By Don C. Reed
I wish you could have been there, August 15th, 2018, at the state Capitol building, Sacramento, California. It was a Biomed Committee hearing for the California Institute for Regenerative Medicine (CIRM), formed by the citizens’ initiative, Proposition 71, the Stem Cells for Research and Cures Act.
The parking lots close to the Capitol were full, but at last I found an outdoor lot, negotiated my ten dollar bill into the right machine, put the receipt on my dashboard so I would not be towed, and took off walking.
As always, it was a joy to see the white-domed Capitol building, symbol of our state’s democracy.
On the green lawn outside were hundreds of people, full of energy, excited to be here whatever their reasons: to fight an injustice, bring peaceful improvement, or maybe preserve something wonderful — like CIRM, California’s Stem Cell Agency.
Inside, glass-walled display cases showed off the history and products of our state; in front of the Governor’s office was a giant statue of the California state animal, the grizzly bear, gift of former Governor Arnold Schwarzenegger. And above? Ceilings so high you could fly a modest airplane, or dream of a better world.
A short ride on an oak-paneled elevator brought me to the 4th floor, and a hallway between two buildings, the old and the new portions of the Capitol.
Room 444 was where the hearing would take place, but the door was locked. The waiting area was like a painting: a wooden lattice framed blue sky, while soft-pile carpet absorbed our footsteps.
I was two hours early, partly because I can’t stand being late, but mainly because I would be allowed to make a public comment, five minutes to talk about CIRM. What an opportunity! I have no official connection with the California stem cell program; but it is a citizen’s initiative, brought into being by the people of California.
But now CIRM’s funding was running low; it was vital that it be renewed, to continue its great work.
Today was a time to remind Sacramento legislators what CIRM has done with the trust, and the money, that California placed in it.
I sat down on a deep-cushioned chair, intending to read my notes…but the chair was sooooo comfortable… .
My eyes opened when CIRM folk invaded the premises: leadership people, whom I would point out to you, if you were new at a public meeting, and sat next to me.
Here was Senator Art Torres (Ret.) with that spectacular mane of white hair. Vice Chair of the board of directors, Art could not relax for long, because every few seconds another Senator or Representative would approach, notice Art, and stop to shake his hand. I remember once he and I walked into a committee meeting, and the chair stopped the meeting just to come over, saying his father had once worked with Senator Art.
CIRM President and CEO Maria Millan joined us: a cheerful powerhouse, beaming energy. You knew immediately she was the President, very strong, someone you would want beside you when it was time to fight the dragons, but still approachable.
Maria Bonneville bounded into the area. Carrying herself like a runner, she needs lots of energy as V.P. of Administration: I think of her most as the link to patient advocates.
Chila Silva-Martin was there; I asked was she going to speak, and she said, no, not unless someone had a question about numbers — Ms. Silva-Martin has the aching weight of responsibility, to understand and explain CIRM’s financial plan, where every nickel goes. I would not want her job, but I am glad she is doing it.
Scott Tocher rushed by, nod and a wave and on his way. As general counsel, he was there for legal stuff; to know every policy that makes the program work, and make sure they were being complied with.
If they gave an award for Most Cheerful CIRM employee, that would be a shoo-in: Kevin McCormack, communications director. As usual he was there chatting with folks; Kevin begins by assuming you are a friend, and isn’t it great we have this wonderful program — let’s work together, it will be fun!
Conspicuous by his absence was Bob Klein, who technically does not work for CIRM anymore, but is the heart and soul of it nonetheless. The man who began Prop 71was hosting a birthday party (his own!) on a boat in San Francisco Bay.
“They’re opening the doors!”, someone said.
I sat down at the front table, next to President Millan and Senator Torres.
This was the busiest time of year for legislators, and many committee members would be “on the floor” in the main voting chambers, making sure the bills they supported or opposed were dealt with.
Chairman Kevin Mullin (D-South San Francisco) opened the meeting. He has a deep commitment to biomed, especially as his district has been called “the largest biotechnology cluster in the world” by the California Life Sciences Association.
Assemblymember Bill Quirk ( 20th district) was a veteran of many legislative battles in support of biomed; he asked numerous questions, said he was “satisfied” with CIRM’s delivery;
Assemblymember Marie Waldron of the 75th District, Minority Floor Leader, was very positive; I found out later she had been honored as “Legislator of the Year” by the California Chronic Care Association — https://ad75.asmrc.org/#biography
Assemblymember Todd Gloria was supportive, but new to me; I found out later he had been elected in 2016. His bio held something I liked: “a lesson his parents — a hotel maid and a gardener — taught him at a young age: if you truly care about something, then you should leave it better than you found it.” — words to live by.
CIRM President Maria Millan had the task of giving an overview of CIRM. This was clearly impossible, but she did it anyway. Here is a typical paragraph:
“CIRM has funded over 800 projects at over 70 institutions and is the largest single funder of clinical research for stem cell regenerative medicine. In 2016, we launched a bold 5-year strategic plan to cut the time in half for the development of a regenerative medicine therapeutic and to markedly increase the number of clinical trials. To date, CIRM has funded the treatment of over 900 patients in these clinical trials for a broad range of indications including fatal pediatric orphan disease, stroke, ALS, spinal cord injury, heart disease, chemotherapy resistant advanced cancer, diabetes, blinding eye disease, and sickle cell disease.”
She said A LOT in a relatively short period of time. To hear her full speech, go to:
Senator Art Torres gave brief remarks, centering on two of his “favorite CIRM programs”, SPARK, the Summer Program to Advance Regenerative medicine Knowledge, and the Bridges to Stem Cell Research program, both providing funds for deserving but low-income students, building their involvement in a stem cell career.
