Saturday, June 7, 2014

Live or Die; Only Your Insurance Knows

After several days of trying to receive the correct dose of Sprycel, the pharmacy called with the good news; “Your prescription is ready, would you like to have it delivered?” Of course my answer was yes, duh! The gal on the phone promptly confirmed my address and said, “How would you like to pay the   co-pay of $598.63?”

My heart literally dropped; my co-pay has always been $25. I have always felt fortunate to have decent health insurance coverage through my husband’s retirement plan, but I never realized how grateful I should have been. I told her that that was impossible, and that my co-pay was, and had always been $25. During the past two years nothing had changed; why was my co-pay now totally unaffordable?

She seemed baffled as I argued with her; I insisted that she speak to a supervisor and to call me back. About an hour later, she called me back and told me I was correct, that my co-pay was $50, not $598.63. $50? It WAS $25. I know that $25 may not seem like a big deal to some, but in the larger scheme of things, it is a big deal to me!

I continued to argue and question the $50 copay and she stated that the assistance that I “used” to receive directly from Bristol Mayer Squibb was no longer an option, and insisted that the co-pay was $50. I relented and am having me medication delivered the first of the week. Just know, I am not giving up yet!

That being said, I have been so close to tears since those phone calls. I realized, for the first time, just how precarious living with CML can be. I realized that at any given moment, or month, my insurance may no longer pay for my medication, for reasons completely beyond my control. My life is literally held in their hands.

It is a sickening feeling that each and every month could be the beginning of either the end, or a really difficult battle. I have extreme empathy for those that are in this same situation; it is scary, it is real and it is eye opening. We all live on a tightrope that may snap at any time. This one incident has really brought my chronic disease, once again, to the forefront of my mind.

I will never take my monthly prescription for granted again, and I will be researching all of the options available to me, and my fellow CML’ers.

Now, if I can just get that sick feeling out of my gut, and can get on with my day.


  1. Thanks for sharing your thoughts. It helps me better understand why so many CML patients don't seem to give a damn about other CML patients whose lives have been turned upside down by drug prices since diagnosis and why so few CML patients bother to get involved with efforts to bring oral parity laws to individual states and to the country as a whole. Co-pays in the several hundreds or several thousands of dollars are far more common than you may realize, and far too many cancer patients are forced into poverty to be eligible for government programs in the US that cover CML care which is often substandard.

  2. You're welcome, and yes it seems that even with "good" coverage the price that we must pay to live really impacts our daily financial status.

  3. I am very glad to live in MO, where just this January a law went into effect setting a cap of $75 for co-pays for oral chemotherapy. Right now I have a prescription card from the sprycel company and only have to pay $25, but worry about insurance. My insurance right now is fantastic, but is from a cobra plan from my former husband who died. It ends next March...


Bricks for the Brave!!