NOT TOO LATE TO JOIN US!
Tuesday, 24th is a public meeting about the Institute of Medicine’s study of the California stem cell program.
I will be there, and I hope you will too. Below the information is a copy of my remarks I will make during the five minute public comment period. Those remarks have absolutely no connection with the meeting, except as my opinions to be expressed.
DON’s REMARKS—TUESDAY, 24 January, 2012
My name is Don Reed. I am the chair of Californians for Cures, Vice President for Public Policy for Americans for Cures Foundation, and the father of a paralyzed son, RR whom you just heard.
The California stem cell program is the pride of a state, the glory of a nation, and a friend to all the world. It should be studied as a source of inspiration, something to be emulated
When my son was first paralyzed, in 1994, I asked a research scientist, what did he need? He said money—if I work six months on a grant request, and don’t get it, the science stops. I worked several years to pass a small California law, the Roman Reed Spinal Cord Injury Research Act of 1999, which provided $14 million in state funding for research for cure, and an additional $64 million in add-on grants from the federal government and other sources.
It was productive and valuable. But it depended on $1.5 million a year from the state government—and last year, its funding was removed. $1.5 million… that is less than the cost of providing lifetime medical care for just one paralyzed person—$3 to $5 million.
America today faces a mountain of medical debt. In 2009, chronic disease cost our nation the staggering sum of $1.65 trillion dollars; this equals the national debt for that same time, $1.6 trillion; and it far exceeds the $1.4 trillion brought in from all federal income taxes. 75% of all medical costs are chronic disease and disability, not fixing people, just maintaining them in their misery, and impoverishing our country in the process.
We already know cure research is cost-effective, incredibly so. It is estimated that, if the polio vaccine had not been discovered, America would now be paying roughly one hundred billion dollars a year to keep polio sufferers alive in iron lungs. Instead, that gigantic medical expense is gone, because America funded research, through the March of Dimes, a caring Congress, and President Franklin D. Roosevelt.
But that method of funding cannot help us now. If we look to Congress—not much hope for major increases in research there– because they have to pay for everything up front, and generally that means cutting something out for every new nickel they spend.
We need something different, and that is what the California stem cell program is all about—long term funding, so that the cost of cures will be borne by the people who people who benefit.
Long-term funding lets scientists know it is safe to involve themselves in regenerative medicine.
The California stem cell program began as an initiative, and I was proud to serve on that campaign’s board of directors. Since it began I have tried to attend all of the meetings held in at least the northern half of the state—more than a hundred. It has been an amazement to see how open and accessible the program is. I urge everyone in this room to join us at the meetings. As a member of the public, you may speak and be heard, and your words will carry weight.
It is doing an amazing job. The ICOC, or governing board, is a who’s who of the champions of research, Nobel Prize winners, Deans of colleges, leaders in the biomed and patient advocate communities. These are all people at the very top of their fields, accustomed to getting their own way—I worried they would not be able to get along! But they left their egos at the door, and work together for the good of all.
What would I do differently?
First, I would systematically brag a whole lot more. People need to know the amazements that are going on, and most do not. For instance, CIRM has a terrific weblog, done by Ms. Amy Adams—that should be sent to every disease advocacy group in America, reaching out to them just as we did in the campaign.
I would like to ask for grants for stem cell research as it may affect the problem of obesity. Gross overweight is not just a joke of America’s expanding waistband—obesity complicates every other disease and disability, and may cause some diseases as well. There is research connecting various types of genetic abnormalities with obesity, and stem cells may be a part of that fight.
I would ask for grants or loans for small startup biotechs, the Mom and Pops stores of biomedicine—studies show it is increasingly difficult for them to find startup capital. We should help them in some way, by grant or loan.
Finally, I would ask for a visual representation of the hope of stem cell research, to remind us of the quest for cure. We need something on Embracadero, that tourists can touch, and photograph their children beside. Maybe a statue of Christopher Reeve standing up from his wheelchair. The man millions called our Christopher sent my family a letter we will always treasure. It said, “One day, Roman and I will stand up from our wheelchairs and walk away from them forever.” Cure did not come in time for our great champion, but the flame of his faith still lights our way. We will, as he always said, “Go forward”—and we will prevail– because the California stem cell program has taken up the torch. Thank you.