2009 WORLD STEM CELL SUMMIT EXCEEDS ALL EXPECTATIONS
By Don C. Reed
“Breathes there a man with soul so dead, that never to himself hath said, “this is my own, my native land…?”—Sir Walter Scott.
High on the side of the Hilton Hotel is a glass-walled bridge connecting to the Baltimore Convention Center: crossing it was like walking on plush carpets through the sky.
The 2009 World Stem Cell Summit was housed in three ballrooms, each big enough to host its own convention. High ceilings? You could buzz a plane around in there!
Surrounding the ballrooms was a collection of stem cell displays: biomed companies, exhibits from colleges, states, nations—and a changing set of science posters, each one deserving of a conversation with the scientist standing beside it.
Martin O’Malley, Governor of Maryland, greeted us on opening day. Movie-star handsome and a superb speaker, Governor O’Malley announced that Maryland and California would be cooperating on stem cell research: because “healing people is our American pride!”. He reminded us that stem cells are “weapons of mass salvation”; that “Maryland has spent $56 million on stem cell research in the last three years”; that with only 2% of the nation’s population, Maryland controls 8% of America’s biotech; “Maryland has always fought above our weight class!”
Bernie Siegel of the Genetics Policy Institute (primary sponsor of the event) had a special advocacy award to honor the Governor—who then returned the favor by giving Bernie one as well!
This is the fifth such Summit, and the best. The only problem was an embarrassment of riches: literally too much to choose from: a three-ring circus jammed with activity.
For example: how could I, as a medical research advocate, choose between the following three panels?
- Business models for successful stem cell companies– and Innovative Funding Mechanisms;
- Stem Cells in Clinical Treatments and medical tourism;
- Stem cell research progress report: Parkinson’s/ ALS /Neurological disorders.
I really needed to attend all three.
“Hey, Jeannie Fontana is speaking!” said Melissa King, stalwart staff leader at the California Institute for Regenerative Medicine. That settled it. Dr. Fontana is not only a dedicated scientist, but also a down-to-earth friend.
So, come with us into that room, and see what happens next.
Four people with only microphones between them and a crowded auditorium–
And controversy! By far the most heated (Bernie would say “lively”) discussion came on this issue: “stem cell tourism.”
Think what that means.
Stem cell tourism is going to another country and trying a stem cell treatment not available—or not allowed– in your own nation.
Would you do it? Imagine if doctors told you there was nothing they could do to alleviate your condition, or your loved one’s? Would you go abroad, try a perhaps untested medical treatment? Would you spend your life savings on it?
When my son Roman was first injured, paralyzed from the shoulders down, after a college football accident, I would have done anything (still would) to ease his suffering. But back then, if someone in a lab coat had told me eating dirt was a treatment, I might have leaped for a shovel. Today, I would ask for the mud to be analyzed.
I have had fifteen years of education in a subject no one would want to know. I have learned to respect the enormity of the challenge, and been forced to accept the long patience, because that is the only chance we have to win.
But the emotion of needing cure– like air when you are choking—that never goes away.
When customers are desperate, snake oil salesmen can get away with a lot.
On the other hand, what if there was a genuine cure, and another country found it first, and only politics was in the way?
And how are we supposed to know what is going on anyway, when scientists are so hard to understand?
Those are the questions: here are the panelists.
Grant Albrecht has a golden voice and an actor’s face and presence—but it hurt to watch him stagger from chair to podium. He spoke of the grim reality of Transverse Meyelitis, a debilitating neurological disease. (Dr. Fontana describes it as “a progressive spinal cord injury, without the injury itself”.) Grant had to give up a starring role in a Broadway play, when his legs would no longer support him. He began a search around the world, hunting for a cure. $50,000 went to one company, $25,000 to another. He would have considered almost any method, feeling that he was on his “last legs”. One comment from Grant seemed particularly important:
“We have a problem like a five-alarm fire, and the government is giving a drip-drip-drip response.”
And now, the central figure: Alex Moffett, CEO, Beike Holdings. Beike, headquartered in Thailand and China, is one of the world’s largest stem cell tourism destinations.
Mr. Moffett said his company has 400 employees, 8 Ph.D’s, 100 MDs. His voice was soft, almost hypnotic: a charming unflusterable personality. He stated that his company, has treated 6,100 patients with adult stem cells. (Only adult or cordblood cells, no embryonic or iPS.) Mr. Moffett acknowledges “mistakes were made” in early years, but now he wants to go ahead and do things right.
He tried to make a distinction between good and bad stem cell tourism: calling it bad when cures are promised, and physicians not properly trained; but good when there was oversight, top quality labs, and transparency.
Some of his company’s centers were in China, he said, and that nation has just passed stringent new guidelines. The clear implication was that if Beike was not legitimate, they would not be allowed to practice in China.
