A new article out by Susan Mitchell covers the key elements of a brewing, serious conflict in Ireland over stem cells. You can read the piece here, but warning you have to pay to read it.
Here in this blog post I analyze the situation and give important quotes from the article.
A pro-adult stem cell and anti-embryonic stem cell (ESC) research organization was recently launched in Ireland: the Adult Stem Cell Foundation of Ireland (ASFI).
In my opinion ASFI seems in many ways to be similar to the U.S. Family Research Council (FRC) that American organization that says all adult stem cell research, no matter what, is good and that all ESC is bad.
An example of the extreme, sometimes anti-scientific nature of the FRC is their disrespectfully calling the American National Science Foundation (NSF) “ignorant”.
Beyond America, not surprisingly there are some folks in Ireland who are strongly opposed to ESC and just as forcefully pushing the use of adult stem cells (see billboard above: photo credit Stephen Sullivan).
There are also a number of newspaper and Internet articles popping up spreading propaganda about stem cells in Ireland. A good example is this piece promoting the myth that adult stem cell therapies can be used to treat 70 conditions (much like that road sign).
While the ASFI was just recently launched, an older and arguably more concerning organization in Ireland is called Youth Defence, a militant pro-life organization that harasses individual stem cell researchers and spreads misinformation that interferes with public education. Youth Defence, an offshoot of the pro-life Life Institute, just put out this propaganda-like piece.
Dr. Stephen Sullivan, Director of the Irish Stem Cell Foundation (a member of the International Consortium of Stem Cell Networks and most often in agreement with the top stem cell organization in the world, the International Society for Stem Cell Research or ISSCR), is on the front lines of this stem cell battle.
Dr. Sullivan told me:
Our stem cell organisations need to do more to give the patient and care givers a better distinction between an experimental protocol and a stem cell treatment that has passed clinical trial as there is a world of difference in terms of the risk/benefit ratio.
It appears many of the same issues roiling the stem cell field in America are manifest in Ireland as well.
The claim in Ireland by the sellers of adult stem cell that 70 diseases can be treated by adult stem cells resonates here the U.S. because many adult stem cell sellers make similar claims. Here many of these folks are making such claims with the goal of making money either by directly selling the treatments to patients or by acting as facilitators who direct patients to dubious clinics. It is unclear if that is the case in Ireland.
Irish reporter Mitchell asked Professor Timothy O’Brien, director of the organization Remedi, the Galway-based research centre focused on the application of stem cells in treatment, about the 70 treatments claim. Her article reads:
Professor Timothy O’Brien, director of Remedi, said there were “very few” diseases that could be treated clinically using cord blood. He advised this newspaper to contact the International Society for Stem Cell Research (ISSCR) for the most up-to-date information on cord blood…..Interestingly, O’Brien’s colleague, Remedi’s scientific director, Professor Frank Barry, sits on the board of the new foundation…. Barry baulked at claims that some 70 diseases could be treated using stem cells.
The Mitchell article continues:
“Like all countries in Europe, Ireland must look to the future to protect the population and be ready for new treatments. We cannot simply look back and say: ‘I wish we had prepared for that’….
Dr. Sullivan summed it up as follows:
People intuitively realize that if you can't yet treat type 2 diabetes yet with stem cells in California, you can't in Ireland either. A key thing to remember too is the more stem cell researchers collaborate on the education front, the more time is freed up to push the science forward in the laboratory. You can look at it as one of the good things about the world-wide recession, due to limited resources people have to work together and work more effectively for the common good.
Mitchell ends her article with the following thought:
There is a need for open debate on stem cells. For some, the advances already being made are proof enough that cord blood banking is worth the price. But parents deserve a clearer understanding of what it can – or cannot – be used for at this stage.
My take on all this?
The Irish Stem Cell Foundation needs our support in the brewing conflict in Ireland. Update. ASFI has emailed me subsequently to the original publication of this blog post to clarify their mission, which they state as:
ASFI was set up to promote accurate information and national awareness on adult stem cell research and therapies worldwide.
I hope to learn more about ASFI in the coming weeks and engage in a productive, respectful dialogue with them.
More broadly those of us internationally promoting research into future safe and effective stem cell treatments need to stick together in our efforts to advance our cause, help patients, and educate the public.
The reason grant writing wont work is you dont have evidence and solid scientific grounds for your claims.
Thankfully that may be true, and a stop gap for the nefarious who would seek the backdoor during or after the money grab. However it’s not the reason why legitimate phase 1 studies hit a grant writing wall. More often than not, funding the man hours to write the grant paper, additional ongoing funded studies ect.. Provide a huge time challenge to the research lab. I think Paul would be able to speak on this more thoroughly than I, so I would look for his response on this point.
@Dara
I’m glad we agree on the parameters.
The true root of exploitation in the cord blood/adult stem cell industry comes from those (FRC) with a political agenda that twist responsible studies research statistics and tout it as a Cure All. From that feed the scammers and the snake oil boys who find lots of online material to try to make themselves “appear” legitimate and take advantage of those in desperate need.
