IVIG and Mestinon...the Treatment Cost Dilemma

One month's worth of IVIG solution
and infusion supplies at a billing
cost of $42,000 per month

Recently, I saw a new neurologist, whose practice is located in the town in which I live. For 2 1/2 years, we have been traveling to Houston to see my neurologist and for my Intravenous Immunoglobulin (IVIG) treatments, but the trips have become increasingly more difficult both physically and financially, so we decided to make a change. When I saw the doctor, I was terribly weak, so he increased my daily medication dosage and told me he wants me to have my treatments at his infusion clinic (I have been getting them at home since February). We are in the process of putting things in place, but my Medicare Advantage Plan coverage limits have stymied things a bit until we can come to a financially manageable agreement. Until then, I will continue to receive my treatments at home, believing that God, who has provided just what we need as we need it, will remain faithful to do so. My faith is strong, and I cling to the promises in the Bible that tell me that I have nothing to worry about, that He cares for me.

I must admit that I have struggled with this entry, having started and stopped multiple times because I do not want to come across as needy or wanting pity about my situation. I am writing because I am committed to my promise of transparency, my fight for awareness, and on behalf of all chronically ill patients who are wondering when the day will come when we will have to choose between having the necessities of life and getting the medication and treatments we need. The picture above reflects a new shipment of one month's worth of my lifeline, Intravenous Immunoglobulin (IVIG), and the supplies I need to receive my treatments at home.The cost of this treatment is exorbitant, and were it not for my home healthcare company working with me and my Medicare Advantage Plan (who is billed $42,000 every month), I would be unable to afford the treatment I now receive every two weeks. While I am grateful for the approval process that allows me access to this life saving treatment, the mounting cost of my part, along with that of my other medications, is cause for concern and stress. Because I am a part of multiple support groups, I know...and am brokenhearted with the knowledge...that I am not alone in this dilemma.

I take approximately 10 different medications (about 22-23 pills per day) for my conditions, and thankfully, the cost of most are relatively manageable. However, one of my medications, called Mestinon...the most important one, in fact, for Myasthenia Gravis patients because it helps get the message from the nerves to the muscles (including those muscles needed to breathe) to cause them to work properly...has risen astronomically in price each month for the past year to an amount nearly impossible to pay. Last month, my out of pocket cost for Mestinon alone was over $1,000, with a retail price tag of almost $3,000 for a one month's supply. The rise in cost is baffling to everyone (including pharmacists nationwide) because it is increasing at such an alarming rate. A year ago, the retail cost for Mestinon was only $600-$700 per month. Granted, there is a less expensive generic form of this medication, but for many like me, that alternative is simply not an option because our bodies do not respond to it. Having no access to the brand name and proper dosage of this vital medication puts our very lives at risk. Patient assistance programs exclude those who have any private insurance or Medicare coverage, regardless of whether or not the coverage gap causes undue financial hardship. The same is true for assistance for the cost of IVIG. If you have any insurance coverage at all, the full weight of the uncovered portion of the financial responsibility is on your shoulders alone. I contacted several private programs to inquire about financial assistance for IVIG treatments and other expensive medications, and each one I contacted had listings for specific diseases and specific medications for which donors had designated funds for financial aid. Unfortunately, neither Myasthenia Gravis nor IVIG...both of which could cause financial ruin in just a few short months...were on any of those lists.

So why am I writing about this extremely sensitive subject? I realize that I am presenting a problem with no idea of resolution outside of promoting awareness.  I guess I am asking for as many as possible to share this blog, to spread the word about Myasthenia Gravis and other autoimmune diseases; to collectively lift our voices so that someone, somewhere will help.