Science is hard. Explaining complex science to non-scientists is SUPER hard. But explaining science to non-native English speakers presents a whole new set of challenges.
I would know. I’m a first-generation immigrant whose highly-educated parents arrived in their new home—the United States—a tad too late to become fluent in its native tongue. I’ve also had the unique experience of participating in a clinical trial using stem cells—a topic which my family still has trouble grasping.
I still remember the day of my accident, which left me paralyzed from the chest down. My mother came into my room to cheerfully tell me that there was “something” that would “help me walk” again. Those “something” were human embryonic stem cells. The “help me walk” part was doctors simply explaining the potential of the treatment. In her frazzled mind, she could hardly understand Farsi, much less English. Being told that I was a candidate to participate in a stem cell trial somehow translated into being cured.
And she kept looking for the magic bullet. Countless internet searches revealed all sorts of clinics and wellness centers that offered a cure to just about any disease imaginable. My mom wondered, “Were these the same stem cells from my daughter’s trial? Maybe they are even better since they are curing so many folks!”
I tried my best to explain but there was always something missing in translation. I found that troubling. The language barrier made it so difficult to make informed decisions. I couldn’t imagine being a non-native English speaker and learning about such a complicated matter in a language I hadn’t yet mastered.
After all, stem cells are a topic that concerns the people of the world, not just certain countries or certain people speaking only in certain languages.
Dr. Paul Knoepfler would know. And not just because the statement comes straight from him. Paul is a stem cell scientist at UC Davis (full disclosure, we have funded some of his work). His blog, The Niche, is one of the longest-running blogs about regenerative medicine and an especially great resource for those without a science background.
More importantly, in 2021 Dr. Knoepfler launched SCOPE, an outreach effort to make available on the internet a basic page of facts about stem cells in as many languages as possible. What started with “Stem Cells in Spanish” has quickly transformed into a stem cell white paper now available in 35 different languages!
Naturally, I wasted no time and sent the Farsi version to my parents and the French one to my francophone mother-in-law. And it isn’t just me who is finding this information useful. Dr. Knoepfler says, “SCOPE has been a big hit and as the number of languages has grown, the number of page views of my white paper ‘What are stem cells?’ in languages besides English has skyrocketed. For example, just our Stem Cells in Spanish page has received over 680,000 views as of the first half of 2021, while our Indonesian page has over 300,000 views and our Arabic page has a quarter of a million. We are getting readers from all over the world who appreciate reading about stem cells in their own languages.”
What started out as an effort by Google to crack down on predatory stem cell clinics advertising bogus therapies seems to be getting diluted. Now the concern is whether that will make it easier for these clinics to lure unsuspecting patients to pay good money for bad treatments?
A little background might help here. For years Google placed no restrictions on ads by clinics that claimed their stem cell “therapies” could cure or treat all manner of ailments. Then in September of 2019 Google changed its policy and announced it was going to restrict advertisements for stem cell clinics offering unproven, cellular and gene therapies.
This new policy was welcomed by people like Dr. Paul Knoepfler, a stem cell scientist at UC Davis and longtime critic of these clinics. In his blog, The Niche, he said it was great news:
“Google Ads for stem cell clinics have definitely driven hundreds if not thousands of customers to unproven stem cell clinics. It’s very likely that many of the patients who have ended up in the hospital due to bad outcomes from clinic injections first went to those firms because of Google ads. These ads and certain particularly risky clinics also are a real threat to the legitimate stem cell and gene therapy fields.”
Now the search-engine giant seems to be adjusting that policy. Google says that starting July 11 it will permit ads for stem cell therapies approved by the US Food and Drug Administration (FDA). That’s fine. Anything that has gone through the FDA’s rigorous approval process deserves to be allowed to advertise.
The real concern lies with another adjustment to the policy where Google says it will allow companies to post ads as long as they are “exclusively educational or informational in nature, regardless of regulatory approval status.” The problem is, Google doesn’t define what constitutes “educational or informational”. That leaves the door open for these clinics to say pretty much anything they want and claim it meets the new guidelines.
