Do you have any official connection to the California stem cell program? Are you a doctor or scientist?
No. I am just a father fighting for his paralyzed son, and the only way to fix him is to advance cures for everyone. Also, my mother died of breast cancer, my sister from leukemia, and I myself am a prostate cancer survivor. So I have some very personal reasons to support the California Institute for Regenerative Medicine and to want state funding for stem cell and other regenerative medicine research to continue in California!
California is investing $3 billion in stem cell research, more than any other state—or nation for that matter, except America-- how are we doing?
We’re doing amazingly well.When we began, critics said we would be lucky to bring even one stem cell therapy to human trials after years of funding; today we have 45 FDA-approved clinical trials underway, completed, or scheduled to begin within 6 months.
We are improving people’s lives. Remember the John Travolta movie, “Boy in the Plastic Bubble”? In the film, Travolta’s character was born with no immune system. He had to stay inside a plastic bubble for his entire life to protect him from germs. Even a common cold could kill him. At the end, he left the bubble and rode off on a horse behind his girlfriend. In real-life, the character he played did not survive. I have talked to his mother. The family did everything they could, but their child died. But now, because of scientists funded by the California stem cell program, there is a cure for that condition. At last count, 18 children have been cured of “bubble baby syndrome”. They can go outside and play like any normal kid. I met one of them, Yvie, and she is on the cover of my book.
More examples: a young man had the generally fatal granulomatous disease, which attacks liver and lungs. He is well now, and studying to become a doctor, as his way of saying thank you to California. Imagine being a blind woman who can now see her teenage children– for the first time. Andsix out of sixrecently paralyzed patients recovered the use of their hands and arms, thanks to stem cell therapy. And every condition we challenge is chronic: long-lasting or incurable.
You can’t guarantee success, of course.
No one can predict the pace of science, or know when treatments or cures will come. Like planting a tree, developing treatments and cures takes time.But if we create the right conditions, both cures and trees become inevitable.
Three billion dollars is a lot of money!
Not compared to the size of the problem we are fighting!Chronic disease is gigantic.Roughly 133 million Americans have one or more chronic diseases or disabilities.That is 45% of the population, and they are not getting well. We are just maintaining them in their misery. Financial costs alone?Chronic disease cost America $2.9 trillion last year. That’s double the national budget, $1.3 trillion this year. No medical system canaffordthose costs—only cure can bring downsuch amountain of medical debt. And the suffering? Incalculable.
Your book’s contents page mentions a “Gorilla Gynecologist”—is that for real?
Yes, one CIRM-funded scientist examined the giant gorilla Koko—remember the signing gorilla? She had no children. The problem turned out to be with the male gorilla. More importantly, the scientist, Dr. Bertha Chen of Stanford, is working to cure female urinary incontinence: the number one cause of women being institutionalized. What happens is an elderly woman gets up in the middle of the night in a hurry to use the bathroom, and she trips and falls and breaks her pelvis. Many men have similar problems with urinary incontinenceas a result of prostate cancer. I do! But Dr. Chen is working to cure the problem with muscle stem cells to strengthen the bladder opening, to end urinary incontinence.
What about paralysis?
Paralysis is hell, every day. Try this. Put a pencil on a desk in front of you. Now pick it up and write with it—using just the inside of your wrists, because your fingers do not work. Paralyzed people endure endless frustration every day.
How does a stem cell therapy work to alleviate paralysis?
Stem cells are injected into the spinal cord, where they help re-insulate damaged nerves.
You interviewed many scientists for your book. Can you talk about some of the possible therapies they are working on?
Diabetes is a vicious disease, the number one cause of adult-onset blindness, and a major cause of amputation of limbs. California is fighting hard to cure it. One of the most interesting possibilities is a devicecalled Encaptra. Inserted under the skin, it converts stem cells into the insulin the body needs. This is being taken through human trials by a company calledViaCyte, Inc., right now.
And cancer? With my family losing so many members to cancer, and myself a prostate cancer survivor—surgery, radiation, hormone shots, the whole works—I am naturally interested; and the attempts to cure are fascinating.
Imagine a tiny monster, with a cloak of invisibility on its back. Like the monster, cancer cells have a protein on them, which makes them invisible to the body’s immune system. But what if we could peel off that cloak? We could kill the cancer by ourselves. That is what one of our anti-cancer therapies is trying right now.
Deafness? There are no deaf chickens—because they can regrow tiny hair cells deep in the ear canal. Humans cannot do this—except maybe with stem cells.
Heart attack? We may be able to grow a repair patch like for bicycles.
What about the controversial embryonic stem cells-- are they still used?
Oh, yes! We use a variety of cells, according to what is needed. Adult stem cells, embryonic, and the new ones which got the Nobel prize for Dr. Shinya Yamanaka, induced pluripotent, where an adult skin cell is reprogrammed into something similar to an embryonic stem cell.