The next speaker. Doug Sipp, immediately stated that China is “handsomely paid” by Beike, implying at least the possibility of conflict of interest. He reminded us that even though China is an unquestioned superpower, it also faces great money problems.
(I hasten to add that I have enormous respect for China’s scientific efforts. I spend an hour a day struggling to learn Mandarin, so I can at least show respect when talking to Chinese scientists, who are making an enormous contribution to regenerative medicine.)
Mr. Sipp worked four years (2005-2009) for the International Society for Stem Cell Research (ISSCR), and is also Secretary-Treasurer of the Asia-Pacific Developmental Biotechnology Society and other international groups.
He asked: if what Beike does is legitimate, than why not share their data, if that data does exist? He cited the need for “appropriately-designed experiments with proper peer review”. He also noted that Beike’s website had originally claimed treatments for 26 diseases, but now only claimed 12.
He suggested anyone in the audience considering stem cell tourism should first visit the ISSCR website for a free “PATIENTS HANDBOOK”, with points to consider before allowing yourself to become a research subject.
Someone (from the audience?) mentioned a website: www.Quackwatch.com.
The third member of the panel was the aforementioned Jeanne Fontana, M.D., Ph.D, who serves on the California stem cell board as a substitute for Dr. John Reed, of Burnham Institute. Dr. Fontana has a sunny disposition, a personality that engenders good feelings.
But she was not smiling today.
Dr. Fontana lost her mother to Amyotrophic Lateral Sclerosis, (ALS), Lou Gehrig’s disease. This is a deadly serious matter to her. When her mom was diagnosed in the late nineties, Dr. Fontana did a world-wide literature search, and found no cure. Now, there might be as many as 170 offshore clinics offering “stem cell treatments”—were they for real?
She spoke about the need for independent testing for treatments, not just in America but everywhere—and that testing should be done by someone without a financial connection.
She had two main questions for Beike: 1. Do patients improve after the treatments offered? 2. Is there data, and if so, why not share it?
This need for accurate data was echoed by what seemed most of the audience: if Beike is for real, it should gather and share its results.
Some audience speakers expressed polite skepticism; others seemed angry.
I tried to listen dispassionately, to hear both sides.
However, I felt my teeth grinding together when I heard that Beike treats patients with spinal cord injury paralysis.
It has been a decade and a half since my son was paralyzed, and I have been alert for a cure ever since. “Roman’s Law”, the Roman Reed Spinal Cord Injury (SCI) Research Act, has funded (directly and with matching grants from the NIH, etc.) more than $62 million in research toward that goal.
If there was a substantive treatment, I am reasonably certain I would know about it.
I know people who have gone overseas to have the Olfactory Epithelial Glia (OEG) treatment, where a surgeon reaches a scalpel up through the patients’s nose, scrapes off part of his or her brain (this sometimes removes the ability to smell) the only part of the central nervous system that regenerates itself—and spreads it like jelly on the injured spine—for maybe $40,000– and, in my opinion, it does not work.
One audience member rose to say a positive word on behalf of Beike. She stated that her loved one had gone there, been given an undescribed treatment, and did recover some function. (This was a blindness issue, and the excitement was that the patient reportedly could see, at least somewhat, afterwards.) However, she added, there was no follow-up.
“Why was follow-up so important?” I asked Dr. Fontana later.
“Because the treatments themselves may have negative consequences.”
For example, her mother was given “glutathion, an anti-oxidant, a very mainstream alternative medication”. As a side effect, it gave her mom diarrhea. For most folks, that would be only a minor inconvenience. But for ALS sufferers (who may lose their ability to swallow) the inability to retain fluids is life-threatening. Dr. Fontana was able to get her mother the attention she needed, a nasogastric tube for feeding, and an IV insertion, but even so “there was a drop in function after that, from which she never recovered.”
Even something as seemingly innocuous as cord blood (used by some of the clinics which offer “stem cell treatments”) has the possibility of negative consequences. There must be follow-up, so we can know exactly what happened, good or bad.
Remember Celebrex, the pain-reliever? One of its side effects was apparently heart attack—we need to know these things.
Someone commented that the anecdotal stories from patients and their families are not always reliable, their judgments clouded, because they (we) want so badly to have hope.
Linda Powers of Toucan Industries stood up, and made an impassioned plea for respect for Beike’s representative, saying she was “staggered by the savagery of the criticism”, and the “sweeping generalities” of the comments from audience and panelists.
I did not feel anyone was being rude, but there was definitely tension, and her point was important; courtesy is an essential ingredient for reasoned discourse.
Dr. Jeanne Loring stepped to the mike. This top-notch scientist is always on the alert for anything which might help or hurt our endeavor.
