[Congressional Record Volume 165, Number 162 (Tuesday, October 15, 2019)]
[Senate]
[Page S5786]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
PARKINSON'S DISEASE
Mr. VAN HOLLEN. Madam President, today I wish to discuss the impact
of Parkinson's disease in the U.S. and across the world.
While significant progress has been made in managing certain symptoms
and identifying potential risk factors, we still lack a clear
understanding of the underlying causes of Parkinson's disease. To that
end, I continue to support the strongest funding possible for
biomedical research under the National Institutes of Health and its
Brain Research through Advancing Innovative Neurotechnologies--BRAIN--
Initiative, as well as the Parkinson's Research Program at the
Department of Defense. These investments are necessary to sustain
efforts by our Nation's scientists at the helm of innovative research
and discovery, with the hope and resolve that we will one day find a
cure.
I would like to highlight a recent study entitled ``The Economic
Burden of Parkinson's Disease,'' which was brought to my attention in a
meeting with constituents led by Dan Lewis, a longtime advocate for
Parkinson's research. Commissioned by the Michael J. Fox Foundation for
Parkinson's Research, this study places the annual economic impact of
Parkinson's at $52 billion in 2017, nearly double the previous
estimates. Approximately half of that total reflects the medical costs
of Parkinson's patients, primarily paid by Medicare.
The other half reflects the real indirect costs shouldered by
patients with Parkinson's, their caregivers, and our society. The
effects of living with Parkinson's disease permeate so many aspects of
patients' lives, from personal finances to workforce participation to
caregiver time and effort. With a rising aging population, the burden
will only grow from here; the number of people with Parkinson's disease
is projected to double by 2040.
By shedding light on the human and societal impact of Parkinson's,
this study illustrates the critical need for sustained research toward
better treatments and a cure. I ask unanimous consent that this study
be printed in the Congressional Record and encourage all Senators and
staff to review it.
Thank you.
There being no objection, the material was ordered to be printed in
the Record, as follows:
[From the Lewin Group, July 5, 2019]
Economic Burden and Future Impact of Parkinson's Disease
Executive Summary
Parkinson's disease (PD) is a slowly progressive
neurodegenerative disorder that affects approximately one
million Americans. In addition to the debilitating symptoms
of PD itself, patients also experience a number of
comorbidities, such as anxiety, depression, increased rates
of infection, cardiac and gastrointestinal diseases, and
injuries from falls. As a result, individuals with PD have
higher medical needs, often miss work, retire early, and
require the assistance of a caregiver. As such, the direct
and indirect economic burden of PD is likely to be
significant.
As part of its initiative to understand the economic burden
of PD, the Michael J. Fox Foundation commissioned The Lewin
Group to estimate the economic impact of PD in the U.S. in
2017. This study aims to provide the most comprehensive
assessment of the total burden of PD to date, including
filling the knowledge gap in some of the less well-understood
cost components, such as future earnings loss due to
premature death, productivity loss in both the labor market
as well as in social life, and caregiver burden.
Study Highlights
This study provides the most comprehensive assessment of
the economic burden of PD in the U.S. in 2017. The estimated
total economic burden of PD in 2017 was $51.9 billion,
including a direct medical cost of $25.4 billion and an
additional $26.5 billion in indirect and non-medical cost.
These findings show that the true impact of PD has been
previously underestimated in the literature (see the
Discussion section).
Another highlight of the study is the Social and Financial
Impact of Parkinson's Disease Survey (i.e. the PD Impact
Survey). This primary survey was specifically designed and
administered for this study to deepen the understanding of
the full spectrum of PD impact. The survey was able to
collect detailed data on a broad set of indirect and non-
medical costs of PD that were previously unavailable,
especially the impact of PD on unpaid caregivers. This survey
was one of the largest surveys conducted so far on relatively
rare neurodegenerative diseases and received almost 5,000
responses from the PD community.
Study Findings
PD prevalence estimated using nationally representative
surveys for younger and elderly U.S populations revealed a
much higher prevalence than previous literature. Exhibit ES-1
shows the estimated PD prevalence:
An estimated 1.04 million individuals in the U.S. have PD
in 2017.
PD is much more prevalent in the 65 population than in the
younger population. More males than females have PD .
PD prevalence rate is more than double among non-Hispanic
White compared to other groups, although this result is not
risk-adjusted and is subjected to small sample size
limitations.
Vast majority (89%) of the persons with PD are eligible for
Medicare. Among the estimated 919,000 individuals eligible
for Medicare coverage, 82,000 (9%) are younger than age 65.
PD is associated with significant amount of excess medical
cost: $25.4 billion in 2017, higher than the previous U.S.
based estimates. Exhibit ES-2 shows the estimated direct
medical cost of PD.
The vast majority of the medical cost of PD is borne by
populations with Medicare coverage (90%), 7% by those with
private insurance, and 3% by those with other insurance
including Medicaid, other insurance, or no insurance). Note:
the five-year combined MEPS data identified a total of 20
PWPs who are in the Other group, the small sample size
prevented further breakdown.
On average, the excess medical cost of PD is $24,439 above
not having PD. Average per person excess cost is $22,671 and
$19,489 for the privately insured and Other group of persons
with PD who are younger than 65 years of age, respectively;
and $24,811 for the Medicare beneficiary population with PD.
Hospital inpatient care, non-acute institutional care
(including SNF, nursing home, hospice, etc.), and outpatient
(including ancillary care) are the three largest cost
categories.
The estimated total indirect and non-medical cost of PD is
$26.5 billion in 2017, with near $20 billion to persons with
PD and another $6.6 billion to unpaid care partners. Exhibit
ES-3 shows the estimated indirect and non-medical cost of PD:
Average indirect and non-medical cost per PWP is $19,242
for PWP only and $25,558 for PWP combined with caregiver
burden.
Total indirect cost is $14.2 billion with the combined PWP
and caregiver absenteeism cost being the largest share,
followed by presenteeism cost and premature death related
earnings loss. The cost of absenteeism and presenteeism for
the care partners even surpass those for the PWPs.
Total non-medical cost is $7.5 billion with the paid non-
medical daily care being the largest share, followed by home
modification cost.
Disability income, although considered transfer cost, is
approximately $4.8 billion.
The full report can be found at https://
www.michaeljfox.org.
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