By Cynthia Toussaint
My healthcare company, United Healthcare, is once again making me sick – and I’m mad as hell because I hate to be victimized. How can they arbitrarily take away a medication that’s been successfully working for decades!?
About 30 years ago, I started having severe pain in the left side of my abdomen and throat. This was on the heels of a ballet injury leaving me with excruciating right leg pain that had spread bi-laterally. Nearly 14 years later I learned that I had Complex Regional Pain Syndrome.
While the leg pain made it impossible for me to dance – and for the most part walk – the abdomen and throat pain was more torturous because it left me unable to sing and even speak. I’m a talker and it was nothing short of hell to be doubled over with abdominal pain when I dared to let a sentence escape. In fact I ended up mute for five years using sign language and writing on a board to communicate with my life-partner and caregiver John.
I was eventually – after several endoscopies and different “crazy” labels – accurately diagnosed with a hiatal hernia which means my upper stomach was literally pushed out above my diaphragm. The pain was always at a level ten during those years as the accompanying acid reflux triggered a CRPS flare.
My GI doctor had me try three high-powered antacids, none of which controlled the reflux or pain and gave me extreme dizziness. He then patted me on the head, saying there was nothing more he could do and that I should stop thinking about it.
In desperation I sought out a young female doctor who was wonderfully caring. Dr. Gorman told me of a more expensive ant-acid medication that I should try. It was a miracle. The Axid immediately took away about 90% of the reflux and pain – and while limited from the CRPS flare, I was talkin’ up a storm again. Fifteen years later, I even began to sing.
Late last year I received a letter from my Medicare Part D provider informing me the generic version of the Axid I was taking (nizatidine) was no longer on their formulary. I was further informed that I’d have to switch to one of the three generics I’d unsuccessfully tried 30 years prior.
I could either accept one of these offered meds and once again become doubled over in pain and mute – or fight along with my doctor to get a “formulary exception.” I chose to fight. And, boy, did we fight!
On December 22, it seemed victory was at hand when my doctor’s assistant informed me that her office had received an approval for nizatidine. But earlier this month when John went to pick up my script, he was told I was not covered by my insurance company. Yes, they had reversed their own decision without informing me – a practice my doctor’s assistant shared is not uncommon and drives everyone in their office batty!
Clearly we were (and are) battling a rigged system, a healthcare-for-profit scheme that has no concern for me or any patient. It was only about the bottom line. I was scared because I only had two weeks left of nizatidine…and talking.
Since then my doctor has worked thoroughly with me to file two URGENT appeals on my behalf. Both appeals were quickly denied. Worse yet, I got the news from an automated caller. They didn’t even have the decency to have a human being hand down my sentence. Perhaps that would be uncomfortable for them. Perhaps it would cost them money.
I have two days left of talking – and my doctor has put in one final “hail Mary” appeal. Please pray for me…
This is complete, utter madness. We need a law that prohibits health insurance companies from cutting patients off from meds that have given them quality of life and a reason to live for years, even decades. I intend to take up this battle with the legislators I know in Sacramento and DC… assuming I’m able to speak.
Cynthia Toussaint, who founded For Grace, a Los Angeles based non-profit that focuses attention on women in pain, writes occasionally for the National Pain Report.