She stated that she has analyzed hundreds of stem cell samples and had a standing offer to analyze cells for any patient who is considering an overseas procedure: she asked Dr. Moffett if Beike would provide her with samples of the stem cells they use in patients.
And Alex Moffett, CEO of Beike, gave a one-word response. He said: “Yes”.
It will be interesting to see what happens next….
In a private conversation several days later, Dr. Loring told me: “I am always suspicious of any kind of clinical use of stem cells that does not have oversight—an independent agency’s verification of the results.”
She also stated that her analysis of the stem cells should in no way be construed as an endorsement, but merely a service for the patients. “I offer this as a free service on behalf of patients and I will not endorse any company’s approach. This is the principle of caveat emptor—the buyer deserves to know what he or she is buying.”
I also emailed a representative of Beike, told him I was writing an article, and asked him what were the spinal cord injury treatments given there.
He replied: “For spinal cord injury we provide cord mesenchymal stem cells and sometimes we provide mesenchymal stem cells from the patient’s own bone marrow. This is delivered by injections into the spinal cord fluid and at least one IV.”
—Steven Marshank, personal communication.
So—would I take my paralyzed son to Beike?
First, while I am neither scientist nor doctor, I do not believe that adult or cord blood stem cells have the power of embryonic, SCNT, or iPScells. Among the latter three is where I believe the main answers will be found.
Second, I cannot recommend any treatment that has not been systematically documented, tested, and proven.
I have faith in the carefully documented grueling years of hard work put in by scientists like Drs. Hans Keirstead and Thomas Okarma of Geron, battling their way toward human trials with embryonic stem cells. Their struggle is long, slow, arduous and frustrating, (more than seven years work, and 22,500 pages of documentation, enough for 50 books!) but it will be worth it in the long run, because we will know exactly where we stand. If it succeeds, we know what was done right, and will be able to do it again, reliably. If not, we can find the mistakes in the documentation.
Will I still listen to what companies like Beike have to say?
As moderator Bernie Siegel put it, while the Summit does not endorse any stem cell treatment companies or organizations, the conversation itself is vital.
The lines of communication must remain open.
And that is where we must leave it for now.
Three days, jammed with memorable moments.
If you blinked, you missed something.
For example, Mike West, founder of Geron and now Biotime. This great scientist and businessman pretty much began the biomedical field, bringing together ace scientists Jamie Thomson and John Gearhart to form Geron. I looked forward so much to hearing whatever he wanted to say.
But I had to miss his speech!
I was invited to appear on a National Public Radio Show—side by side with Dr. John McDonald– Christopher Reeve’s neurologist.
It was great to hear Dr. McDonald talk—I was there as a father of a paralyzed young man and an advocate for research; he was a champion of focused rehabilitation. He cited the crucial importance of “in-home exercise”, therapy that can be done without needing to travel to an exercise center.
They introduced us with a joke, saying “The doctors are in the house!”—I appreciated the promotion, but had to make clear there was only one physician present: the Director of the International Center for Spinal Cord Injury at Kennedy Krieger, he is also Associate Professor of Neurology at Johns Hopkins.
You can hear the interview, if you like: Google it: look up Maryland public radio: Midday with Dan Rodricks, Tuesday September 22, noon to 1.
I was able to use my favorite statistic, that chronic disease and disability costs America $2.3 trillion a year, more than all federal income taxes ($1.8 trillion) combined—and of that mountain of money, 75% goes to treat chronic (incurable) ailments– which is why no medical health program can succeed without an element of cure.
And I tried to express the emotion that united us…
The future of stem cell science is like the first sight of land in the middle of the ocean—you see the tops of trees on the horizon, a patch of green that is a new land, waiting…
And then we hurried back to the Summit!
So many amazing individuals to meet, old friends, and new, everybody special!
Like Dr. Fanyi Zeng, the Secretary-General of the Chinese Society for Stem Cell Research. This tiny vigorous exclamation point of a person reminded me so much of the famous actress Zhang Ziyi, star of Crouching Dragon, Hidden Tiger. A graduate of the University of Pennsylvania , Dr. Zeng’s English is perfect, but she went through a lot of science, very fast: my pen and brain had trouble keeping up.
Her subject was the comparison between the new kind of stem cells taken from skin, (Induced Pluripotentiary Stem Cells, iPS) and the embryonic standard.
She spoke about mouse induced Pluripotent stem cells, which resemble mouse embryonic stem cells. She wanted to ask, how alike are they? She used a rigorous test, (the scientists in the room were nodding vigorously) and found them indistinguishable.
This is of course hugely important. If we can get the same results from iPS cells that we achieve with hESCs, then we can move forward faster on the research– without the endless opposition of the religious right.
