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 Fond Farewell to an Extraordinary Friend, Paula Wittekind

Paula Wittekind

In the loss of Paula Wittekind, who passed away on November 8, the Parkinson’s community bids farewell to a lovely friend, a fine mind, and a courageous and indefatigable presence. To the end, she fought quietly but effectively against her own infirmities and against the indifference of institutions that she felt could always do more to wage serious war against Parkinson’s. But in all of these ventures – whether it was the legendary Parkinson’s Pipeline Group, which she co-founded, the Parkinson’s Action Network, or my own organization, the Parkinson’s Disease Foundation – Paula served as an effective research advocate, always finding a way to deflect attention from herself and her own needs, to others and the work they were doing to advance the interests of her community.

I last spoke to Paula by telephone a few weeks before she died, finding a rare downtime moment between the visits of pilgrims from various parts of her life who were visiting her home in Cocoa, FL – people like Perry Cohen, Peggy Willocks and other heroes of our community. In a just few minutes, she swept away the sadness and trepidation that I brought to the call and replaced them with feelings of love, respect, a laugh or two, and above all inspiration about how I could be working in her wake a little bit harder, a little bit better … and a lot more meaningfully. What a gift she made to me personally during this single conversation, and how much I value it.

Thank you, Paula, from all of us. May your wonderful and far-flung family treasure their memories of you. And may they know how many lives you touched, how deeply … and with what profound effect.

The Recent Court Decision Halting Federal Funding for Research Involving Human Embryonic Stem Cells

You will all have read about last Monday’s surprise decision by a federal judge to halt federal funding for human embryonic stem cell (hESC) research. The ruling, which was in response to a lawsuit by scientists who were engaged in non-hESC research, was based upon the judge’s interpretation of a Congressional ban on using federal funds for the destruction of embryos that is sharply at odds with more than a decade of legal interpretations under three administrations, Republican as well as Democratic.

Although the decision on hESC research does not extend to other kinds of stem cell research – including the new and powerful technique known as “induced pluripotent stem cells (IPS)” – it does represent a sharp and unexpected setback just a year and a half after President Obama signed an executive order releasing funds for hESC research.

The judge’s action won’t block the road to a cure for Parkinson’s and other diseases, but it closes – at least temporarily – one of the gates to that road. And scientists tell us they need all of those gates open, not just some, if they are to do their life-saving work most effectively.

With PDF's support, the Parkinson's Action Network (PAN) is working on this issue. According to PAN's CEO, Amy Comstock Rick, there is some good news.

First, the Obama Administration has moved with alacrity to challenge the judge’s ruling, which is known as a “temporary injunction.”

Second, stem cell research advocates, led by the Coalition for the Advancement of Stem Cell Research (CAMR), is working with members of Congress to craft a legislative “fix” so that the next judge doesn’t have the same hook on which to hang his anti-hESC research hat that this one did.

And third, we have an advocacy coalition – including you and other people with Parkinson’s and their families – that is stronger than it has ever been and has proved its effectiveness politically on this grassroots issue. As Amy says in a statement she issued to the PD community on Wednesday, “we need each and every one of you to be a part of it!”

Certainly there’s no denying that the court decision is a bad break for the Parkinson’s community. If it is allowed to stand, it will throw a wrench into science, and other wrench into the hopes and prayers of people with Parkinson’s and their families who have a right to be sure that scientists have access to every opportunity to chase the cure to their disease. Be assured that PDF will be doing everything it can, along with our friends at PAN and the other Parkinson’s organizations, to make certain that it does not stand.

We will keep you apprised as events unfold. In the meantime, you may want to visit the PAN website for further information on how you can become involved in advocacy efforts around this issue.

What Do You Think?

So what are your thoughts on this recent court decision halting federal funding for embryonic stem cell research?