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.