Dr. Jeanne Loring spoke. Director of the Center for Regenerative Medicine at the Scripps Research Institute in La Jolla, California, she was looking at human cells with a molecular analysis, studying the machinery that makes one cell type function differently from another. She also found that the two types of stem cell were essentially indistinguishable. She cautioned, however, that we have ten years of experience with embryonic stem cells, and only two years with the new iPS cells.
As she said later, “We need to test them in many different ways, compare them to hESCs, find out if they have the same credentials. Only then can we feel comfortable about developing therapies using iPSCs.”
Always dapper and elegant, looking like he just stepped off the cover of GQ magazine, Dr. Jose Cibelli spoke on the same subject, with what appeared to me to be very similar conclusions: that iPSCs look much like hESCs. That means a lot, coming from an SCNT expert. (Personally, I feel we have not even begun to fully understand the possibilities of Somatic Cell Nuclear Transfer, SCNT, of which Dr. Cibelli was one of the earliest proponents.) That is a lot of letters, but they matter.
And as one of Michigan’s champion scientists spoke, I worried about his state.
Michigan fought a terrific battle to overturn some of the nation’s most cruelly restrictive research laws—an effort supported by many volunteer organizations across the country– and we won.
But, the opponents of research are trying to bring the restrictions back, one way or another. This year, not one but six connected laws will be thrown at the Michigan scientists, trying to give the research (in my opinion) the death of a thousand cuts, making it incredibly complicated and frightening—and scare off any research in that state.
Internationally renowned, Dr. Cibelli is also the Associate Scientific Director of the Program for Cell Therapy and Regenerative Medicine of Andalusia, Spain.
A native of Andalusia, Dr. Natividad Cuenda spoke. She discussed agency’s work on cellular reprogramming. Her goals are to translate into useful forms the results obtained in three research programs: cell therapy and regenerative medicine, clinical genetics and genomic medicine, and nanomedicine. Andalusia has multiple tissue banks available to their scientists: spinal fluid bank, stem cell bank, tumor bank, and a DNA bank. As Executive Director, she directs the agency to plan governmental resources, to incorporate the stakeholders, as well as working on how to share knowledge, facilitate cooperative research, and help to sponsor non-commercial clinical trials with advanced therapies…
I am glad Dr. Cuenda is on our side—but I am not entirely certain she sleeps!
And speaking of internationalism, Canada has spent $80 million on a Stem Cell Network, to develop standardized methods for stem cell researchers.
“Investment in research is an answer to our moral obligations: an act of faith as well as reason”, Canadian spokesperson Drew Ryall said.
Canada also initiated an exciting symbolic step forward, a linking of arms for research.
They want people to visit their website, and put their name in support of stem cell research. It is easy. I did it myself, and I am computer-challenged. Just click on the link, go there, and see if you like it as much as I do.
I got so excited about this idea, I emailed the Canadians after the event, asking for a paragraph of explanation—and here it is, including the link:
“The World Stem Cell Summit marked the release of the Stem Cell Charter, a major global outreach initiative. Released by the Canadian Stem Cell Foundation, and backed by several international organizations, such as the Genetics Policy Institute (GPI), Juvenile Diabetes Research Foundation (JDRF) and the Stem Cell Network (SCN), the Charter is a one-page, interactive, web-based document that outlines a framework to move stem cell science forward responsibly. The Foundation aims to create an international grassroots community of scientists, business people, policy makers, patient advocates and members of the public who believe in the importance of stem cell science and will lend their time, voice and other resources to moving the field forward. We’re asking everyone to visit stemcellcharter.org (hyperlink: https://stemcellcharter.org), read and sign the Charter and send it to friends, family and colleagues. While you’re on the site, check out “Rock Star Scientists” and mini videos about different areas of stem cell science.”
Michael Werner spoke about the newest effort to bring the stem cell world together, through the new Alliance for Regenerative Medicine. This is going to be big, folks.
I want to do a separate article about it, after I have a chance to talk to Mr. Werner. I have put in a couple of calls, but we have not connected yet, and I did not want to discuss it without checking with him first.
Former Congressman Jim Greenwood spoke. He is now the leader of BIO, the Biotech Industrial Organization. Representing more than 900 companies, BIO works to give the emerging industry a voice. This is a crucially important organization, although understaffed and overworked. I know the primary folks involved, stellar advocates Tricia Brooks and Patrick Kelly. Tricia, long-term fighter for the cause, famously interrupted her honeymoon to visit the government of Costa Rica– to ask them to reconsider their stance on stem cell research. Patrick Kelly is the state efforts man, great person to talk to if you have a question on a state stem cell effort.
“We need public policy environment conducive to growth” said Mr. Greenwood. Even now, when the Bush limitations have been largely repealed, there is reason to fear “mischievous amendments”.