To highlight that point Gizmodo did a quick search on Google using the phrase “stem cells for neuropathy” and quickly came up with a series of ads that are offering “therapies” clearly not approved by the FDA. One ad claimed it was “FDA registered”, a meaningless phrase but one clearly designed to add an air of authenticity to whatever remedy they were peddling.
The intent behind Google’s change of policy is clearly good, to allow companies offering FDA-approved therapies to advertise. However, the outcome may not be quite so worthy, and might once again put patients at risk of being tricked into trying “therapies” that will almost certainly not do them any good, and might even put them in harm’s way.
I have a confession. Deep down I’m shallow. So when something I am part of is acknowledged as one of the best, I delight in it (my fellow bloggers Katie and Esteban also delight in it, I am just more shameless about letting everyone know.)
And that is just what happened with this blog, The Stem Cellar. We have been named as one of the “22 best biology and stem cell blogs of 2022”. And not just by anyone. We were honored by Dr. Paul Knoepfler, a stem cell scientist, avid blogger and all-round renaissance man (full disclosure, Paul is a recipient of CIRM funding but that has nothing to do with this award. Obviously.)
We are particularly honored to be on the list because Paul includes some heavy hitters including The Signals Blog, a site that he describes this way:
“This one from our friends in Canada is fantastic. They literally have dozens of authors, which is probably the most of any stem cell-related website, and their articles include many interesting angles. They post really often too. I might rank Signal and The Stem Cellar as tied for best stem cell blog in 2021.”
Another one of the 22 is David Jensen’s California Stem Cell report which is dedicated to covering the work of, you guessed it, CIRM. So, not only are we great bloggers, we are apparently great to blog about.
As a further demonstration of my modesty I wanted to point out that Paul regularly produces ‘best of’ lists, including his recent “50 influencers on stem cells on Twitter to follow” which we were also on.
If you are walking down the street on a dark night, being followed is not necessarily something you want. But if you are online, having someone follow you is almost always a positive thing. And when that person is Dr. Paul Knoepfler it’s most definitely a plus.
Paul is a stem cell scientist at UC Davis (full disclosure, we have funded some of his work). He’s also one of the longest-running and most active bloggers about regenerative medicine and an ever-present presence on Twitter. His blog is always a great read and, for those of us without a science background, easy to follow and understand.
Dr. Paul Knoepfler, UC Davis: Photo courtesy UC Davis
Paul says this does not necessarily mean the most influential in the field of research because many researchers – such as Nobel Prize winner Dr. Shinya Yamanaka – don’t use Twitter. He says in making the list he looked for a few key elements.
“I particularly appreciate those accounts that include a mix of info, news, and opinion with original content or opinions of their own too.
“I emphasized inclusion of those accounts who regularly tweet. Also, I aimed for a good mixture of accounts across the globe, not just in the U.S. I also included stem cell policy researchers and bioethicists.”
“I picked this list of 50… for 2022 based simply on my impressions of their influence or because they do interesting tweets and/or have a fresh perspective on things, not strictly based on metrics.”
Whatever the reason, we’re delighted, and honored to be on Paul’s list.
And if you would like to see why we made the ’50 to Follow list’, then follow us on Twitter
A search on Google using the term “stem cell blogs” quickly produces a host of sites offering treatments for everything from ankle, hip and knee problems, to Parkinson’s disease and asthma. Amazingly the therapies for those very different conditions all use the same kind of cells produced in the same way. It’s like magic. Sadly, it’s magic that is less hocus pocus and more bogus bogus.
The good news is there are blogs out there (besides us, of course) that do offer good, accurate, reliable information about stem cells. The people behind them are not in this to make a quick buck selling snake oil. They are in this to educate, inform, engage and enlighten people about what stem cells can, and cannot do.
