For years now, we have been hearing politicians in the United States talk about health care reform and yet, they cannot arrive at a bi-partisan agreement of how to bring down costs and improve access to care, in part, because as any of us who have spent our careers working in health care know, it’s complicated. Access to care must mean good care, appropriate care for your condition, provided by knowledgeable providers, and not subject to the restrictions imposed by insurance providers who know nothing about your needs or medical diagnosis.

 Who Will Pay?

Individuals with chronic diseases such as diabetes, heart disease, and Parkinson’s cost the healthcare system billions of dollars in medications, hospitalizations, re-hospitalizations, surgeries and rehabilitation therapies. By definition, chronic disease cannot be cured, so hand in hand with treatment must be prevention strategies as a means of improving longevity, reducing the risk factors associated with chronic disease, and reducing costs.

Reportedly, Neurological disorders are now the leading cause of disability in the world, and the fastest growing is Parkinson’s disease (PD), whose growth is surpassing that of Alzheimer disease.[i] The Global Burden of disease study estimates that the current number of people with PD (6.9million) will double to 14 million in 2040.

It is stunning to read that in wealthy nations such as the United States, more than 40% of individuals older than 65 years with PD do not see a neurologist, and those who do not are more likely to fall, be placed in a skilled nursing facility, and die. In less wealthy nations, many individuals with PD are never even diagnosed,  lack access to neurologist, medications, and even common devices such as canes and walkers which could reduce fall risk, and toothbrushes which could improve oral hygiene and reduce aspiration risk associated with swallowing problems.

In 2019, the Michael J Fox Foundation published critical findings on the economic burden of Parkinson’s reporting that the total cost of Parkinson’s disease to individuals, families and the United States government is $51.9 billion every year, with $25.4 billion attributable to direct medical costs (e.g., hospitalizations, medication) and $26.5 billion in non-medical costs like missed work, lost wages, early forced retirement and family caregiver time.[i]

The study also revealed that the federal government alone spends nearly $25 billion annually in caring for people with Parkinson’s. About $2 billion of that is shouldered by Social Security, and the remaining $23 billion is in Medicare costs since an estimated 90 percent of people with PD receive Medicare benefits. A sobering statistic if you are a 40 yr old newly diagnosed with Parkinson’s, in the prime of your career, raising a family, and trying to afford health insurance in the marketplace, bringing with you an undesirable pre-existing condition.

Why Should We Care?

If you were invited to speak to a local organization about Parkinson’s disease, what would you want people in your community to know? This is a question I often pose to members of a weekly speech class.

Rarely have I ever had members say that they want people to know that they have an expensive disease. A disease, if the statistics are right, that over the next 20 years will drain Medicare and Social Security. 

Rather, a frequent response to my question is: “we want people to know that we didn’t do anything to get Parkinson’s,” and indeed, this is true. Much in the same way, no-one expects to get a diagnosis of cancer, diabetes, ALS, or the myriad of other chronic health conditions. But I think it’s safe to say that we all expect to be able to receive and pay for treatment for any illness we might acquire.

So perhaps, the concern we have about the rise and cost of Parkinson’s disease could serve as common ground for genuine discussion about how Americans might have better access to care while at the same time controlling costs. After all, a disease that has no regard for age, party affiliation, color of skin, or ethnicity, should be able to facilitate meaningful solutions.

Disease education,government and private funding for research, prevention strategies, community-based programs and exercise classes, affordable medications, early referral to therapy (Speech, Occupational, and Physical therapy); and subsidies for home care are just a few things that might help people living with PD. These are not cost-free measures, but they are measures that if undertaken may help reduce the burden and cost of care of this growing disease.

[i] 1. Global Burden of Disease Neurological Collaboration. Global, regional, and national burden of neurological disorders during 1990-2015: A systematic analysis for the global burden of disease study 2015. Lancet Neurol.


Barriers Faced by People with Parkinson’s Globally

As I watched the devastation to the Bahamas Islands this summer from Hurricane Dorian, I wondered what happened to the people living on the islands with Parkinson’s and other chronic diseases. Especially, I wondered about people who may already have few resources, now living in catastrophic conditions.

The World Parkinson’s Program is a Canadian not-for-profit charitable global organization, founded by world renowned Canadian neurologist, Dr. A.Q.Rana, in 2008.  WPP’s mission is to improve the lives of those affected by Parkinson’s disease through education, advocacy, and providing free medication and supportive services. “Our core belief is that every individual with Parkinson’s disease should have access to medication, education and any other supportive services that will improve their quality of life regardless of where they are in the world.”     

 To learn more or to donate visit:

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My Mission:To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate  and empower. Mary Spremulli, MA, CCC-SLP  *  FiTOUR® Group Exercise Instructor * Voice Aerobics® A Whole Body Approach to Voice Practice

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