The Diane Rehm Show submission: Mo Udall and Parkinsons advocacy

Ms. Rehm is headlining an awards dinner at the National Press Club on Wednesday, September 14, 2011, which will also include Wolf Blitzer and Elanor Clift.    http://www.parkinsonsaction.org/.   I'm writing to ask that she please raise the bar and challenge the host organization to broaden its agenda beyond just research to include social/living issues, including especially threats to the safety net of Social Security and Medicare which continue to surface in discussions on eliminating entitlement programs. As background, here is a link to my blog post WOULD MO UDALL ATTEND PAN’s 2011 MORRIS K. UDALL AWARDS DINNER? (Not Without Reservations).  http://marksrubin.blogspot.com/2011/09/would-mo-udall-attend-pans-2011-morris.html.   Mo Udall turned in a phrase what took me more than a decade of living with Parkinsons and taking a national leadership role in providing pro bono resources for people with PD to distill:  “No place could call itself a city -- a center of civilization -- if it did not provide for the education of its young people and the care of its sick and elderly.”   I hope that Ms. Rehm carries the spirit of that message to the awards dinner next week, so that "care" becomes part of the Parkinsons community's advocacy agenda, not just "cure."

WOULD MO UDALL ATTEND PAN's 2011 MORRIS K. UDALL AWARDS DINNER?

WOULD MO UDALL ATTEND
 PAN's 2011 MORRIS K. UDALL AWARDS DINNER? 

(Not Without Reservations)

“No place could call itself a city -- a center of civilization -- if it did not provide for the education of its young people and the care of its sick and elderly.” Morris K. Udall

(“Politics and Morality: Where Leaders Fail,” New York, May 26, 1971)

The Mo Udall of my youth, long before Parkinsons was a blip on my family radar (and perhaps his), was an icon of compassionate American leadership. He was a big picture thinker, with the energy and skill necessary to bring both broad and targeted measures to the table and shepherd them successfully into law. He was a man on a mission, particularly when it came to legislation directly affecting the lives of people, especially of those in need, in the here and now.

One of Mo’s early and most significant triumphs culminated in the passage of what became Medicare, the medical care social safety net for not only the elderly, but also people with disabilities. He began helping develop and support Medicare legislation in the early 1960s, in his 1st of 14 terms terms in Congress.  (CONGRESSMAN'S REPORT, "Medicare"--The Battle of Madison Square Garden, June 1, 1962.)

Medicare was, of course, enacted as a component piece of the broader safety net, including the Social Security program. For Mo and many of his cohort group, sustaining and contributing to this safety net was not only among their proudest accomplishments, it was a measure of who we are as a country. He believed that “Federal welfare programs...[like] Social Security, the income tax, Medicare and (a century ago) free public education...have made America stronger and enriched even those who have been taxed the most. Like Portia's ‘quality of mercy’ they have enriched both ‘he who giveth and him who receiveth...’” ("Myths and Politics," North Carolina, April 20, 1966.) In his 1976 Presidential run, Mo’s position on Health Care was unmistakeable: "Why in America, with our immense wealth, should the poor get sicker and the sick get poorer? ...America is the only industrialized nation in the world which does not provide basic health service as a universal right. As President, I will make sure that we do." ( Mo Udall for President 1976 Campaign Brochure)

Here we are, a half century later. A moment when perhaps the hottest political issues in the country – health care reform, entitlement programs, dismantling of Social Security and Medicare, etc. – threaten to undo some of Mo Udall’s most valued programs and gut the potential to realize some of his cherished dreams. Would Mo come to an awards dinner in his name hosted by an organization that has essentially ignored those issues and by choice chosen to not engage in this debate? Not without reservations!

If Mo decided to attend this year’s attend the Parkinsons Action Network's 2011 Morris K. Udall Awards Dinner, my guess is he would take the opportunity to issue a strong challenge to the Parkinsons lobby to reevaluate its historical priorities and place advocacy to secure research dollars in proper context rather than dominate its agenda. Everybody wants to find a cure for Parkinsons (except perhaps for some with financial stakes in treatment) and no doubt Mo would still be proud of the Parkinson's Disease Research Act of 1997 that bears his name. Of course, as Mo is famous for saying, “If you can find something everyone agrees on, it's wrong.”

For research dollars to be the sole goal of the Parkinsons’ lobby, or even the primary goal at this moment in time, is ludicrous. And in my view, an affront to Mo’s legacy. If Mo was with us today, does anyone think he would be silent on the prospect of the elimination of Medicare and Social Security?  How might he reshape PAN's framing about The Federal Debt Ceiling Debate and Its Impact on Health Policy: We Need Your Voices -- which abstracts from all of those social issues so critical to our community??

Please ask PAN to take a stand on these major social issues that affect so many in the Parkinsons community. Mo might proudly note at his Awards Dinner that his Democratic has “been the party of the disadvantaged in our society,” as he did in his Keynote Address at the 1980 National Democratic Convention. But in the same breath, he would also comfort everyone with what PAN hopefully already knows: this need not be partisan. Many major health based organizations have offered, at the very least, core principles that need to be honored in any reform of America’s safety net.

PAN needs to get its head out of the Sinemet sand. Indeed, by sending the Parkinsons community to their representatives armed only with a pitch for research money, and no position on the major social issues confronting our community and country, PAN risks its credibility. PAN can and should do better, especially if it wants to truly be the “unified voice of the Parkinson’s community.”

For a more detailed account of the history, limitations and risks of PAN’s research-only (or at least research=dominated) agenda, see http://marksrubin.blogspot.com/2011/01/rethinking-parkinsons-advocacy.html

Please honor Mo Udall by pressing those doing Parkinsons advocacy to broaden their agenda. After all, Mo’s highest and broadest call in this arena was for “the care of the sick” not just “the cure.”

Mark Rubin
9/1/2001

⁵ Mark Rubin, J.D., developed the legal content on the National Parkinson Foundation’s website, after years of helping his mother and later himself and many others navigate legal issues confronted by people with Parkinson’s and their caregivers.  The chair of NPF’s 5th Annual Young Onset Parkinson’s Network Conference, and a health care law attorney for most of his 25 years of law firm and then in-house legal practice, Mark has spoken frequently across the country on numerous health care law issues, including at programs focusing on Parkinson’s disease.  After being diagnosed with Parkinson’s near the end of the Millennium, Mark continued his practice as Associate General Counsel, American Dental Association for about a decade longer, before retiring on disability at age 50, or what his nephew would call two cards short of a full deck.