ON THE DEFEAT OF SENATE BILL 1565
In the middle of the Wall Street chaos yesterday, as I sat watching CNN, wondering if I was witnessing the collapse of Western civilization, the telephone rang.
It was Amy Daly, co-executive director of Americans for Cures.
“I have news,” she said, “on SB 1565.”
Well, okay, I was sitting down anyway. More bad news would just fit with the rest of the day.
Senate Bill 1565: we patient advocates had been fighting that bill for the past eight months—through six committee hearings in the California Assembly and Senate– losing every step of the way.
SB 1565 (Kuehl, Runner) was another bill attacking California’s stem cell program: the fifth, if memory serves. Since Proposition 71 was voted into law, it has been under constant attack, from both lawsuit and legislation.
The bill’s primary author, Senator Sheilah Kuehl, is a smilingly terrifying opponent. Not only is she tough to go against because she is strong, experienced, and intelligent, but she is also a good person. It is tough going against someone you genuinely like.
Her main purpose in the bill was noble: to guarantee that any treatments developed through the stem cell research would be made available at low cost to the uninsured– but the CIRM (California Institute for Regenerative Medicine) already agreed with that. Even she acknowledged it, stating that the CIRM and she were “on the same page” with the access issue. She wanted it in state law, she said, not a statute which might be changed.
Unfortunately, the bill also had a poison-pill amendment, inserted by a well-known enemy of the research: Senator George Runner, described by one Los Angeles newspaper as a “virulently anti-embryonic stem cell research Republican”. The Runner Amendment would remove California’s preference for embryonic stem cell research, which was the reason we voted for Prop 71 in the first place.
That anti-embryonic provision made the bill a threat to the new science all across America. Can’t you just hear the opposition? “Even California rejects embryonic stem cell research”, they would say, “why should we change the Bush restrictions?”
I was braced for bad news. Politically, the safe thing for Governor Schwarzenegger was to sign the bill. He had nothing to gain by standing up for us, and much to lose. Consider: because of budget problems, he is facing a possible recall, and needs the support of every legislator. All he had to do was sign one bad bill, and this one did not even look like a bad bill, on the surface.
“The Governor vetoed it”, said the voice on the phone.
Wow. Just like that.
Arnold Schwarzenegger had come through for stem cell research once again.
By this act of political courage, the attempt to remove California’s priority for embryonic stem cell research had failed.
The fight will go on, of course.
The bill did achieve one of its goals; an “efficiency group”, the Little Hoover Commission will be studying the stem cell research governance board, the Independent Citizens Oversight Committee: to see if there are ways to eliminate conflict of interest, whether “real or perceived”.
But I am not worried about that. We will prevail. The Independent Citizens Oversight Committee is fantastic, and can withstand the closest scrutiny.
There will be public meetings; patient advocates will be there. If there is a citizen committee, patient advocates should try to be on it, instead of only those who oppose the program. I will be there, of course, and will report back to you, whatever happens. If the Little Hoover Commission develops a new law or initiative against us, I will let you know about it early, so we can protect California’s great gift to the world.
Because we are fighting for something shining. I had a glimpse of it, a few days ago.
I wish you could have been there, at UC Davis, September 25th, 2009.
We were in a tall, barn-like structure, formerly a fairgrounds hall, and just as it had been in those days, today it was full of happy people.
From this day forward, that building would be ennobled: it was now officially the UC Davis Institute for Regenerative Cures.
Dr. Claire Pommeroy, beaming with pride, welcomed us.
On the stage were: UC Chancellor Larry Vanderhoef; California State Senator Darrell Steinberg; the Honorable Doris Matsui, U.S. Congress; Judy Roberson, President of the Northern California Chapter of the Huntington’s Disease Society; Jan Nolta, Ph.D., director of the brand new institute; Bob Klein, whose leadership made the funding for the project possible in the first place— and two parents, fighting for their children’s lives.
It was a time of triumph, because many people had worked hard for years to bring together the money, knowledge, and will to make this happen.
It was also a reminder why our work must go forward.
Those parents, Keven and Teresa Partington, had two adorable little blonde blue-eyed two-year-old twins, full of energy, seemingly in boundless health.
But both children were ill with a progressive disease called cystinosis, which attacks the eyes and the kidneys, and may take life as well.
They are why we fight.
Judy Roberson spoke of losing four members of her family to Huntington’s disease, and of the continuing struggle to advance research for cure.
She is why we fight, inspired by her indomitable will, and example.
Bob Klein spoke, telling the story of a cab ride with Paul Berg, winner of the Nobel Prize for his work with recombinant DNA, which was attacked by the same arguments used against embryonic stem cell research, and was almost banned. Even when it was allowed to go forward, the prediction for failure was plain—nothing would come from it for fifty years, if ever.
That was 1977.
In 1978, just one year later, DNA research made artificial human insulin, which as Bob put it, “keeps my son alive today.”
The research is for people like my paralyzed son, Roman (he was quoted again and again throughout the day, whenever people would say the official motto of the CIRM “turning stem cells into cures”, which he wrote), and my sister Barbara, who suffers from cancer and leukemia. She had adult stem cells taken from our brother David (mine did not match) and that gained her about a year of remission. It was very definitely not a cure, and the cancer has returned– but it gained her time.
Those who think the California Institute for Regenerative Medicine only funds embryonic stem cell research should visit the UC Davis Institute, where the majority of research focuses on adult cells. The reason for this is simple: adult stem cell research has had several decades head start on embryonic, and is closer to the stage where it can help people.
Which is better, adult or embryonic stem cells? To my mind, the answer is both. Whichever works, is the one we should use, and the answer will vary from use to use.
UC Davis will be mounting a study to investigate which sort of stem cells work best for which purpose.
When one of the speakers, Senator Steinberg, had to leave, Claire Pommeroy gave him the most graceful exit, shoo’ing him out in the most cheerful way, with a compliment:
“Go back to the Capitol and do good for the people– like you always do.”
That was right and proper. Sacramento is the capitol of California’s hopes and dreams.
And at the very last, Dr. Pommeroy, member of the ICOC, said something I hope Senator Kuehl will hear:
“It is important to point out, that because stem cells have the potential for addressing some of society’s most daunting health challenges, UC Davis recognizes its responsibility for delivering any therapies it develops in a fair and equitable way. We are committed to helping ensure that the cures will be affordable to all Californians.”
Sheilah Kuehl’s bill did not pass. But the Senator raised a vital issue, that every family, even without insurance, deserves access to the best medical care modern science can provide. Language providing for the uninsured is now an official part of the California Institute for Regenerative Medicine.
Her efforts brought us closer to universal health care.
Thank you, California.