This blog has just undergone a face lift and is now as colorful and easy to read as it is informative. It bills itself as the longest running stem cell blog around. It’s run by UC Davis stem cell biologist Dr. Paul Knoepfler – full disclosure, we have funded some of Paul’s work – and it’s a constant source of amazement to me how Paul manages to run a busy research lab and post regular updates on his blog.
The power of The Niche is that it’s easy for non-science folk – like me – to read and understand without having to do a deep dive into Google search or Wikipedia. It’s well written, informative and often very witty. If you are looking for a good website to check whether some news about stem cells is real or suspect, this is a great place to start.
This site is run by another old friend of CIRM’s, Don Reed. Don has written extensively about stem cell research in general, and CIRM in particular. His motivation to do this work is clear. Don says he’s not a doctor or scientist, he’s something much simpler:
“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!”
The power of Don’s writing is that he always tells human stories, real tales about real people. He makes everything he does accessible, memorable and often very funny. If I’m looking for ways to explain something complex and translate it into everyday English, I’ll often look at Don’s work, he knows how to talk to people about the science without having their eyes cloud over.
This is published by the International Society for Stem Cell Research (ISSCR), the leading professional organization for stem cell scientists. You might expect a blog from such a science-focused organization to be heavy going for the ordinary person, but you’d be wrong.
A Closer Look at Stem Cells is specifically designed for people who want to learn more about stem cells but don’t have the time to get a PhD. They have sections explaining what stem cells are, what they can and can’t do, even a glossary explaining different terms used in the field (I used to think the Islets of Langerhans were small islands off the coast of Germany till I went to this site).
One of the best, and most important, parts of the site is the section on clinical trials, helping people understand what’s involved in these trials and the kinds of things you need to consider before signing up for one.
Of course, the US doesn’t have a monopoly on stem cell research and that’s reflected in the next two choices. One is the Signals Blog from our friends to the north in Canada. This is an easy-to-read site that describes itself as the “Insiders perspective on the world of stem cells and regenerative medicine.” The ‘Categories ‘dropdown menu allows you to choose what you want to read, and it gives you lots of options from the latest news to a special section for patients, even a section on ethical and legal issues.
As you may have guessed from the title this is by our chums across the pond in Europe. They lay out their mission on page one saying they want to help people make sense of stem cells:
“As a network of scientists and academics, we provide independent, expert-reviewed information and road-tested educational resources on stem cells and their impact on society. We also work with people affected by conditions, educators, regulators, media, healthcare professionals and policymakers to foster engagement and develop material that meets their needs.”
True to their word they have great information on the latest research, broken down by different types of disease, different types of stem cell etc. And like CIRM they also have some great educational resources for teachers to use in the classroom.
For years CIRM and others in the stem cell community (hello Paul Knoepfler) have been warning people about the dangers of going to clinics offering unproven and unapproved stem cell therapies. Recently the drum beat of people and organizations coming out in support of that stand has grown louder and louder. Mainstream media – TV and print – have run articles about these predatory clinics. And now, Google has joined those ranks, announcing it will restrict ads promoting these clinics.
“We regularly review and revise our
advertising policies. Today, we’re announcing a new Healthcare and
medicines policy to prohibit advertising for unproven or experimental
medical techniques such as most stem cell therapy, cellular (non-stem) therapy,
and gene therapy.”
The president of the International Society for Stem Cell Research (ISSCR) Dr. Deepak Srivastava quickly issued a statement of support, saying:
“Google’s new policy banning
advertising for speculative medicines is a much-needed and welcome step to curb
the marketing of unscrupulous medical products such as unproven stem cell
therapies. While stem cells have great potential to help us understand and
treat a wide range of diseases, most stem cell interventions remain
experimental and should only be offered to patients through well-regulated
clinical trials. The premature marketing and commercialization of unproven stem
cell products threatens public health, their confidence in biomedical research,
and undermines the development of legitimate new therapies.”
Speaking of Deepak – we can use first
names here because we are not only great admirers of him as a physician but also
as a researcher, which is why we have funded
some of his research – he has just published a wonderfully well written
article criticizing these predatory clinics.