“Proactive leadership must drive the research, not merely permit it”, the former Congressman said.
Dean Tozer, representing Advanced Biohealing, spoke about something called a Dermagraft, a healing “skin” for diabetic skin lesion, which costs $1,425 each. Expensive—but then I thought about pressure sores paralyzed people get, like ulcers on heels or hips, which can rot flesh to the bone, and keep a person bedridden for months. It was complications from a pressure sore which, I believe, led to the death of the great champion Christopher Reeve.
Biospherix offered a new kind of “clean room”, the Xvivo Workstation, to allow perfectly sterile environments—and it appears to be separable, for ease of different projects. I have no idea if it is any good or not, having no expertise in that field, but it looked like it was something valuable, less cumbersome and space-consuming.
Alain Vertes of Roche, the gigantic pharmaceutical company, spoke about his company’s recent purchase of Genentech, the biomed company. Roche has “prudent optimism” about regenerative medicine, he said. I had a chance to speak with Dr. Vertes later, and found out he has a son whose name, Romain, is very like my son’s, Roman. I told him our sons shared a name– and we shared a dream.
It was interesting to me that Roche worries not so much about losing money by making a wrong investment, but the bigger fear is the loss of momentum, going in a wrong direction.
Devyn Smith of Pfizer spoke. He wrote a fascinating article in the book of the Summit, called “Creating Partnerships with Large Pharma?” which I read three times.
Dr. Smith stated that Large Pharma (and you don’t get much larger than Pfizer) needs to cooperate with the regenerative medicine movement for a very simple reason: it is in its best interests. This was important; people have suggested that the drug manufacturers might not want us to succeed, because they make tons of money selling medicines, whereas regenerative medicine is to fix people, not just maintain them in their misery.
However… for the first time in decades, large Pharma is losing money….. a loss of 1-3% this year, if I understand correctly– why? Their time of patent exclusivity is expiring.
They need to find new ways to heal people… I recommend the article strongly.
Representative Michael Castle (R-DE) was there! This dedicated man has been irreplaceable in the struggle to advance stem cell research. With Diana DeGette, Congressman Castle co-authored the Stem Cell Research Enhancement Act, twice passed by Congress and the Senate– and twice vetoed by President Bush.
I was delighted to have the chance to say thank you to him publicly: when my son rises from his wheelchair and walks again, I will feel that Congressman Castle (R-DE) personally gave him a helping hand.
Bob Klein, the Chairman of the Independent Citizens Oversight Committee, (ICOC) was up next. Due to the nature of California’s stem cell program, (many public meetings!) I can often hear Bob speak, sometimes a couple times a week, but I never miss the chance; he always has something new to say.
Bob mentioned a recent press article claiming that a small number (perhaps 5%) of research buildings funded by CIRM might not be able to meet their construction schedules. The article, said Bob, had it backward:
“In today’s economic climate, a 95% success rate is phenomenal!”
Did you know that in the past 2 years CIRM scientists have published 330 scientific articles in reputable journals? These are additions to stem cell knowledge, the scientific dialogue that must occur if we are to win.
Now some things about our stem cell program I have to hear several times before I can understand–over and over, until suddenly there is a sort of click when things fit together—like, oh, that’s what that means.
Recently, Bob has been talked a lot about the importance of stability of funding.
Usually, when he talks about bonds or money, it makes my eyes glaze over…
But this was different.
Remember when the CIRM provided $272 million for buildings, and donors contributed an additional $880 million…
“Why did those big donations happen now?”, Bob asked.
“That money was out there, waiting to be donated, perhaps sitting there for decades—why was it donated right now?” Bob asked.
Because, he said, for the first time, our stem cell program provided reliable funding: a long-term commitment. Donors contributed so hugely because they wanted to be part of something lasting, that could make a difference.
Our research program will provide reliable funding for at least ten or twelve more years; it may even become a permanent institution. That was why the big-buck donors stepped up, because California’s program was not something that would vanish in the next budget battle. We have proved our staying power, and our funding source is reliable.
Maybe something similar should be done for the national government, making a reliable funding stream for regenerative medicine, not subject to the whims of politics…
New York’s stem cell program is also cause for pride.
The Empire State’s investment in stem cells is already paying off. New York scientists have developed what may be the world’s first patient-specific ALS cell line, a huge breakthrough in Lou Gehrig’s disease, so the progress of the disease can be followed in a Petri dish instead of a terminally ill person.
I thought of Jeannie Fontana’s mom, and my friend Jon Ames, who lost his son David to the terrible disease. Jon had taken his son all around the world, trying everything that looked even reasonably feasible: to no avail. Now, New York has brought us closer to the day when ALS will no longer be a death sentence.
