The Financial Cost of Parkinson’s Disease
With the fate of healthcare coverage very much in question and a relevant topic of debate among our members of congress, I would like to share some information from a nonpolitical-patient perspective without delving into partisanship or numbers and statistics which quite possibly could and will change as the neo-political debate ranges on. The purpose of this article is not to join in the never ending and divisive political argument that dominates the news, but to prompt dialogue that will inspire thought and spur action that affects us all.
Advocating for the cost of Parkinson's
Before we begin, I need to share that for about the last 15 years, my wife (Gretchen Church), also a Parkinson’s patient, and I have been public policy advocates which is to say we are like unpaid lobbyist only without the credentials and requirements. We advocate because we know what it’s like to live with PD, and we give our disease a voice so those who control federal funding of research toward better treatments and possibly a cure hear our message. This is important stuff and members of congress need to hear from us about what it is like to live daily with PD. Most people can’t comprehend what it is like to live with PD, but at least we can create awareness about the money spent by our government for life providing research for new drugs, surgical procedures, medical devices, and other therapies. It is extremely hard on our bodies to travel to Washington, DC to address our legislators; therefore, we sometimes meet with them in their local offices. It is very rewarding work.
The true cost of research
The National Institutes of Health - the largest federal funder of scientific research - receives an annual budget of about $32 billion and awards grants to public and private institutions around the country. These institutions are charged with spending that money responsibly. The amount of NIH’s budget attributed to PD alone is about $146 million. This money is given through grants to fund clinical trials all over the world working on PD related research. Federal funding also accounts for the process of achieving FDA approval of new drugs and therapies. This doesn’t account for the private funding from outside sources provide. Our ongoing advocacy ensures that funding for PD research does not decrease and continues to provide hope to those waiting on a cure.
Your personal story
Living with PD is not easy and many times takes an emotional toll on those doing so. Medically, we know that PD may cause depression, fatigue, apathy, digestive and respiratory issues, and more. Often these matters result in treatment by another medical specialist which increases the cost of care. Then there is the loss of productivity which can lead to job loss or filing for disability benefits. For individuals, each of us has a unique story about living with PD and how it affects us. The cost of insurance which is a hotly debated issue recently as we compare compassionate care to comprehensive coverage and the cost association with that. I have maintained for years that quality healthcare is not cheap and that most people regard essential coverage a high priority in their budgets. That being said, it would benefit our federal government and its citizens to get it right because the health cost of treating those living with a chronic, progressive disease like Parkinson’s is, in the long run, much more affordable at early onset then it is to treat at end stage where more aggressive and life sustaining methods are employed.
It is in my opinion that treatment for Parkinson’s disease should involve a multi-disciplinary approach hence neurology, gastroenterology, pain management, pulmonology, psychology, and other disciplines for the wholeness of health and to live successfully with PD. The cost of living with PD is relative, and - if addressed on the front end of first onset - it outweighs the cost of dealing with the costs associated with end of life care (which is very costly!).
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?