The article – in Scientific
American – is titled “Don’t Believe Everything You Hear About Stem Cells”
and rather than paraphrase his prose, I think it best if you read it yourself.
So, here it is.
Enjoy.
Don’t Believe Everything You Hear about Stem Cells
The science is progressing rapidly,but bad
actors have co-opted stem cells’ hope and promise by preying on unsuspecting
patients and their families
Stem cell science is moving forward
rapidly, with potential therapies to treat intractable human diseases on the
horizon.Clinical trials are now underway to test the safety
and effectiveness of stem cell–based treatments for blindness,spinal
cord injury,heart disease,Parkinson’s
disease, and more,some with early positive results.A
sense of urgency drives the scientific community, and there is tremendous hope
to finally cure diseases that, to date, have had no treatment.
But don’t believe everything you hear about stem cells. Advertisements and pseudo news articles promote stem cell treatments for everything from Alzheimer’s disease,autism and ALS, to cerebral palsy and other diseases.The claims simply aren’t true–they’re propagated by people wanting to make money off of a desperate and unsuspecting or unknowing public.Patients and their families can be misled by deceptive marketing from unqualified physicians who often don’t have appropriate medical credentials and offer no scientific evidence of their claims.In many cases, the cells being utilized are not even true stem cells.
Advertisements for stem cell treatments are showing up everywhere, with too-good-to-be-true
claims and often a testimonial or two meant to suggest legitimacy or efficacy.Beware of the following:
• Claims that stem
cell treatments can treat a wide range of diseases using a singular stem cell
type. This is unlikely to be true.
• Claims that stem
cells taken from one area of the body can be used to treat another, unrelated
area of the body. This is also unlikely to be true.
• Patient testimonials used to validate a
particular treatment, with no scientific evidence. This is a red flag.
• Claims that
evidence doesn’t yet exist because the clinic is running a patient-funded
trial. This is a red flag; clinical trials rarely require payment for
experimental treatment.
• Claims that the
trial is listed on ClinicalTrials.gov and is therefore NIH-approved. This may
not be true. The Web site is simply a listing; not all are legitimate trials.
• The bottom line:
Does the treatment sound too good to be true? If so, it probably is. Look for
concrete evidence that the treatment works and is safe.
Hundreds of clinics offer costly, unapproved and unproven stem cell
interventions, and patients may suffer physical and financial harm as a result.A Multi-Pronged Approach to Deal with
Bad Actors
The International Society for Stem Cell Research (ISSCR)has
long been concerned that bad actors have co-opted the hope and promise of stem
cell science to prey on unsuspecting patients and their families.
We read with sadness and disappointment the many stories of people trying unproven therapies and being harmed, including going blind from injections into the eyes or suffering from a spinal tumor after an injection of stem cells.Patients left financially strapped, with no physical improvement in their condition and no way to reclaim their losses, are an underreported and underappreciated aspect of these treatments.
Since late 2017, the Food and Drug Administration has stepped up its
regulatory enforcement of stem cell therapies and provided a framework
for regenerative medicine products that provides guidelines for work in
this space.The agency has alerted many clinics and centers
that they are not in compliance and has pledged to bring additional enforcement
action if needed.
A Multi-Pronged Approach to Deal with Bad Actors The International Society for Stem Cell Research (ISSCR) has long been concerned that bad actors have co-opted the hope and promise of stem cell science to prey on unsuspecting patients and their families.
We read with sadness and disappointment the many stories of people trying
unproven therapies and being harmed, including going
blind from injections into the eyesor suffering from a spinal
tumor after an injection of stem cells.Patients left
financially strapped, with no physical improvement in their condition and no
way to reclaim their losses, are an underreported and underappreciated aspect
of these treatments.
Since late 2017, the Food and Drug Administration has stepped up its
regulatory enforcement of stem cell therapies and provided a framework
for regenerative medicine products that provides guidelines for work in
this space.The agency has alerted many clinics and centers
that they are not in compliance and has pledged to bring additional enforcement
action if needed.