New York also created a similar stem cell model of type 1 diabetes—and there are 26 million diabetics in America.
Think what this means, in money terms alone, if we found a cure! A person with type one diabetes faces annual medical costs of roughly $13,243. Without diabetes, that same person only pays about $2,540—by finding a cure, we save eleven thousand dollars per person—every year! Nothing cuts costs like cures.
Susan Solomon of the New York Stem Cell program spoke on their decision to pay women who donate eggs.
Bravo, New York!
This is truly wonderful. When a woman donates eggs to help another couple have a child, she can be paid a significant amount of money, as much as $50,000. But if she wants to donate eggs to help save lives and ease suffering, she cannot be paid? That does not make sense to me.
Rumor has it that Brooke Ellison (the paralyzed young woman Christopher Reeve made a movie about) worked hard on that issue, supporting New York’s courageous and principled stand. (Bernie, by the way, mentioned Brooke’s speech to the convention two years ago as the most moving advocate testimony he had ever heard.) I kept looking around for Brooke, but she could not make it this year.
Cure is for everyone, but no one deserves it more than those whose bodies have been crippled in service to the country: our soldiers.
An important panel discussion was held on Regenerative Medicine for Wounded Soldiers and Civilians—what happens to our brave young men and women when they are carried home wounded from the battlefield? What if there was a way to make them whole again, to re-grow their arms or legs? It is my understanding that the Defense Department has a $250 million dollar grant to try to regenerate limbs—but they are only allowed to use adult stem cells! This was begun under the Bush Administration, and I hope will be adjusted.
How is the rest of the world doing?
Linda Powers of Toucan Enterprises took us on a whirlwind tour of World Biomed. When the website (www.worldstemcellsummit.com) has everything together, it would be valuable to look up her presentation, which shows you the other countries’ progress. But in person her material was too interesting, and went by too quickly for me to capture it.
One speaker pointed out that Germany gets stem cell assistance from Israel. Is that not wonderful, that former enemies are now working together for the good of their people?
Germany also announced an official cooperation with the California stem cell program.
Cancer researcher Dr. Curt Civin of Maryland was a pleasant surprise to me: plain-spoken and brilliant: he provided well-thought-out material, completely understandable. Best known for his 1984 discovery of a way to isolate stem cells from blood, (for which he won the 1999 National Inventor of the Year Award) he reminded us of a crucial fact: the NIH funds 90% of all biomedical research in the United States .
He pointed out the vital necessity of also keeping track of state efforts: quoting Supreme Court Justice Louis Brandeis: “The states are laboratories of democracy”. He noted that 20 states have new stem cell laws under consideration, either positive or negative…
JDRF received a richly deserved award. Every American owes a debt of gratitude to this hardworking organization; their advocacy underlines that we can only win as a field; that research funding and academic freedom benefits all, not just those with one condition.
For grassroots advocacy, Danny Heumann accepted an award on behalf of Cure Michigan and Michigan Citizens for Stem Cell Research & Cures. Michigan has worked so hard for its freedoms, and cheerful Danny was just the right person to share the joy.
Stanford’s Dr. Irv Weissman, bearded and burly, gave off a friendly warmth, like a woodstove stove in Winter. Often called the father of adult stem cell research, he is a tremendous advocate for scientific freedom.
Wise Young pointed out serious shortcomings in the Obama stem cell research funding policy—like that SCNT and parthenogenesis were not eligible for funding.
“We must raise our voices, tell Congress and the President. There is no law which prevents our funding…parthenogenesis, but the NIH is restricting itself…”
If a method of deriving stem cells is not effective, science will figure that out. But why should the NIH block something from funding—a political decision, not a scientific one?
So much: so many good people, everywhere you looked, champions across the hall: like Amy Comstock-Rick, President of CAMR, the Coalition for the Advancement of Medical Research—and a dedicated advocate for Parkinson’s Action Network.
Dr. Jane Lebkowski of Geron had the unenviable task of speaking on a day when we were all dying to know what was going to happen with her company and the FDA and the spinal cord injury human trials of embryonic stem cells. She could not, of course, tell us what was going on; nothing must be allowed to jeopardize this great leap forward. But her excitement was clear, and her detailed knowledge of the subject and the field was exactly what was needed. My personal reading of the situation is that everything is moving forward exactly as it should: carefully, but expeditiously.
Peter Kiernan (of Christopher and Dana Reeve Foundation) gave us the inside story of how the Christopher Reeve Act finally passed–hidden inside a land use bill! How sad, that something so wonderful had to be essentially tricked into being.
Kiernan also spoke on the CDRF’s important survey, revealing a staggering undercount of spinal cord injury—not two hundred fifty thousand people paralyzed with an SCI — but one million two hundred fifty thousand! That’s right. The previous estimate was literally short by a million people…
He spoke about the opposition, which he dubbed the “armies of the night”, better organized than we, and that advocates should learn to speak with a united voice.
