STEM CELL BATTLES

Hi, Folks!

 

Dr. Claire Pommeroy, leader of the UC Davis stem cell program, and a member of the Independent Citizens Oversight Committee, put together a conference on making the benefits of stem cell research available to all.

 

She invited me to speak on a panel with Dr. Alan Trounson, President of the CIRM, Assemblyman David Jones, and herself.

 

Here is roughly what I will be saying.

 

1. First, thank you, Dr. Pommeroy, for arranging this conference, encouraging us to think of a vital issue in a new way: to bring the benefits of stem cells to all.

 

2. Wednesday, I testified against a proposed new law, Senate Bill 1565, which would consider a restructuring of the entire California stem cell program. Among its goals would be to require corporations receiving money from the California stem cell program to develop what I call forced affordability, requiring all to take CIRM research grants to come up with plans for insuring access to those without medical insurance. Well-meaning in its intent, its impact could be a disaster, and delay the development of stem cell therapies for cure. Let me tell you why.

 

3. On September 10^th, 1994, my son Roman Reed suffered a spinal cord injury. He was playing college football, an accident occurred, his neck was broken, he became paralyzed from the shoulders down —and we his parents knew we would do anything to make him well again.

 

4.  Across the world, parents are the same; there is no place where life is cheap and people do not care; we will all do whatever it takes to protect our families.

 

5. So should the products of stem cell research be made available to all, including those with limited financial means? I would respectfully suggest the question is too small, and that by so limiting it, we risk failure. The overriding issue must be, should decent medical care be available to all?

 

6. Until we say that universal health care is a must, we can never make even routine medicine available, let alone the operations and products involving embryonic stem cell research, which will at first be expensive, almost unaffordable.

 

7. Example: just for routine medical expenses, a paralyzed person like my son faces lifetime medical costs of three to five million dollars: who will pay? Does anybody in this room have a couple extra million dollars to donate?

 

8. Now add those medical costs to all the other incurable conditions—remember that three/fourths of all medical costs come from people exactly like my son—people with incurable illness or injury.  How much of a medical bill do we face?

 

9. Two trillion dollars. That is the cost of all medical care in America. It is also the total federal tax receipts for our country. It would take every federal tax dollar we have to pay our nation’s medical bills.  No health care plan can ever meet the needs of everyone—without cure research.

 

10. As patient advocates—as parents and family members—the only way we can make cheap cures available to all, is to make sure those cures are developed.

 

11.  Example: Geron Corporation is trying to set up human trials for a spinal cord injury procedure—one I happen to know well, because the research to develop that technique was paid for by a California law named after my son, the Roman Reed Spinal Cord Injury Research Act. This procedure, to reinsulate the damaged nerves of a newly-paralyzed patient, will hopefully go to human trials this year. The cost of the original research Roman’s law paid for? About 150,000 bucks.

 

12. The cost of the human trials, which Geron has to pay? Approximately three hundred million dollars, roughly the entire net worth of their company. They are essentially gambling everything they have—and maybe, because of their risk, a person carried into a hospital—paralyzed—will have a chance to walk out.

 

13. We want to encourage such investment, not discourage it.

 

14. Would it be wise to force Geron to also pay the medical costs of those paralyzed people who could not afford the operation?  Would that not be the worst possible thing we could do? Why should a corporation even consider the hugely expensive clinical trials, if they could not see a profit on the other side?

 

15. Every great change is expensive at first. Consider the computer: developed by government tax dollars, as part of the race to walk on the moon. Computers at first were big as houses, and cost many millions. Today computers are affordable: within the reach of most Americans. But it took time to make them affordable. Would America’s computer industry have been born, if we had insisted that Silicon Valley provide computers cheaply to those who could not afford them?

 

16. Diabetes treatments once cost thousands, today ten cents a dose. Should we have denied the research funding, because the treatment was expensive at first?

 

17. Practical tips? We need to encourage internationalism: to swap scientists, and share knowledge, so that the power of every country comes together.

 

18. The single best thing any advocate could do right now is to try and increase the federal funding budget. For the past five years, NIH funding has been flat-lined at $29 billion. In a hospital, when a patient’s monitoring machines flat-line, that means emergency, someone is dying. The NIH funding, once the jewel of the world, is now flat-lining, and we need to do something about it. $29 billion is ludicrously inadequate for the two trillion dollar medical bill in America alone.

19. And the CIRM? This is a shining example of government at its best. This is no tool of special interests-- it was not developed by lobbyists—we took not one dime from biotech—it was built by parents, people like Bob Klein, father of a diabetic son. California parents fought for it; we voted for it; great people are leading it now. We need to cherish the California Institute for Regenerative Medicine, protect it, encourage it—and let it do the work we elected it to do.

 

Don Reed