Shoulders to the Wheel

Prior to the invention of the automobile, people moved from place to place in carts, carriages & wagons.  If the  vehicle became stuck in the mud, it was common for the passengers to get out and work collectively to push it out, literally putting their “shoulders to the wheel”.

The image is a very apt metaphor for the challenges we face in the cure movement.  I believe we are now “unstuck” from the notion that axons cannot regenerate and there is no hope for curing paralysis. We still have a lot of “pushing” to do, however, to get our wagon all the way up the hill.

Putting your shoulder to the wheel means to put full effort into the task until it is completed, to work persistently and wholeheartedly. That’s what it will take to reach our goal, and the more shoulders we have, the faster we’ll get there.

Over the last few months, we’ve seen a couple living examples in the SCI community of advocates demonstrating this kind of effort. Out in California, Don and Roman Reed have been unwavering in their determination to renew funding for the Roman Reed Spinal Cord Injury Research Act. This little bill has provided millions of dollars of support for the the Reeve-Irvine Research Center, but was a victim of budgetary cuts during the recession.

Undeterred, Don & Roman set forth to create an alternate funding source through an add-on to traffic tickets.  After several months of lobbying and negotiating, and aided by community e-mail campaigns, they are close to achieving their goal. You can learn how they did it and help them get to the finish line by following Don Reed’s blog here.

Another one of our powerful shoulders belongs to Dennis Tesolat. Talk about persistent! Several months ago, Dennis and a few of his friends asked The Rick Hansen Foundation a very simple question, “How much are you spending on a cure?”  I wrote about his efforts to solicit a satisfactory answer in last month’s blog entry, and regret to report that RHF did NOT offer any kind of response at the recent Interdependence conference.

That won’t discourage Dennis. Rather it will empower him to seek more community support, to reach out to the media and other organizations affiliated with RHF, and to continue his dogged persistence until we have an answer as to how the Foundation is working to achieve “a world without paralysis after spinal cord injury” (the RHF mission).

Don, Roman and Dennis don’t get a lot of media coverage for their work. They’re not flashy or self-promoting.  They don’t whine about life with SCI, or complain about the frustrations inherent in the glacial pace of our political and regulatory systems. They just put in the work from day to day, putting their shoulders to the wheel, staying true to the course, and keeping their eyes on the prize.

Skin in the Game

One of my favorite fellow advocates, who is quadriplegic, often uses the term “skin in the game” to describe his commitment to achieving cures for spinal cord injury. No less a renowned figure than Warren Buffet coined the phrase, referring to a situation in which high-ranking insiders use their own money to buy stock in the company they are running.  The idea behind creating this situation is to ensure that corporations are managed by like-minded individuals who share a stake in the company (Investopedia).

When it comes to making policy and delegating research funds, the individuals who have the most “skin in the game”  are those directly impacted by a disease or condition.  Unfortunately, too often they are not part of the conversations that lead to decision-making.  At U2FP this issue is rising up our priority list as we watch the regulatory environment strangle medical innovation.

History does provide us with at least one outstanding example where patient advocacy led to expedited treatments – the AIDS community’s response to the 1980s epidemic and their subsequent scientific and political involvement.  Currently, the California Institute of Regenerative Medicine (CIRM) has a governing board with representation from science, industry and patients.  One of the board’s members, Duane Roth, has written a convincing argument for the participation of patient advocates in his essay, “A Third Seat at the Table”.

One of our outstanding SCI community advocates and bloggers, Don Reed, also sits on the CIRM oversight board.  In case you haven’t heard, CIRM recently awarded $25 million to Geron Corporation to support clinical development of GRNOPC1, the cell therapy being used in Geron’s Phase I clinical trial for spinal cord injury.  For a fascinating report on the behind-the-scenes negotiations that led to the decision, read Don’s blog entry, “California Versus the Valley of Death”.  The story is a testament to the power of patient advocacy.

Persistence

just might be the most important quality to cultivate in order to be an effective advocate.  With persistence you keep taking action even when you don’t feel motivated.  Eventually you get results, and with results comes motivation.

Two of the more persistent and effective advocates I know in the spinal cord injury community are Don Reed and Karen Miner.  They have been raising money and influencing legislation in the state of California for over 10 years.  Together they helped engineer the passage of the Roman Reed Spinal Cord Injury Research Act back in 1999.  Among other achievements, this little piece of legislation generated funding for the scientific research that eventually became Geron’s historic clinical trial.

Unfortunately funding for the Roman Reed Act became a victim of California’s state budget cuts.  Here’s where the persistence comes in.  Undeterred, supporters introduced a bill that would provide non-tax funding in the form of a $3 add-on fine to reckless drivers.

The bill, AB 190, goes before the Public Safety Committee at 9:30 am tomorrow (April 26).  It’s not too late for you to add your voice to the chorus supporting this legislation that is so important to advancing research into curing spinal cord injury.

More background information, a sample letter, and email addresses for the appropriate legislative aides are available by following this link.  Take action, see results, get motivated, and reward your persistence.