name and direct contact number. I told her I would call in the morning and make sure it went through.

Friday morning: the day of Grace’s infusion. The Nurse at infusion center called to let me know the prior authorization had NOT gone through and was still pending review. I put my big girl pants on and called the supervisor and said, “My daughters treatment is scheduled to take place in 45 mins. THAT’s how long you have to get the authorization through or I’m going above your head.”


My daughter and I showed up at the appointment, waited about 15 minutes and the nurse walked over to tell us the authorization was approved. Hallelujah!!

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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

You cannot get insurance

You cannot get insurance

July 20, 2017 | Gene Desotell


Most people know that there exists a mandate that says everyone has to have health insurance or they are fined by the IRS when they file taxes. But what happens when you have Autoimmune Encephalitis and no one will sell you medical insurance?  If you do not make enough to buy through the Exchange, then the story goes you are eligible for Medicaid.

       Today, I made a three way call with the exchange to get a member on a policy through the exchange. They said because she had no income mainly because she was ill with Autoimmune Encephalitis she was not eligible for the subsidy and as such, not eligible for medical insurance through the exchange. The exchange states that she can pay the entire cost of a policy on her own, but she has no income to make such a purchase.

      So, with no income, that person must be eligible for Medicaid. Now Medicaid is a federal program written under federal statutes and they permit states to make some modifications and offer Medicaid through the state in which you reside. Well, this member resides in the state of South Carolina where the law makers of that state have not been very caring about people who are sick. In fact the member qualified for Medicaid based on their low income, but the state of South Carolina has another rule requiring a person age 55 have a child at home in addition to low income. I have to say, the member had no child living at home so was denied Medicaid.

      So how does a person suffering with Autoimmune Encephalitis survive the disease when all insurance is refused and you have no income. She resides with a boyfriend who is a caregiver but still, she cannot get medical insurance. At the end of the year when she files her taxes, they will penalize her except there was no earned income to pay for any penalty.

       She has the neurologist who diagnosed Autoimmune Encephalitis and he can write prescriptions. We know that low income people can apply to the program at Genentec so we suggest she have her doctor place her on Cellcept and get the prescription filled through Genentec, the maker of Cellcept.

 But what if there is an emergency and she ends up at the hospital, who pays?  All nonprofit hospitals today are required to have a policy on the hospitals web site stating their financial assistance policy.  Patients who are under 100% of the poverty level cannot receive a bill according to federal statutes. US Health and Human Services pays hospitals to care for those making less than 100% of the poverty level who are underinsured or uninsured. The Federal statute is 501 C3 (R) that says if a hospital, requires an uninsured or under insured earning under 100% of the poverty level, balance bills that patient, the IRS can remove the hospitals nonprofit status causing the hospital to now pay the full taxes on all the money it receives.


 While financial assistance can be used against the hospital, people with no insurance will not usually make it passed the emergency room unless there is an emergency requiring in patient care. So in this matter, The member was suggested she leave that state to one which will provide Medicaid based only on income and children not required to be living at home.                

Genentec should be able to supply cellcept after her doctor writes the prescription. And in an emergency, she does not have to worry about the bill as long as her income stays low.

When you have a disease like Autoimmune Encephalitis, it is important that you know your insurance policy as well as your rights under the law to get treatment. Plan in advance and do not wait till an emergency happens before you look into things. Before you get any treatment, if you are unsure that your insurance will cover, ask the insurance to pre-approve the procedure so you have it in writing that they will cover.

      Currently we are working with Mayo Rochester to get our members in earlier so they do not have to wait on lists for an appointment. We are also working with patient advocate organizations who gets insurance denials over turned. They tell us what we already knew, most denials are because of the wrong ICD 10 diagnostic code was used.  Remember, the code for Autoimmune Encephalitis is G04.81. Just as important is the doctor has the skills to articulate the G04.81 disease to the insurance in any appeal.

      We hope this short paper provides valuable information to members that they will use to their advantage.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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