Cord blood banking is a business and a competitive one at that. It would be naive to say that as such, they are not allowed to operate under a business model that allows them to achieve their projected bottom line.
Arguments by OB/Gyn and other medical societies saying that the little lady is just too emotional to handle the banking issue/decision process is insulting at best. If a parent makes a choice to bank that is their personal right and decision. The reality is at the end of the day, either you have it to be part of the ongoing studies, or you don’t. Just because not everyone cannot afford to bank is a very poor argument against the banking industry. By that reasoning, not everyone can afford healthcare either.
The grant writing and funding process is extremely complex, so saying to Dr.’s “just do it” is not a reality. There are many ongoing legitimate studies (these are also exploited by the FRC and snake oil) and unnecessarily duplicating studies or replicating ARM’s would be irresponsible. The legitimate scientific community is not to blame for the exploitation and have precious little time to hold the hand of the consumer that is responsible for their own research as they move through the decision making process.
For years I have done my best to educate others on this issue (all Pro Bono) and there is plenty of easily accessible, current and accurate information out there now because of that and many other similar efforts, Paul’s Blog here being one of them.
What I find disturbing is that patients, while I understand their motivation, run to the snake oil boys and spend lots of time raising money but never preform due diligence on the treatment to begin with. Then they are shocked when the only result is an empty wallet. The education efforts will continue as will exposing the snake oil clinics that seem to pop up every day. However sympathy for those that refuse to take advantage that information is wearing very thin.
From Friday’s Irish Medical Times
Vatican advisor backs adult stem cells
April 27, 2012 By Gary Culliton
Prof Colin McGuckin
Gary Culliton speaks with the Vatican’s advisor on stem cells about the use of umbilical cord blood as a stem-cell source for future treatments.
Claims of “insufficient evidence” in support of the practice of taking routine cord blood for stem cell retrieval are not accurate, according to Prof Colin McGuckin, President and Director of the Cell Therapy Research Institute, Lyon, France.
The Royal College of Obstetricians and Gynaecologists (RCOG) has stated in a guidance document that there is insufficient evidence to recommend directed commercial cord blood collection and stem-cell storage in low-risk families. However, speaking at the launch last week of the Adult Stem Cell Foundation of Ireland, Prof McGuckin — a director of the new foundation and the Vatican’s advisor on stem cells — said patients could now be treated with adult stem cells.
“The harvesting of and banking of cord blood are areas where there definitely is a deficit,” said Prof Frank Barry, Scientific Director of REMEDI at NUI Galway. “There is a problem with availability of cord blood banking. Freedom to bank cord blood is not an option for most people still. The research and technology infrastructure for stem cells is strong. There is development of clinical trials. There is not access to treatment for patients as yet, but cord blood presents a potential therapeutic opportunity which is growing,” said Prof Barry.
Legislative issues
There are significant legislative issues in regard to embryonic stem cells in this country. In terms of their clinical use, adult stem cells are to the fore, compared to embryonic stem cells, the new Foundation pointed out. “Adult stem cells are available right now for several diseases,” said Prof McGuckin. “Unfortunately, these treatments don’t seem to be reaching Ireland. Sadly, if a patient has to go abroad to get therapy, the travel may not be good for them. We do not want people going to places where they might get a bogus stem cell therapy.
“There has been so much evidence in relation to the use of umbilical cord stem cells in the last 20 years that it cannot be ignored any more,” added the cell therapy expert. “Clinical trials that my group are developing — and other trials in the US — involve use of umbilical cords and placental stem cells to treat bone malformations, bone-related illness and brain-related illness. These show it is no longer the case that evidence is lacking.”
Non-blood diseases
Potential uses of umbilical cord blood and neonatal stem cells for other non-blood diseases were not examined in previous analyses of the area done here, Prof McGuckin stated. His work is focused on non-blood diseases: treatments for cerebral palsy, stroke, cleft palate and maxillofacial problems.
In Austria, amniotic membrane has been used to help people who have had car accidents, he explained. Patients who have been starved of oxygen at birth have also been helped, but that is not happening in the Republic, the professor added.
The argument can be made that Irish researchers are disadvantaged by the lack of access to embryonic stem cells, REMEDI’s Prof Barry said, adding however, that he was “not entirely convinced” on that point. “There is not enough evidence yet to say what value human embryonic stem cells will have. The database is much bigger for adult stem cells. There is no research in human embryonic stem cells in Ireland because of the legislative vacuum that exists. As a result, we have focused all our effort on adult stem cells and we have made a good deal of progress,” said Prof Barry.
“We cannot be blind to the fact that there is an enormous interest worldwide in embryonic stem cell therapy. There is a huge effort in this area outside Ireland. However, the clinical testing of embryonic stem cells is very minor compared to adult stem cells. We do not yet know what diseases will be treatable with embryonic stem cells.”
We agree so that this is not a discussion about adult vs embryonic stem cells. Good. The issue is telling the public you have treatments and patients when you are not a medical doctor and you are actually referring to experimental protocols. Why don’t the scientists involved write a few grants instead of telling the public they have treatments for cystic fibrosis and diabetes type 1?
