Parkinson's Cost Burden Pegged at $50 Billion a Year

Alicia Ault

June 14, 2019

A new study suggests that the direct and indirect costs of Parkinson disease have been vastly underestimated and that the federal government is picking up a larger part of the tab than previously thought — which has implications for research spending and the economy.

Parkinson's is the second most common neurodegenerative disorder. The study determined that it affects 1 million Americans — a new, more concrete number — and leads to $25 billion in direct medical costs and $27 billion in nonmedical costs, including missed work, lost wages, early forced retirement, and family caregiver time. The new cost figures are almost double previous estimates.

The Michael J. Fox Foundation commissioned the study, which was conducted by the Lewin Group and was financed by several foundations and a handful of pharmaceutical companies.

It is the first study to take a close look at how Parkinson's affects an individual's finances and ability to participate in the labor market, said the foundation.

It had earlier been estimated that 500,000 to 1.5 million Americans have Parkinson's, said Ted Thompson, JD, senior vice president for public policy at the Michael J. Fox Foundation. The range made it difficult to determine how much the government, payers, and patients were actually spending.

"Policy makers absolutely need hard data, so that's what prompted us to do this study," Thompson told Medscape Medical News.

The study found that Medicare spends $23 billion on caring for Parkinson's patients and that Social Security is funding another $2 billion.

"I don't think Congress knows that 90% of the people are on Medicare and that it's a $25 billion a year cost to the federal government," said Thompson. "We think that should help create some momentum for pushing for more Parkinson's research," he said.

Thompson noted that the Michael J. Fox Foundation has funded some $800 million in research since its inception in 2000, while the federal government has only spent a little under two times that amount each year. The National Institutes of Health spends about $160 to $170 million a year on Parkinson's.

"This data will help facilitate a new level of outcome-driven conversations with Members of Congress who oversee federal programs that affect the lives of the one million people with Parkinson's in the United States," said Todd Sherer, PhD, CEO of the Michael J. Fox Foundation, in a statement.

"Investing more in research toward better treatments and a cure will ultimately relieve the burden on already-strained programs like Medicare, Medicaid, and Social Security," he said.

Medical Cost Components

The study showed that the excess per capita direct medical costs for people with Parkinson's ranged from $26,000 a year for those living with the disease who were older than 75 years to $29,000 for those diagnosed when younger than 49 years.

Medicare spends an average $24,811 a year more for a beneficiary who has Parkinson's, the report shows.

Overall, the largest spending category — accounting for almost a third of all medical costs — is hospital inpatient care ($7.19 billion). Close behind is nonacute institutional care, at $7.14 billion annually, followed by outpatient care, at $5.5 billion. Prescription drugs account for 16% of spending, at $4.1 billion.

Physician office visits are tiny by comparison — only about $1.2 billion a year.

Medicare covers 90% of these expenses; private insurance pays about 7%; and Medicaid, other insurance, and the uninsured pays 3%.

Cost to Patients and Caregivers

The study took one of the closest looks yet at how Parkinson's affects people living with the disease and their caregivers. The Lewin Group used the Michael J. Fox Foundation database to reach out to people with Parkinson's. It received almost 5000 responses, 4548 of which were used to calculate the indirect costs.

"There are a lot of surprise costs when you have Parkinson's," said Steve DeWitte, a Parkinson's research funding advocate from New Preston, Connecticut, in a statement.

"Beyond the rising costs of medications and healthcare, my family has shouldered the financial burden of my having to leave the workforce 15 years earlier than I had planned," he said. "That means our income dropped by more than half, and we've had to figure out how to stretch our budget to cover the everyday household tasks I can no longer physically do."

Overall, the report showed that the total indirect and nonmedical cost is $26.5 billion; $20 billion is attributable to lost wages, lost productivity, disability, and other factors for people with Parkinson's. Almost $7 billion was attributable to the impact on unpaid caregivers.

Of the survey respondents, 3098 were people with Parkinson's (67%), 1264 were caregivers (27%), and the remainder were close friends or family members other than caregivers. The sample is predominately white, reflecting the disease's demographics. Non-Hispanic blacks were the least represented in the survey, Lewin said.

Almost 60% of the respondents had been diagnosed more than 5 years ago; 32% had had the disease for a period of 1 to 5 years; and 4% were newly diagnosed. The Lewin Group had trouble getting responses from patients living in facilities; the vast majority — 92% — of respondents lived at home alone or with a family member.

Eighty-one percent of those with Parkinson's were aged 65 years or older; 57% were men; and 89% were non-Hispanic whites. Two thirds of people with Parkinson's received care from an unpaid primary care partner in the past 12 months, and 18% received unpaid care from a secondary care partner.

The primary caregivers were older and were primarily women. Sixty-nine percent of the primary caregivers were older than 65.

The older age of both those with the disease and their caregivers would explain why only about 5% of the persons with Parkinson's, 3% of the primary care partners, and 1% of the secondary care partners reported that they were no longer working and that the disease played a major role in their decision to stop working.

Still, the report estimates earnings loss of $1.87 billion for people with the disease, $716 million for primary caregivers, and $86 million for secondary care partners.

The highest earnings loss occurred among men aged 50 to 74 years, because the disease is more prevalent among men and men earn more, the report states. Among primary caregivers, women aged 50 to 74 incurred the highest earnings loss, primarily because they are most likely to be primary care partners.

"These results provide deep insight into the indirect costs — those costs the people living with Parkinson's and their families must shoulder alone," said Parkinson's Foundation Senior Vice President and Chief Scientific Officer James Beck, PhD, in a statement.

"Knowing this information will allow us to better serve people with Parkinson's and their families in the areas they're most concerned about and where we can have the most impact," he said.

The study was conducted and published with support from the American Parkinson Disease Association, the Parkinson Alliance, the Parkinson's Foundation, AbbVie Inc, ACADIA Pharmaceuticals, Acorda Therapeutics, Adamas Pharmaceuticals, and Biogen Inc.

The Lewin Group. Economic Burden and Future Impact of Parkinson's Disease: Draft Report. Released June 12, 2019.

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