He cited scientific progress—nerves have now been connected to muscle, which was once thought impossible, but now we are doing it—as embryonic stem cell research allows us to study spinal cord injury in a dish of saltwater, instead of a patient.
Josh Basile is a soft-spoken new power in the advocate arena. Josh said a ocean accident paralyzed him, and took his voice– but he got it back through advocacy.
Sabrina Cohen brought a spark of glamour to the plain grinding hard work of raising funds for research. Her outfit recently raised $25,000 for Dr. Hans Keirstead, for example, targeted and effective funding. For more info, check out her organization at www.sabrinacohenfoundation.org.
Maryland Patient Advocate John Kellerman, Maryland Stem Cell Research Commission, was fighting both Parkinson’s and cancer. His beautiful daughter stood beside him as he expressed a simple dream, that he might one day be able to dance at her wedding.
Lunch conversations with experts let the conversation continue on an up-close and personal basis—making friends and swapping business cards. (Hint: if you don’t have a card, get one made; you can do it cheaply on the internet, and you really need some.)
How about a World Premiere? The Summit was indeed the global premier of BioBusiness.TV, a ten-part series, “Stem Cell Review” starring top names in our field.
Passing in the hall was Dr. Steven Bauer, Chief of the Cellular and Tissue Therapy Branch of the FDA. This is the man who oversaw the committee which decided if embryonic research was ready to go ahead. As I had been concerned about what seemed to me unreasonable holdups on the stem cell human trials, I called up his office, and he was kind enough to spend time on the phone, patiently answering questions. We did not always agree, of course, (and he could not discuss the Geron project at all, which was appropriate)– but he is a genuine scientist, and a caring and dedicated public servant.
NIH’s Ann Hardy was present as an expert on health surveying and epidemiology, so we can know more precisely the nature of the diseases we are up against.
I had the privilege of speaking on an advocates’ panel—talk about great co-workers!
Ellen Arnold is one of the amazing Texans for the Advancement of Medical Research: working with TAMR, she volunteers so much time, people sometimes forget she is an actual lobbyist, supposed to be making a living at this. But if you spend a little time with her, you understand the depth of her commitment. Ms. Arnold spoke about the avalanche of anti-research legislation Texans have had to contend with for years.
Mary Wooley, President of Research!America, said much that resonated with the room; you could feel that tingle when speaker and audience connect.
We need to raise the overall awareness of science in America, she said. If you ask a citizen to name a scientist, they will usually think of Einstein, but after that…usually no one. How many movie stars, athletes, politicians can we name? Dozens. But folks whose work saves lives and eases suffering? We need to bring scientists into the public eye, as the fascinating people they are.
She spoke about the “Starbucks Test”. If you were to meet your Congressional Representative in Starbucks, drinking coffee–would he or she recognize you? Would they know what your issues are? As advocates, we need to be in such close contact with those who represent us, that they recognize us instantly
The third member of our panel was Howard Zucker, who served as an Assistant Director-General of the World Health Organization. An astonishing individual, as a college student he designed neurological experiments which were performed during astronaut trips to outer space. Several years ago, Dr. Zucker wrote a paper for the Federal Working Group on Regenerative Medicine: Bernie Siegel regards it as a blueprint for the emerging biomed industry. Now at last, it seems to be gathering the attention it deserves
When it was my turn to speak, I had fun, and hope the audience did not suffer too much.
I told how a line in the 1931 movie classic “Dracula” helped me sway some religiously fundamentalist relatives: “The blood is the life” is the line from the movie, but it originally comes from the Bible, Leviticus, Chapter 17, verses 11 and 14. We were at a big family reunion, and there came a deep hush when the subject of stem cell research came up. So, I did for them my Bela Lugosi Dracula imitation, ending with “the blood is the life…”—and then got serious, pointing out that there is no blood at all in stem cell research—no implantation in the womb, nor any child at all—and one interpretation of the Good Book verses is that, life begins when the blood flows in the veins. Since that does not happen until about the third week inside the mother, stem cell research would not be against Biblical teachings, because it does not take place in the womb. That argument worked with that audience. They looked it up in the nearest available Bible, verifying according to different translations—and that was it.
I spoke about the need to support biomed, to encourage the new industry with governmental support and tax shelters, exactly as we did with the computer industry, which now employs millions
Biomed must think of itself as a new Defense Department, for it saves lives just as soldiers do—and it is the foundation of a new and permanent economy.