But the embryonic ones get all the attention—where do they come from?
These are microscopic cells which would otherwise be thrown away: left-overs from the In Vitro Fertilization technique. When a couple cannot have babies on their own, one of their options is the IVF procedure. At the clinic, the couple’s eggs and sperm are mixed to make a couple dozen blastocysts, fertilized eggs. Of these, the strongest one or two are implanted in the woman’s womb, where hopefully they will make a baby. But what about the others? Without implantation in the womb, they cannot possibly become children. So, what do you do? Store these little bits of tissue forever– at a monthly fee? Give them to another childless couple? That can be done, that’s fine. Or– dispose of them, incinerate or flush them away? Or donate the cells to research, where good may come.
If there are similar cells available, why do we need embryonic stem cells at all?
An embryonic stem cell line can be used as a model. Instead of testing drugs on a human being, with great expense and perhaps risk, you use cells in a dish of salt water. Also, there are therapies for which these cells may be just the best, like paralysis, blindness, and heart repair. The scientists take the embryonic stem cells, adjusts them to the halfway stage, precursors, so these become the cells you need.
How are research grants decided?
We have a grants review board, out-of-state members to reduce the chances of conflict of interest. Then we have local scientists inside our program who study and evaluate the proposals. Finally, the grant requests and recommendations are put before the 29-member governing board, called the Independent Citizens Oversight Committee (ICOC), and the decision is made, with public input.
Do you have any advice for young scientists?
Come to California!
Does California work with other states, and/or nations?
Yes, CIRM grantees collaborate with scientists in other US states and other countries. To derive the best results, you want all of the best minds in the world working together as much as possible. Every California dollar spent must be spent in our home state. However, CIRMdoeshave agreements with 17 other nations and states, and some of their grants have specifically gone to collaborative work – with CIRM funded work all done in California, but in collaboration with scientists from other states and countries whose work is paid for by their governments and institutions. They pay their scientists and we pay ours, and the knowledge is shared—more bang for the buck! In England, one of our vision therapies was tried on two blind people: both can now read!
Does California share in the benefits, if profits come?
Yes, in lots of ways: first, if there is a big bonanza, the state receives a payment up front, depending on how much we invested. And of course, there will be state taxes on any new products. Also, every new product or therapy has to be made available (and affordable) to low income folks, in a policy approved by the governing board– before that product or therapy can be sold.
The number one way, of course, is saving lives and easing suffering. That is why we fight, to protect our loved ones. And every person cured is someone whose medical bills just went way down. Plus there are “add-on” grants from the Feds when a therapy looks good. Also, and this is a big one, when the 12 new stem cell centers were built, each one had to bring extra money of their own. In this way, $271 million California dollars were leveraged to $1.1 billion, with a B. When you add in the add-ons, we gained nearly $2 billion in new money for the state. This of course meant new jobs as well. Biomed is now the number two industry in California, behind computers, but ahead of aerospace and movies.
Also, we have a variety of educational benefits. First, there is a free stem cell curriculum available to all public high schools and colleges. Second, there is a Summer program called “Spark” for high school students to learn about stem cell research, and gain marketable experience. Third, a “Bridges” Program provides scholarships for low-income deserving college students. That program has helped more than 700 students, many of whom are now working in the biomedical field.
Is there room for more biomed workers in California?
Absolutely! First, on a list of the fastest growing biomedical areas in the country, Northern California is first; Second? Southern California. This is an industry which will last. Consider how many people are sick with incurable diseases. Biomedicine is one of the fastest growing career fields in the world.
How can people get more information about the California stem cell program?
Go to my website, “Stem Cell Battles dot com”, sign up for my free newsletters. Or, look up my books, STEM CELL BATTLES, and CALIFORNIA CURES. Ask for them at the library, or get them online. Most importantly, get involved. Come to our stem cell program’s public meetings. Go to WWW.CIRM.CA.GOV and then click on “public meetings” for the when and where. If you have a chronic illness or injury, or know someone who does, come and be a part of the answer.
Also for more information, go to Americans for Cures, where you can find helpful details and also sign up to be a patient advocate ambassador for stem cells.
Is the money all spent?
No, there is about $400 million left in uncommitted funds, enough to continue until about midway through 2019. There is an effort underway right now to raise bridge funding ($220 million) to take us into 2020. After that, my personal hope is that we will be on the ballot for additional funding. Bob Klein has said that if California supports it, he will lead the charge again.
Money is tight in this state, as it is everywhere—some say we cannot afford it.
We cannot afford NOT to do it. Which is less expensive, to fix a problem, or ignore it?In 2004, California chose to fight. Lives have been saved; suffering has been reduced. The development of curesmoved forward. In 2020, I hope we will do it again.
Don Reed's NEW BOOK - "Science, Politics, Stem Cells and Genes: California's War on Chronic Disease"
California’s War on Chronic Disease
By Don C. Reed, World Scientific Publishing, April 2023