Tuesday, November 22, 2011
The Journey We Take Alone, Part Sixteen
By Alexander "Sandy" Prisant
I’m living with no kidney. Let me tell you what that actually means.
Getting through each day is a tedious, grinding struggle. There are too many little things that make you feel like you’re slogging through life in very heavy galoshes. From the 26 pills a day to the reduced immune system to a dialysis machine. For about 15 hours, night and day, I am imprisoned at home on a machine which keeps me alive.
Then there’s the anemia that often comes with kidney failure, because I don't produce enough red blood cells. When you’re anemic it just pulls you down. You can’t do anything; it just pulls you down all the time.
Anemia is one of those really shitty effects of kidney failure that often kicks in years before you actually lose your kidney. For over a decade now, I’ve been fortunate to receive a drug that counters the anemia. This is no small thing. It’s the difference between a working, functioning life and loss of interest. In everything.
In October of last year, I was invited by the National Kidney Foundation and the U.S. Food & Drug Administration to discuss the first national study on this drug; the study questioned the drug's efficacy -- flying directly in the face of my own experience with it over the years.
I participated in meetings at the center of power with doctors, administrators and very few laymen like myself. The hearings were the next harrowing step in a subjective decision process on whether to keep reimbursing Medicare patients for this vital drug—the only way they could afford it.
We live in an age when people are denied life-giving drugs for cancer and other serious diseases because the cost of treatment runs into the thousands of dollars per month. Unfortunately for me, this kidney drug—Aranesp—falls in this doomsday category.
Having for several years been one of the few patients on this drug created by Amgen, I was privileged to write a detailed rebuttal of the national Aranesp study in a major kidney journal. It led to my testimony before the powers of Washington.
I testified to the fact that Aranesp had bought me years of productive, fulfilling life. I fought for this drug that had kept me working full time and living normally---almost to the day of my final kidney failure.
But after the study came out, we faced the possibility that patients would be denied this drug purely because of cost. So it made me feel grateful on behalf of others like me to explain to the experts that you can’t gauge the effects of anemia on a graph. It’s not the numbers on a blood test. You can’t see anemia. It’s an all-encompassing fatigue that’s debilitating. “It’s a fatigue,” another patient said, “that is indescribable.”
Apparently this testimony had some effect. The FDA did not stop reimbursement for Aranesp. I felt good about that.
Until a few months ago I continued on Aranesp; despite all the difficult effects of finally losing my kidney function earlier this year, I still had that most important asset—the energy to live, write and overcome it all.
Surely if any patient was fully benefitting from Aranesp, it was me. I was a productive human being, not a drag on society.
Then it came time for a new approval from my insurer, UnitedHealthcare. This special drug requires an individual presentation from your doctor. In my case, three highly respected specialists—two department heads and the ex-President of the Medical Society -- made appeals to United on my behalf. They were flatly turned down.
Sadly, the patient, me, who had made the system seemingly respond was now being denied the drug. How ironic. I had fleetingly touched Washington’s wheels of power to help other patients. And a year later
Aranesp remains available for others.
But there is no more of this wonder drug for me.
And I feel it already.
Writer Sandy Prisant, who lives in Florida with his wife Susan, is awaiting a kidney and heart transplant. He has been writing his series, "The Journey We Take Alone," since March. Susan is writing her own series, "The Journey We Take Together," about their long marriage and many adventures living and working around the world. To read earlier posts, go to the Search function on MyStoryLives and type in their names.