Rx, Insurance & the M.S. Struggle

When a person has a preexisting condition the battle for insurance coverage and then the ensuing insurance cooperation is often nothing short of an endeavor. Over the years my experience has been a trial of patience and expression of ire. Multiple sclerosis ranks right up there with cancer in the eyes of the insurance industry. It is seen as a exorbitant never ending cost to their bottom line. Now I am only talking about health coverage because luckily I can get that through my husbands employer, but as for life insurance that I cannot attain. Too big and obvious risk for those companies.

Here is the fact- M.S. has no cure. M.S. has a variety of drugs now available to try to speed the recovery of attacks and to slow down the progression of the disease. These disease modifying drugs are far from cheap. The drug that I am currently on is Gilenya, it is a once daily pill. For a one month supply it costs $5,500.00. That is right people, $183.00 per pill.

The drug manufacturers do have programs to help fray the cost to the patients. That is determined by insurance coverage, income requirements, etc. This all works out wonderfully when properly set up but it can be a horrible stress trying to get it to that point, especially when your health insurance provider is changed as ours did this year.

I am on this particular drug because of problems taking many of the others available for treating this disease. Prior to finding a usable treatment I was having regular attacks, so regular that every six months my MRI’s showed more and more damage to my brain and spinal cord. I was using my wheelchair and walker predominantly and was having a shadow of the life I wanted with my husband and then 2 small children. I was put on Gilenya two years ago and it has done very well in keeping my illness in a kind of homeostasis. Rarely now do I need to use my cane, a night and day difference.

This medicine is essential for me. So when our insurance provider changed I contacted my neurologist and the new insurance company to make sure that getting my meds would be a non issue. HA! This drug must come from a specialty pharmacy through the insurance companies due to the expense and nature of it. One specialty pharmacy from one insurance company is, I have found, unwilling to work with the other. Over the last two weeks I have logged over 6 hours on the phone trying to get my medicine.

I am not saying that I have not had any help, in fact I had a wonderful woman from the current insurance company spend nearly the entire day on trying to get this figured out. Unfortunately she is an anomaly. She played go between for the two companies and the neurologist’s office and after hours managed to get the prescription to the current insurance company’s specialty pharmacy. She even managed to get it classified as a urgent order.

The specialty pharmacy said they would call the next day to arrange delivery. The next day comes and no call. The saga continued but from that point I no longer had that wonderful woman from before as my advocate and go between.

I truly miss her.

I called to see how things were progressing with my prescription order. Every day I have had a different person on the phone, each time I’d have to recall what I was calling about and what had already happened. Each time the person on the phone would read through all of the noted made on my account and then put me on hold. Then they would take me off of hold to ask if they could put me on hold so they could transfer me to another department. Finally after a number of holds and transfers I would end up at what should have been the last link in the chain, the area that should have my medicine and should be able to say ‘yes we have it and its on its way’.


The procession would lead nearly to the end of the chain with an individual who was more or less apathetic to the fact that my health is deteriorating without this med. These end of the chain individuals would merely inform me that they have it, it is in cue, and it is in the verifying script process. Basically I have spent an excessive amount of time wondering and waiting on whether or not i will get my very much needed meds.

As I write this today I am more or less confined to my bed. It has been two weeks without this rx and my multiple sclerosis is reliving it hay-day in much of it’s horrible glory. My legs have become heavy blocks of icy stone, I am weak and fatigued, and I have all the balance of a drunken three legged cow on a unicycle. My husband and boys have to aid me about the house to keep me from falling. All of this indignity because of a medicine and a company desperately trying to avoid it’s own responsibilities.

I would never wish this or any disease on anyone. But I am getting to the point where I wish the heads of the insurance industries could spend one day in the body of those who are infirmed by something more uncomfortable than a sore bottom from sitting on fat wallets. Perhaps then the care for individuals, no matter the infliction, would not be so easily disreguarded.



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