If you were sick and felt horrible for four hours every day, what would you be willing to pay to feel good? For those four hours, it is difficult to talk, get out of a chair, eat and you ache all over. That is how the wear-off period with Parkinson's disease feels. It is the wear-off period between taking the next pill. There is a way to modify the discomfort, but it comes at a substantial cost.
The solution is Duopa. It is a method of getting the dopamine to the brain more efficiently than pills by bypassing the stomach. That is accomplished by the use of a tube surgically implanted in the small intestine. A device attached to the tube feeds a steady stream of dopamine into the patient’s system.
Here's the situation. I was fixing breakfast for my wife Chris and I, and the oral medication kicked in between cutting up two oranges. If you had been observing me, here is what you would see. I tried to cut up the first orange. I was not able to peel it, so I tried to cut it unsuccessfully into sections. Chris came into the kitchen and cut up the orange with no difficulty. Then the drugs kicked in. The feeling is what you would imagine a biblical cure would feel like. Minutes after Chris had to peel her own orange, I was easily able to peel and section an orange. The wear-off periods generally last two to three hours twice per day.
The Duopa system has been available in Europe since 2001. It became available in the U.S. this year. So, there are 16 years of use to assure Duopa is safe and effective. You may have wondered why it took the FDA 16 years to approve a drug device that would add substantial amounts of pain-free and productive time to millions of people's lives. Add that to a million other things that make no sense in this country.
Finally, I am to my point. I cannot verify the cost due to the short period of time the method has been approved. One source estimated about $10,000 a year, another pegged the number at $6,400 a month. I called Walgreens and my health insurer and neither had a number. So, it appears to cost between $10,000 and $76,000 per year. So, for that cost, I could add 1,460 hours of productive time to my year. At $10,000 per year, the cost per hour would be $6.85 of restriction-free living. At $6,400 per month, the cost per hour is $52.05. That's the math. Now, we need to look at what's the benefit?
If I had those extra four hours a day, I could dedicate more time to caring for Chris, who has Alzheimer's. I could expand my driving range from the neighborhood to the beaches at Grand Haven and, maybe, to our farm in Cheboygan. Time is viewed as expendable by the healthy. It is severely limited by those with neurological illnesses. It is limited for both. Healthy people just don't know it.
Somewhere between $10,000 a year and $76,000 a year according to The Medical Letter is the cost estimate. Obviously, the higher the cost the more significant in tradeoffs for those additional hours. At the bottom, the tradeoff is eating out, vacations, etc. At the top, you may see me at Meijer with a placard pleading for financial aid.
When you are planning for retirement, it is almost impossible to build such events into your plan. Some of these medical decisions may be life-preserving. I have asked what the point is to develop these medications if only a few people can afford them. The universe has failed so far to answer my query.
This dilemma cuts to the heart of time management. You can hire an assistant, improve productivity through technology, etc. That creates more productive use of the time you have. What if you could add four hours a day to your life? What would you do with that time? I think what you would do with that time would determine what you would be willing to pay for it.
Paul Hense is the retired president of local accounting firm Hense & Associates and past chairman of the Small Business Association of Michigan.