[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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