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.

The California Institute for Regenerative Medicine (CIRM) has asked the Institute of Medicine (IOM) to provide an independent assessment of CIRM’s programs, operations, and performance. The IOM Committee on a Review of the California Institute for Regenerative Medicine will assess the organization’s initial processes, its programmatic and scientific scope, organizational and management systems, funding model, and intellectual property policies.

Public Meetings

The IOM committee will host a public meeting on Tuesday, January 24, 2012. The public meeting will be held at the South San Francisco Conference Center, 255 South Airport Boulevard, South San Francisco, CA. The meeting is scheduled to take place from 9:00 a.m. to 5:00 p.m. and is intended to provide an opportunity for the committee to gather information regarding aspects of the study charge.

The agenda can be found on the Institute of Medicine website. The committee invites individuals who wish to attend the meeting and/or comment on any topic related to the study charge to register for this event. Individuals who are interested in providing commentary/testimony will have 5 minutes to do so during a public comment session at the end of the day. If you have questions about this meeting, please contact Thelma Cox (202-334-1755 or The committee will also host a public meeting in Irvine, CA on April 10, 2012. The agenda for this meeting has not been determined; however, there will be a public comment session as part of the meeting.

Other Ways to Provide Input

In addition to public meetings, members of the public will be invited to share their thoughts, perspectives, and/or concerns about CIRM through surveys on the IOM website. A survey for stakeholders will be posted in the coming weeks. Surveys for CIRM investigators, leadership at universities that receive CIRM funding, and CIRM industry partners have recently been posted.

Jing Xi

Jing Xi, M.B.B.S., M.P.H.
Research Associate
Board on Health Sciences Policy
Institute of Medicine
500 Fifth Street, NW, Keck W-732
Washington, DC 20001
Tel: (202) 334-2148
Fax: (202) 334-1329

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.

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