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.

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