5/18/2017 by Share Your Story

Christina Thompson faces endless insurance appeals to access prescribed treatment

Patient Christina Thompson, who is living with Myasthenia Gravis, has filed appeal after appeal with her insurance company -- in an attempt to gain access to the treatment recommended by her doctor.


Maryland MG patient faces endless insurance appeals to access right treatment

I was diagnosed with Myasthenia Gravis on September 20, 2011. I was with Blue Cross at the time. In February 2012 I started intravenous immunoglobulin (IVIG).

On January 1, 2013, due to my husband’s employer switching insurance companies, I began being covered by United Healthcare. I was receiving 50 grams of IVIG two consecutive days every 28 days. I get it at Baltimore Washington Medical Center Outpatient Infusion Center in Glen Burnie, MD. Everything was fine. I was getting letters saying the IVIG was medically necessary.

I was admitted to the hospital once in crisis after a fall caused me to break my back.

Then in October 2015 I received a letter saying my insurance doesn’t cover experimental treatments. When my neurologist, Igbal Singh, appealed it I received a letter saying IVIG is not a FDA-approved treatment for maintenance for Myasthenia Gravis.

With help from the hospital I was able to finish my treatment for 2015. I missed the first three months of 2016. I was then able to have treatment for three months, but I had become so weak and my breathing was so difficult that I was admitted to the hospital in June and July. It states on my medical records that I was in Myasthenia crisis.

My doctor fought with the insurance company. I spent August and September fighting to breathe. I received a call from my doctor who had received a letter from the insurance company stating I was approved for six months, until January 2017. I didn’t receive the letter from the insurance company until November 2016. I then received another three months approval that ended on April 7, 2017. I didn’t receive that letter until the beginning of April 2017. If it wasn’t for the people at the infusion center I wouldn’t have known I was approved.

Now I’m at the start of yet another fight for approval. Without the IVIG I cannot take deep breaths. I feel like I just ran a mile and I’m trying to catch my breath. I can barely get out of bed. Forget trying to cook anything, do the housework, grocery shopping, or even leave my tiny apartment to check the mail. With the regular IVIG I can take full deep breaths, I can cook dinner, get the laundry done, go grocery shopping—maybe not all in the same day, but I can do it. I’m on other meds for my Myasthenia, but it’s apparent that they’re not enough without IVIG.

Any patient who has been denied access to a treatment recommended by their doctor is encouraged to call Patients Rising’s patient helpline at 202-750-1168, or email: info@patientsrising.org. Patients Rising, a leading patient advocacy organization, was formed to stand up for patients, advocate for their rights, and fight for their access to the medications they need and deserve.


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