A legitimate opportunity for a discussion on stem cell banking instead has become a public campaign to oversell the current clinical utility of cord blood as a cellular therapy.
Dara
I would like to make one thing clear. I was never arguing against blastocyst research. In fact I am very much in favor of both types of research moving forward and understand the current science and limitations of both. You seem to miss the point of the initial debate on cord blood that you started (that it had no value), by again copying and pasting articles by actual scientists (Smith, Neaves, Teitelbaum) that expose the 2006 mythical fallacies of Prentice the failed pathologist and Capitol Hill GOP protagonist. If this is the best you can do, the FRC needs to find someone else.
MYTH
Adult stem cells have been proven effective in treating more than 70 diseases.
FACT
While adult stem cell research holds much promise, blood stem cells offer the only proven adult stem cell therapies thus far. The claim that adult stem cells have been used to cure more than 70 diseases has been widely discredited. Opponents of embryonic stem cell research frequently make this claim, which originates from a list created by Dr. David A. Prentice, an employee of the Family Research Council who advises those who oppose embryonic stem cell research. Dr. Prentice often refers to sources that he says prove the value of adult/tissue stem cells as treatments for at least 65 diseases. However, these claims have been discredited in a scientific study by Shane Smith, William Neaves and Steven Teitelbaum published in the journal Science (“Adult stem cell treatments for diseases?,” July 13, 2006). They found that much of Dr. Prentice’s footnoted documentation was based on uncorroborated anecdotal reports and nonscientific sources. In fact, the scientists said, nine diseases have been proved to respond to treatment with adult/tissue stem cells and agree that this research should continue. To see the full list of illnesses and treatments published in Science, click this link:
http://www.sciencemag.org/content/suppl/2006/07/27/1129987.DC1/Smith.SOM.V2.pdf
“In a statement, Dr Irving Weissman, director of the world-renowned Institute of Stem Cell Biology and Regenerative Medicine at Stanford University in California, said such marketing from private outfits was “a real problem, as they do not try to tell the whole [story].
Weissman holds strong beliefs that stem cell transplants will be used to treat more diseases in the future, but he does not advise parents to bank privately because there is no guarantee when – if ever – that future will come.
It’s a business that has very little positive outcome for the people who do it,” Weissman said in a recent interview. “And to the extent that they claim cord blood can regenerate anything but blood, they’re wrong. It’s a practice of pressuring young people to pay a significant amount of money for private use . . . I think it’s not evidence-based.”
Copying and pasting out dated, inaccurate and long ago disproved opinion is not going to make your case Dara. Many hundreds of children have used autologous (their own cord blood), not only at Duke University Medical Center for ongoing studies (and showing very promising results) for neurological injury, but also in the treatment of their own malignant diseases around the world. If you spent more time looking at the readily available documented evidence, instead of rummaging about for something to back up your flat earth view, you would know this.
A physician has no more business telling a patient that they should not bank, any more than they have in telling a patient they don’t like the dress that they’re wearing. That decision is simply not any of their business any more than it is yours.
As for your most likely next falsehood regarding private banking depleting the public donor banks, there is no such evidence of this and in the civilized world market place, public and private banks long ago agreed that there is plenty of room for both. I’ve been at those tables in many parts of the world and know this to be a fact . So please Dara, brush up on your google skills and stop wasting your (and everyone elses’) time.
Also from Sunday Business Post:
“….parents who are considering banking their newborn’s umbilical cord blood should be aware that the blood has little use in clinical practice. Consultant haematologists Paul Browne and Owen Smith said the vast majority of cord stem cells used in the treatment of illnesses came from third parties.
Browne, who is head of the national bone marrow and stem cell programme, said this was because private cords often had the same genetic disease as the child from whom the cord blood was obtained, rendering them useless. He said parents should be aware of this before spending money on private cord banking.
Browne….rejected the suggestion that Irish patients were missing out on new treatments because we did not have such a bloodbank.
He said Ireland had reciprocal agreements and that cord blood transplants already took place here.”
“Dr Sam Coulter-Smith, master at the Rotunda Hospital in Dublin, said
it was very difficult for the general public to get a clear picture of
what stem cells therapies are readily available today. He expressed
concern at the hype that surrounds stem cells in general, when they
still have very limited use in clinical practice.
The companies touting for business are commercial ventures. They are
often pushing an open door with parents. We looked at the evidence and
got advice and came to the view that there was no justification for
harvesting cord blood, except for cases where there was a history of
congenital disorders or leukemias. That evidence has not changed,” he
said.
Darla – your copy response is just that and nothing more. You have no grasp of science in this field. http://www.viacord.com/Collateral/Documents/Common/175Transplants011510.pdf
Well that billboard is quite interesting considering the fact that:
A) Ireland has no cord blood public collection in place for the global donor network.
B) According to my conversations with Michael Doherty of the key Cord Blood private bank in Ireland the medical system fights against and refuses to bank for any birthing mother that shows up with a kit and is not it the “High paid wing of the the unit”.
The right wing radical US Protestant FRC (Prentice, Perkins et.al.) tunnel vision being exported to Dublin is indicative of a dying beast that lacks in every sense