Jan Nolta of the UC Davis Institute for Regenerative Cures, gave a crisp presentation, citing the success of her institute as “all because of CIRM”, for funding the scientists. She had a funny word for the terrible disaster it would be to not have CIRM funding renewed, calling it “CIRMageddon” instead of Armageddon; she also provided a crucial statistic about the National Institutes of Health (NIH), where “only 5–8% of proposed grants get funded”.
David Jensen, editor of the massive weblog, California Stem Cell Report, gave a strong presentation. The “king of the critics” of CIRM, he may be counted on to point out his disagreements with the program — but he is a reporter, and will present positives as well as negatives. (His report began with a statement about Mazatlan, where he once lived on a boat, so I used that picture.)
For example: “The agency operates with financial and oversight autonomy that is rare in California’s government, courtesy of the ballot initiative that created it. But that measure also proved to be both a blessing and a curse. The agency’s financial autonomy has allowed it to provide a reasonably steady stream of cash over a number of years, something that is necessary to sustain the long-term research that it is critical for development of widely available treatments. At the same time, the ballot measure carried the agency’s death warrant — no more money after the $3 billion is gone. Cash for new awards is now expected to run out at the end of next year…”
A transcript of his pro-and-con remarks (well worth reading) is at:
Senator Torres introduced a family which benefited from CIRM’s investment:
“Mr. Pawash Kashyap and Upsana Takur are the loving parents of (baby) Ronnie Kashyap who suffered from X-linked SCID (Severe Combined Immune Disorder),a life-threatening immune disorder that left him unable to fight infections. UCSF found a way to cure Ronnie… now, because of CIRM-funded research, he is a beautiful little boy with no threat of life-threatening infections…”
My favorite moment: when President Millan and Senator Torres added up the amount spent, ($2.78 billion) and compared it to the money brought in by add-on grants and other sources, ($2.7 billion dollars), (https://www.cirm.ca.gov/our-progress/funded-institutions), showing we are getting more bang for the buck.
As a patient advocate, I have a lot to say, and it was difficult to reduce it to just five minutes — but I managed to restrain myself somehow, and the speech is below.
My name is Don Reed. I am the father of a paralyzed young man, Roman Reed, and the author of two books on the California stem cell program.
If you have a chronic disease, or provide care for someone who does, you know what it is like to have been told — the condition is incurable; there is no hope.
When Bob Klein inspired and led the citizens’ initiative, Proposition 71 in 2004, we did have hope, like never before: that stem cell research might alleviate, or cure many chronic ills afflicting our loved ones.
Today, thanks to the 7.2 million voters who authorized the California Institute for Regenerative Medicine, or CIRM, we have something better than hope; we have results, accomplishments, people made well — and a systematic way to fight chronic disease.
How does it work? Scientists apply for grants, a board of experts from outside the state evaluates the proposals, in-house scientists give their opinions, and the Independent Citizens Oversight Committee — with the help of the public — makes the final decision.
Curing disease is not fast, nothing guaranteed; there will be setbacks. But the CIRM way is like a farmer planting seeds. Results do not come overnight. But if the preparations are done right, cures — like crops — become almost inevitable.
It is happening now. Therapies are advancing; patients are benefiting; knowledge is being shared. Over 2,700 medical discoveries have been peer-reviewed and published in scientific journals — pieces of the puzzle of cure.
Children’s lives have been saved: thirty beautiful little munchkins who can now run around outside, happy in the sunshine, cured, actually cured, of the Bubble Baby Disease. Before, they had no immune system — now they do.
A young man, Kris Boesen, formerly completely paralyzed, is now lifting weights. He received a stem cell therapy originally developed by the Roman Reed Spinal Cord Injury Research Act, and advanced by CIRM. Kris Boesen recovered the use of his arms and hands. Think what that means to a paralyzed person.
Brenden Whittaker had granulomatous disease, a vicious immune disorder that prevents him fighting off fungal or bacterial infections. Over the years multiple infections had eaten away at his lungs and liver. His early years involved literally hundreds of trips to the hospital; his chances of surviving to adulthood were slim. He had a looming death sentence. But today, thanks to therapies developed with the help of CIRM, Brenden Whittaker lives. Wanting to pay back CIRM for his life — he decided to become a doctor, now that he will have enough years for that career.
CIRM is part of my favorite medical research story; in Toronto, Canada, three scientists entered a big room full of young people in beds, with their families around them. The children were in comas, unresponsive: dying. But the scientists had a new substance to try, made from the pancreases of dogs. With the parents’ permission, they started at one end of the room, injecting the comatose patients. When they reached the far end, the children who got the shots first — were sitting up and talking to their astonished parents. It was insulin, and it saved their lives. But even so — all those shots — this was a temporary fix, not a permanent solution.
In 1977, California developed artificial insulin — and today, CIRM is building on that legacy — to develop something like an artificial pancreas, to be permanently implanted in the body, where it will convert stem cells into insulin.
As for Roman, my son, cure has not come yet. He remains paralyzed with a chronic injury, and I am his care-giver. At 73, my health is good. But what will happen to him, when I die? I ache for him to be well, to do all the things able-bodied folk take for granted. No one should suffer what he goes through every day — and California has three million citizens with a disability. (https://tinyurl.com/yawlejay)
Maybe, in years to come, Washington will become more responsive to the medical needs of all our people, including the 50% of our population living with at least one chronic disease, like heart disease, cancer, stroke or diabetes. But hope is not enough. We cannot sit idly by and just wait. https://www.cdc.gov/chronicdisease/
We need something proven, practical, and here right now: CIRM, the glory of a state, the pride of our nation, a friend to all the world.
Please do everything in your power — to support, protect, and renew — the California Institute for Regenerative Medicine. Thank you.
P.S. If you want to see the hearing for yourself, here is a link, provided by Jason Stewart of Americans for Cures Foundation!