CIRM SENDS PATIENT ADVOCATES TO INTERNATIONAL SOCIETY OF STEMCELL RESEARCHERS CONFERENCE!
By Don C. Reed
A few hours from now, I will sit in an astonishingly narrow airplane seat, and shove my briefcase full of reading materials under the seat in front of me. The jet will taxi around, and then—and then—the thrust of acceleration, the thrilling roar of leaving earth, bending the laws of gravity.
A few hours of travel and a passport check, and Canada will open its doors to another happy visitor.
In Toronto the stem cell conference awaits—three days with the world’s best stem cell scientists.
Once again, the California stem cell program is sending patient advocates to Canada for the International Society of Stem Cell Researchers meeting. This is both a wonderful gift to the advocates who volunteered and were lucky enough to be chosen—and highly appropriate.
Patient advocates like my son Roman Reed are the emotional muscle behind research for cure. It is not easy for a paralyzed person to travel, but he will be there, listening and learning, and speaking.
Because there will be funding fights ahead, both nationally, and in every state.
When a politician says, “We can’t afford to fund the research”—someone must be there to say: “We cannot afford NOT to fund the research—and here’s why.” That someone is us. If it is just the scientists talking, it is all too easy for politicians to ignore them.
Think of he numbers. There are only a handful of top research scientists. Politically, they are negligible. If they only talk to each other, they might as well pack up their test tubes and go home, because they will never get public funding.
But there are millions of patients and family– patient advocates. Working together, we cannot be ignored.
At my first scientific convention (a spinal cord injury conference at Asilomar, California), I asked so many questions they took away my microphone privileges! The man in charge said the meeting was for scientists only, so they could learn from each other.
Fortunately, that archaic attitude is no more. Scientists may learn best when they can shift into the experts-only mindset, just like auto mechanics or any other specialist—but for them and us to succeed, we must work together. Researchers want funding; we want them to have it. So we have to understand, at least a little, what they are trying to do.
The California Institute of Regenerative Medicine (CIRM, the California stem cell program) sprang from the citizen initiative Prop 71. Last year, the CIRM funded more stem cell research last year than any other organization on earth. And who made that funding possible? Patient advocates, led by Bob Klein, patient advocate extraordinaire.
Personally, I am a dues-paying member of the ISSCR, chipping in at the non-scientist level, $70 a year. (My wife Gloria does not know about this little expenditure, so please do not enlighten her. Fortunately for me, she does not read all of my stem cell scribblings.)
For three days I will sit through lectures till my eyes glaze over, and then I will sit some more, taking notes to try and stay awake while giant-brained researchers explain in big words things I can never fully grasp, but must understand—at least well enough to fight for funding.
I will be sitting near the microphone, having learned long ago that if you want to ask questions, you need to be early in the line. Being at an age when everything reminds you of something else, I invariably have a comment or a question, and if they do not unplug the mike I will be up there.
The ISSCR conference will be an adventure of the mind, as well as a chance to meet the champions. We will make new friends and find ways to work together, on the universal problem of chronic disease.
Because it is not just America with one-third our population suffering incurable illness and/or disability.
Every country on earth faces such challenges, and no medical system can pay such extraordinary costs.
You have heard the statistics: how chronic disease cost America $1.65 trillion in 2009 (the most recent year I have statistics for) as much as the year’s installment of the national debt ($1.60 trillion). We spent more on caring for folks with an incurable disease than all federal income taxes ($1.2 trillion) combined.
We need an international effort to solve the epidemic of chronic disease.
The ISSCR conference brings the scientists together—and once again, thanks to the foresight of the CIRM, the patient advocates will be there too.
P.S. Are you going to be in SAN DIEGO on Wednesday the 22nd for the next big meeting of the California stem cell program? The governing board of the program will be choosing the next Chairman. Bob Klein, the man who began Prop 71, is retiring from the active leadership—who would you want to take his place?
Two outstanding candidates—Frank Litvak and Jonathan Thomas– have been nominated by the Governor of California, the Lieutenant Governor, the Treasurer and the Controller.
If you want to hear the candidates speak, and offer your opinion as to which one is more qualified, please join us on Wednesday, June 22nd. Go to www.cirm.ca.gov, and click on “MEETINGS” for details.