WHEN I am asked why I spearheaded the campaign to advance research on human stem cells in California, I often think back to a conversation I had in July 2004 with Paul Berg, a Nobel laureate for his work on recombinant DNA. It was four months before California was due to vote on Proposition 71, which proposed creating a $3 billion public fund for stem cell research in the state over the next 10 years. The weight of the campaign was beginning to test my resilience, and I needed reassurance that I was on the right path. I wasn’t sure whether I would get it from Paul.
I put to him that stem cell research therapies had been compared to the discovery of antibiotics and recombinant DNA. “Are they really that important?” I asked, half expecting him to play down the comparison. But without missing a beat he agreed. “Research with embryonic stem cells for use in regenerative therapies will transform the future of medicine.”
I knew that I had to balance my enthusiasm for this new field with the understanding that results would take some time to emerge. But as the father of a 14-year-old boy with type 1 juvenile diabetes and the son of a woman with late-stage Alzheimer’s, I understand first-hand how chronic disease can have a tragic impact on a family. The discovery of embryonic stem cells opened a new world for understanding the dynamics of disease, and offered hope for better treatments and even cures for devastating conditions such as Parkinson’s, heart disease and cancer. Promoting this new frontier held long-term promise for my family and for millions of others. Our campaign, which included the largest coalition of patient advocacy and medical groups in US history, called on Californians to do what the federal government refused: give scientists sustained funding to study embryonic stem cells and how they might reduce the suffering and cost of chronic disease and injury.
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In November 2004, Californians answered that call unequivocally. Proposition 71 was passed by an overwhelming majority, creating the California Institute for Regenerative Medicine (CIRM) and earmarking $3 billion for research that could benefit an estimated 128 million people in the US alone. Yet despite this major victory, we knew our work had just begun.
Before issuing grants, the CIRM had to create an infrastructure for advancing the science in an ethical way. Our governing board, the Independent Citizens’ Oversight Committee (ICOC), includes some of the brightest minds in the country: a Nobel laureate, two former US Food and Drug Administration commissioners and the deans of California’s seven finest medical schools. This group of academics, scientists, physicians and patient advocates aims to ensure that the process for issuing grants and establishing ethical practices will adhere to the toughest standards. The National Academy of Sciences has made an invaluable contribution with their recently released world-class set of medical and ethical guidelines for stem cell research, which the ICOC has adopted as interim guidelines.
“Promoting this new frontier held long-term promise for my family and for millions of others”
We have received the first applications for our training programme, which will instruct approximately 200 pre-doctoral and post-doctoral students and clinical fellows enrolled in universities and non-profit academic and research institutions in California. The initial emphasis on training is pivotal, since the large increase in stem cell research under Proposition 71 will require many more highly trained researchers across the state. The grants are expected to be awarded to a maximum of 18 institutions for three years each.
All this is laying the foundation for research that could transform medicine. The institute will give researchers and the public a better understanding of how stem cells work, and further their ability to address disease. It could also help reduce California’s skyrocketing healthcare costs through new medical therapies and treatments for 70 chronic diseases and injuries. Most importantly, it has the potential to bring hope to millions of patients and their families.
I am a passionate patient advocate, but I also am a firm believer in the economic benefits of long-term investment in basic research. In 1978 the University of California at San Francisco defied opponents of recombinant DNA research when it spearheaded the funding of research that led the following year to the discovery of artificial human insulin – which keeps my son Jordan alive today. With so many diseases to research, our odds of success, at least in enhancing existing therapies, are quite high.
As a father, a son, a patient advocate and a concerned citizen, I profoundly hope that the CIRM will lead embryonic and adult stem cell research in the same way that Paul Berg and others led the research into recombinant DNA. If stem cell research makes half the contribution to medicine that recombinant DNA research has done, it will be a remarkable instrument in the battle against human suffering.
