South Carolina MG Patient Kait Masters Battles Insurance for Access to MG Treatment
I have had Myasthenia Gravis for 15 years. At the age of 11 I was diagnosed with juvenile onset generalized Myasthenia Gravis and underwent a thymectomy less than a year later for an enlarged thymus. Intravenous immunoglobulin (IVIG) became part of my treatment plan eight years after diagnosis.
Five years after the thymectomy, I had a three-year remission. Then I started having symptoms again. At that time, I was 19 years old and close to aging out of pediatric neurology while at the same time discovering that my symptoms no longer responded to Mestinon, our only FDA-approved drug. My pediatric neurologist started me on monthly IVIG because she did not feel comfortable putting me on immunosuppressants – her clinic at DuPont at the time did not use long-term steroids or immunosuppressants in children with MG.
I completed my junior year of college flying monthly from Boston to Philadelphia, driving 45 minutes to DuPont’s day medicine facility, and spending a few days recuperating at home afterwards. Then I would fly back to college and repeat it all over again a few weeks later. I missed 11 weeks of my junior year of college. But I finished all my classes, and soon was set up with a new neurologist at Johns Hopkins, where I started on immunosuppressants for the first time. I stopped IVIG so I would be able to be more present for my senior year of college. I graduated in 2012 with honors and a degree in studio art.
I didn’t start on IVIG again as a main form of treatment until 2015, after moving to South Carolina and setting up with yet another new neurologist. A summer trip to be maid of honor in my sister’s wedding (at a ski lodge in Colorado—over 10,000 feet above sea level) set my MG symptoms into overdrive, and I never bounced back. I spent the next several months struggling to breathe and to complete daily tasks such as folding the laundry, chopping vegetables, or walking the dog. I lost my part-time job when I requested a schedule change to accommodate my symptoms. Finally, in September my neurologist prescribed IVIG to help with the breathing, and increased my immunosuppressant dose in the fall of 2015.
And then the insurance fighting with United Healthcare began. I was covered under my husband’s employer plan. We don’t qualify for assistance, and I was denied Social Security Disability (SSDI). First they would only allow me to receive it in home, but didn’t have an in-network specialty pharmacy that could fulfill the IVIG order. Then we struggled to find a home health agency to contract with that had a nurse to administer it. We patched a plan together for the first infusion in early October, and after that the home health agency we contracted with closed and the insurance company’s specialty pharmacy refused to help find a new nurse. My only option was to drive three hours each way to Atlanta, where my neurologist was located, because they could not find anyone to contract with.
The effects of IVIG are amazing for me, but they don’t last. So while I began navigating this stress, for the next six months my breathing worsened and my overall weakness increased. Soon my neurologist realized there was not much more he could do for me, and I was sent a referral to a new neurologist in Charleston at a Muscular Dystrophy Association (MDA) clinic. I think this brings my neurologist tally up to nine in the last 15 years.
She recommended that I be put on IVIG right away, knowing my history of not responding to Mestinon anymore and the immunosuppressants being ineffective in controlling my symptoms. Then began another fight with United Healthcare. My neurologist wrote for the infusion to be done at home. United Healthcare again did not have an in-network specialty pharmacy for me to use that had nurses who could administer the infusion. An out-of-network infusion company, NuFactor, granted me three months of compassionate care (free IVIG) knowing what a bad situation I was in. So while I received those free treatments my care team tried again, prescribing IVIG to be administered at an infusion center. At this time, I was also taken off immunosuppressants. After five years on them, they were no longer effective and I was suffering from quickly and severely developing secondary infections from things as minor as a cold.
Then IVIG was denied on the basis that it was not medically necessary and that IVIG is not an effective treatment for Myasthenia Gravis. My neurologist appealed, and it was approved for 90 days. Or so we thought, until I received another letter and phone call saying it was denied again. My doctor was granted a 15-minute peer-to-peer phone call to follow up on her submitted documents. We went through this cycle; deny, appeal, deny, peer-to-peer on about a four-week rotating schedule. She told me in December of 2016 that she had no idea how much longer United Healthcare would continue granting our appeals.
Without an alternative health care plan offered through my husband’s job and feeling like my only option was to switch insurance companies, I took a telecommuting full-time job. They agreed to be flexible to allow me to work from the infusion clinic every other week during IVIG.
So far, Blue Cross Blue Shield (the plan through my new job) has approved my bi-weekly IVIG for six months at a time. But I live in fear every day of losing access to the only treatment that works for me. My friends and co-workers wonder how I work while also managing this disease. It is so hard, but in order to have the quality of life I deserve, I have to do the work to have this insurance plan. It is a cycle, and often times I am utterly exhausted. But my quality of life has greatly increased, as well as my breathing functions. IVIG has changed my life – it has allowed me to find a job, find a sense of purpose, and no longer have nights afraid that I will stop breathing in my sleep.
Every MG patient knows we are stuck between a rock and a hard place. There are limited numbers of us to conduct peer-reviewed scientific studies. Our symptoms vary greatly from person to person and day to day. The treatments that are most effective are often extremely expensive and lack FDA approval for use specifically for MG. I wish the decision makers in insurance companies could spend a week living the life of an MG patient who is experiencing an exacerbation of symptoms without access to the one treatment they know will help them. It feels like stumbling through a desert and feeling the most intense relief thinking there is an oasis of water ahead, only to find out it was a mirage. Our intrinsic value should not be resigned to decimal points and dollar signs. Many of us spend long periods of time waiting with debilitating symptoms for someone to decide that our quality of life matters.