At Bernie’s request, I spoke on both “zero-budget” campaigns for stem cell legislation, (Roman’s law, which funded Dr. Hans Keirstead’s work, now brought to human trials by Geron) and a professionally-funded campaign (Proposition 71, California’s six billion dollar effort), which is of course far better– providing you can find the funding. There is, unfortunately, only one Bob Klein, to give his life savings to fund a campaign, and then work almost five years free as the new program’s chair.
Of course I spoke about Christopher Reeve, our movement’s champion. Not a day goes by, that I do not take strength from his courage and his wisdom. I read the line from his letter to our family: that one day he and Roman would “rise up from their wheelchairs, and walk away from them forever”.
Change did not come in time for Christopher. Our champion has fallen but the flame of his faith still lights our way; America—and the world– has taken up the torch.
In the question and answer period, Dr. Mark Noble stood up from the audience. White-haired and muscular, he looks more like a retired football player than the pioneer of stem cell research which he is. In 1983, he co-discovered the first precursor cell isolated from the Central Nervous System. In 26 years since, he has not only lived in the lab more than the average two scientists, but has often taken a stand politically, defending our research.
When he said he had a “difficult question”, I got a little nervous. After fifteen years listening to scientists, I can keep up if they talk slow—but a difficult question? I was wishing Dr. John McDonald was sitting up there beside me, so I could pass it off to him!
Then came the question: what can scientists do better, to assist advocates?
“Keep doing what you are doing”, I said: “As advocates, we support scientists, so you can do what we cannot.” Scientists are doing the impossible with the invisible, using microscopes to find ways to fight incurable disease.
But– there are also chores no scientist wants, but which must be done nonetheless.
First: be involved politically; otherwise, those who know nothing will be making the decisions– like whether or not to allow research funding– or if it can be done at all. For example, it bothers me to so often be the only member of the public to attend our California stem cell program meetings. Where are the scientists, at meetings which may decide the destination of literally hundreds of millions of dollars?
Second: talk small. People process new information at about an 8th grade level: Junior High School level. If you are talking at the Doctoral level—maybe the equivalent of a 20th grade education—we will not understand you. The finest idea in the world cannot be supported, if it is not clear. Grab your local teenager, and explain your project to him or her. If they run out of the room, that is a clue; your presentation might need work.
Three, we must help each other. Ellen Arnold was kind enough to mention a small favor I was able to help with: on a crucial Texas stem cell vote, she asked me to locate ten scientists who could “talk people” and who would make phone calls to Lone Star lawmakers. I was able to hook her up with scientists, and one of them—the great Dr. Larry Goldstein of San Diego—was so amazingly kind that he actually flew to Texas, and spent time with a key legislator. That legislator’s vote meant the difference; a cruel and short-sighted law was defeated.
Texas is still free. The research we support is still not funded—not yet—but because of the work of Texans for the Advancement of Medical Research, the opposition has not been able to criminalize it. People like Joe and Nina Brown, literally breaking their own health, fighting for research which will benefit others. They will prevail.
One day, Texas will be a center of world biomedicine, and it will be, in large part, because of TAMR.
I want to close with a story about Bernie Siegel’s wife. Lovely Sheryl is a dear person, always with a smile to share. I thanked her once for sharing Bernie with the world, because it has to be difficult sometimes, Bernie being so involved with all the endless chores he does. She just smiled and said, “You’re welcome!”
But this particular incident happened at the awards ceremony dinner, when we were all leaning back, our bellies full of good food, our minds jammed with more information than we could process at the moment. I was just looking around to see I could wangle an extra dessert… (no, I didn’t get it; they were wise to me).
Sheryl walked up to the microphone, tapped it to make sure it was working. She said that several months ago (March, I think) she had wanted to have a birthday party for Bernie– who had declined.
“How can I have a party?,” he said, “My friends live all over the world, who could I not invite?”
Which is of course perfectly true. International Bernie lives on a plane more and more these days, speaking, networking, making friends for the cause wherever he goes.
So Bernie put his foot down, and said no. As any good wife would do, Sheryl ignored him—and brought a little cake with candles to the stage.
“This is Bernie’s birthday party,” she said, holding up the cake; “You are his friends.”
The ruckus we raised let her know she had that right.
The World Stem Cell Summit was indeed a party—and a wonderful way to celebrate Stem Cell Awareness Day.
And, there is a present waiting for you—the entire conference will soon be available online, free, at: www.worldstemcellsummit.com.
P.S. A special advocate shout-out to Dr. Elizabeth Blackburn, who was just named a Nobel Prize winner for her work with telomeres, the basis of embryonic stem cell research. Readers of this column will remember her as the member of the Bush Presidential Bioethics Commission, who was removed from that body, apparently for her continuing strong support of research not favored by that President.
Thank you so much, Dr. Blackburn, and congratulations from the millions of people who will benefit from your work.