How Much Does Parkinson’s Disease Cost? New IHS Report Indicates Burden on US Families

This week, a report conducted by IHS-Global was published in the journal Movement Disorders, providing the most comprehensive, economic analysis to date of the direct and indirect costs of Parkinson’s disease to individuals and society in the United States.  (In full disclosure, it was underwritten by the Pharmaceutical Research and Manufacturers of America).

While certain premises within the report – most notably, the estimate of the overall prevalence of Parkinson’s in the United States, which is probably on the low side  – may be uncertain, most of the numbers are well thought through and carefully applied to the known data.

Implications for Research Funding
The Parkinson’s community – through a statement prepared by Amy Comstock Rick, CEO of the Washington-based Parkinson’s Action Network, and co-signed by the other leading Parkinson’s organizations, including the Parkinson’s Disease Foundation– has correctly noted that the main policy implication of the study is that we as a society should be prepared to invest more money on the “front end” of the process – that is, in research aimed at understanding, easing and ultimately eliminating Parkinson’s disease – to save the medical, maintenance and lost-earnings costs of the on the “back end.”

It is striking to reflect, as Amy’s statement makes clear, that the estimated total of research funds invested directly on Parkinson’s-disease related research is a mere one percent of the annual economic “burden” of the disease, as estimated by IHS.  It needs to be more.

A Key Issue: Nursing Home Care
The report also raises the issue of high cost of health care for people with Parkinson’s.  Since much of this is for areas that are not covered by most Medicare and most private insurance plans, the burden of these costs falls primarily on individuals with Parkinson’s and their families.  One of the most striking statistics in the IHS report is the burden of nursing home care, estimated by the authors as a whopping $4.6 billion dollars a year – almost three times the cost of hospital care for the same population. (It is worth noting that if study indeed underestimates how many people live with Parkinson’s in the US, these costs are in fact higher.) Nursing home care, like many other areas of care needed by people who live with a chronic disease like Parkinson’s, is generally poorly covered, and the literature abounds with stories of families who find themselves forced to go on Medicaid to take get support for a family member who is afflicted.  Simply put, a humane society needs to do a better job in providing for the needs of people afflicted by chronic disease.

We congratulate the authors on their contribution and hope it will enliven the national conversation about public support of research and care for Parkinson’s and other chronic diseases.

A Positive Spin: Creativity and PD

We all appreciate the headlines that help us understand PD symptoms and side effects. But we also find it refreshing to see last week's selection of stories covering ways to take charge of PD with creativity.

Victoria Tane featured in the 2013 Creativity & Parkinson's Calendar

The Science Behind the Spin
Last Thursday, we saw a review published on, "The Awakening of Artistic Creativity and Parkinson's" by Rivka Inzelberg, M.D., in Behavior Neuroscience.  Dr. Inzelberg looked at more than 10 studies investigating, "the ability to produce innovative aesthetic works" in people living with Parkinson's.  She found that:

• People with PD who are not already artistic, may became so when treated with certain PD drugs,­ namely dopamine agonists and levodopa. 
• Creativity could be used by occupational therapists as a method to help people with PD.
• The relationship between PD treatments and creativity may help to scientists to understand artistic creativity generally.

The People Behind the Project
In second headline, we saw a real life example of creativity and PD. PDF's own Creativity and Parkinson's Project artist, Victoria Tane, was profiled in a Union Leader article you can read here.  Victoria was diagnosed with PD in 2010.  As an artist and jewelry maker since the 1980s, she has found her creativity a positive way to cope with PD. Victoria's jewelry, "Bits and Pieces ­- Six Geometric Bracelets," was chosen as the featured work of art for the month of February, in PDF's annual wall calendar. The calendar is a part of PDF's Creativity & Parkinson's Project which exists to explore, support and encourage the therapeutic value of creativity in Parkinson's.

The One Day Vote
As part of our annual T-Shirt Design Contest, PDF unveiled our five finalist designs. All were created by people living with Parkinson's or loved ones. The winning design will be featured on a t-shirt worn by thousands during April, Parkinson's Awareness Month.

What Next?
If these stories resonate with you:

• Vote in the Parkinson's Awareness Month T-Shirt Design Contest here.
• Browse the gallery to get inspired by the creative works of others.
• Get creative. Talk to an occupational therapist about creativity or consider taking an art class.
• Submit your works­, paintings, illustrations, pottery, and more,­ to the Creativity and PD gallery.
• Order a free copy of the 2013 Creativity & PD calendar by emailing info@pdf.org or clicking here.

We hope you enjoyed these stories as much as we did. As Victoria Tane says, "Being an artist is part of the respite, the refuge and the reason that I am able to deal with Parkinson's disease in a pretty positive way."

We think that sums it up pretty well.