The Financial Burden From Parkinson’s Exacts a High Cost

Jo Gambosi avatar

by Jo Gambosi |

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Caregivers for people with Parkinson’s disease (PD) know the physical and emotional toll it exacts on those who suffer from it. The financial burden from Parkinson’s disease is less well known.

My sister Bev has stage 3 PD and struggles with balance, cognitive, and falling issues. She also struggles with finances because she has used up most of her retirement funds and has no pension. So, she is dependent upon her Social Security income and her children and me helping with expenses.

“I would never be able to pay expenses on my own without the help of others,” she says.

In some ways, she is lucky. While her Social Security income is low, she has wonderful health insurance from the Cleveland Clinic health system, from which she retired shortly before she was diagnosed with PD. And even though some of her medications have a high co-pay or aren’t covered by insurance, Bev gets one of them directly from the pharmaceutical company without charge because of her income. The application has to be submitted yearly for approval, and a physician’s order is required.

The cost continues to grow

An estimated 1 million people have Parkinson’s disease in the United States, and more are diagnosed with it each year, many of them 65 or older. The prevalence of PD also has increased among people younger than 65.

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According to a study by the Lewin Group and supported by the Michael J. Fox Foundation and the Parkinson’s Foundation, about $25.4 billion was spent in the U.S. each year as of 2017 on direct medical costs of PD, and another $26.5 billion was lost in missed work, lost wages, early forced retirement, and family caregiver time. A separate study projected the economic burden of PD will exceed $79 billion by 2037. It called the disease an economic burden to “society, payers, patients, and caregivers.”

Take steps early

Because of the high costs of the disease, those who have been diagnosed with PD should take steps to manage their finances. They should develop a financial plan and a budget. The assistance of a financial planner or accountant can help them understand how their retirement savings or pre-retirement savings will be affected by the disease.

They should also familiarize themselves with their medical expenses, including medications and other treatments.

Long-term care needs will likely change as the disease progresses, and both at-home care or a long-term care facility can impact finances. So, PD patients who are not at retirement age may want to investigate short- and long-term disability, or apply through Medicaid.

Lastly, PD patients should not neglect estate planning. It is important to have legal documents in place, such as a trust, a living will, healthcare power of attorney, and durable power of attorney, to prepare caregivers for end of life. It is important to keep in mind what these efforts could cost. Fortunately, through my church, I was able to have a trust put together for Bev at her request without having to pay a fee.

Because no one knows what the future might hold for those with PD and their caregivers, planning and managing your finances are necessary, lest they become another unwelcome burden.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

LouAnn Redaelli avatar

LouAnn Redaelli

Great article Jo! It is beyond comprehension, given the outrageous cost of health care, why anyone would have to worry about "how am I going to pay for this" on top of the having to deal with the disease or diseases themselves. None-the less, planning for the future is necessary!

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Joanne Mengel avatar

Joanne Mengel

Financial planning for a Parkinson's patient is not always possible. My sister stopped working to care for a dieing partner, took in an ailing former husband, who left her with debts, Now she is 73, diagnosed with PD, with Soc. Security income of less than $14.000 per year, living in a tiny 2-story row home in Lancaster, PA, with no transportation except a dear neighbor who takes her grocery shopping. She spent her retirement savings to pay for the home, which needs much repair work. Her symptoms are getting worse (tremors, weakness on her left side, slow gait, little ability to write, open cans and packages, poor balance, frequent falls. She cannot relocate to a safe place to live, for financial reasons.
I am 82, in Ohio, unable to visit or help, and worried for her future.

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margaret avatar

margaret

Those younger like in their 50s and 40s and ineligible for Medicare are in an even worse position. It's too late to obtain disability or long term care insurance after diagnosis, which is usually what happens because younger people like me aren't expecting such a diagnosis but rather think it's orthopedic. etc. And if they eventually can't work, there is no health insurance available and Obamacare plans frequently do not include specialists needed. There are no movement disorfer specialists on any such plans in my county. I don't know what I'm going to do except bankrupt my family, and it makes me sick to my stomach every day to think of it.

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