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.


Anonymous said...

And, yet, at a recent doctor's visit I was strongly encouraged to have expensive tests done that I did not want. I argued that I had no history of problems and no family history. Most the the visit was spent on this subject.

My point, that my refusal was a small attempt to keep insurance costs down, was met with this response: "You don't have to pay for it. The insurance company does." Do most people not see the bigger picture?

I'd rather my insurance company spent the money on something that a member definitely NEEDS such as the drug you write about. Shouldn't the disease we know can be treated be more important than searching for one we might have? I'd also rather my two adult children were able to afford to HAVE health insurance.

Dr. Mel Waldman said...

Dear Sandy Prisant:

Yesterday, I celebrated Thanksgiving with my wife and a few relatives. After surviving 67-years of my enigmatic life, I gave thanks for being conscious, alive and kicking, although trapped at times in a body flooded with pain, and still delighted by the sense of awe and mystery I feel when I ponder the metaphysical and existential questions of life. I still look up at the stars with wonder and amazement. And I humbly acknowledge my insignificance in this vast universe.
I also gave thanks for being fearless in my senior years. And thus, I was saddened by your recent update of your story and outraged at the injustice you experienced. United Healthcare’s refusal to pay for Aranesp, a kidney medication that combats a debilitating fatigue, is unconscionable and criminal.
Allow me to digress for a moment. In the sixties, I dreamed of a world of peace and love-a utopia. Two of the beautiful values of that decade were an idealism and anti-materialism that remain unparalleled. People seemed to care more about spirituality than the almighty dollar. Unfortunately, what you have described is dystopia.
Yes, you have discovered dystopia. I stand at its gates. Your brothers and sisters in the U.S.A. and around the world are living inside this wasteland or at the gates beside me. What shall we do?
We must protest peacefully. We must speak out. We must express our outrage. We live in America and we have freedom of speech.
I’m an old fashioned guy. I passionately believe that I am my brother’s keeper and that we’re all connected. I can’t feel your physical and emotional pain. But I’m certainly acquainted with suffering. I’m no novice in this area.
Hold on, Sandy. Reflect, meditate, and pray. Your family and friends and the rest of us need you to remain in this world and flourish. You make the world a better place.
In the past, I’ve often protested to those close to me that managed care has murdered the mental health field and healthcare in general. And unfortunately, it has particularly targeted and punished the poor and middle class.
Now, I speak out and talk about the emperor’s new clothes. The emperor’s naked. And Managed Care companies have killed and continue to kill people. How many? I do not know. I believe that many have died. How many more must die before rational, humanistic changes occur?
I don’t know the full power of prayer. At times, it has kept me sane in an insane world. Sometimes I believe I am crying out to an unknowable G-d, Hashem (The Name). Sometimes I believe I am talking to my Higher Self. At this point in time, I believe that Hashem exists. And thus, I will pray for you. Keep plugging, Sandy Prisant. The fight’s not over.


Dr. Mel Waldman