In recent weeks, a federal judge granted the FDA a permanent injunction
against U.S. Stem Cell, Inc. and U.S. Stem Cell Clinic, LLC for adulterating
and misbranding its cellular products and operating outside of regulatory
authority.We hope this will send a strong message to other
clinics misleading patients with unapproved and potentially harmful cell-based
products.
The Federal Trade Commission has also helped by identifying and curtailing
unsubstantiated medical claims in advertising by several clinics. Late in 2018
the FTC won a $3.3-million judgment against two California-based clinics for
deceptive health claims.
The Federal Trade Commission has also
helped by identifying and curtailing unsubstantiated medical claims in
advertising by several clinics. Late in 2018 the FTC won a $3.3-million
judgment against two California-based clinics for deceptive health claims.
These and other actions are needed to stem the tide of clinics offering
unproved therapies and the people who manage and operate them.
Improving Public Awareness
We’re hopeful that the FDA will help improve public awareness of these
issues and curb the abuses on ClinicalTrials.gov,a government-run Web site being misused by rogue clinics looking to
legitimize their treatments. They list pay-to-participate clinical trials on
the site, often without developing, registering or administering a real
clinical trial.
The ISSCR Web site A Closer
Look at Stem Cellsincludes patient-focused information
about stem cells,with information written and vetted by stem
cell scientists.The site includes how and where to report
adverse events and false marketing claims by stem cell clinics.I
encourage you to visit and learn about what is known and unknown about stem
cells and their potential for biomedicine.The views expressed are those of the
author(s) and are not necessarily those of Scientific American.
Cover of New Yorker article on “The Birth Tissue Profiteers”. Illustration by Ben Jones
When you have a great story to tell the best and most effective way to get it out to the widest audience is still the media, both traditional mainstream and new social media. Recently we have seen three great examples of how that can be done and, hopefully, the benefits that can come from it.
First, let’s go old
school. Earlier this month Caroline Chen wrote a wonderful
in-depth article about clinics that are cashing in on a gray area in stem
cell research. The piece, a collaboration between the New Yorker magazine and
ProPublica, focused on the use of amniotic stem cell treatments and the gap
between what the clinics who offer it are claiming it can do, and the reality.
Here’s one paragraph
profiling a Dr. David Greene, who runs a company providing amniotic fluid to
clinics. It’s a fine piece of writing showing how the people behind these
therapies blur the lines between fact and reality, not just about the cells but
also about themselves:
“Greene said that amniotic stem cells derive their healing power from an ability to develop into any kind of tissue, but he failed to mention that mainstream science does not support his claims. He also did not disclose that he lost his license to practice medicine in 2009, after surgeries he botched resulted in several deaths. Instead, he offered glowing statistics: amniotic stem cells could help the heart beat better, “on average by twenty per cent,” he said. “Over eighty-five per cent of patients benefit exceptionally from the treatment.”
Greene later
backpedals on that claim, saying:
“I don’t claim that this is a treatment. I don’t claim that it cures anything. I don’t claim that it’s a permanent fix. All I discuss is maybe, potentially, people can get some improvements from stem-cell care.”
CBS2 TV Chicago
This week CBS2
TV in Chicago did their own investigative story about how the number of local
clinics offering unproven and unapproved therapies is on the rise. Reporter Pam
Zekman showed how misleading newspaper ads brought in people desperate for
something, anything, to ease their arthritis pain.
She interviewed two
patients who went to one of those clinics, and ended up out of pocket, and out
of luck.
“They said they would regenerate the cartilage,” Patricia Korona recalled. She paid $4500 for injections in her knee, but the pain continued. Later X-rays were ordered by her orthopedic surgeon.
“He found bone on bone,” Korona said. “No cartilage grew, which tells me it failed; didn’t work.”
John Zapfel paid $14,000 for stem cell injections on each side of his neck and his shoulder. But an MRI taken by his current doctor showed no improvement.
“They ripped me off, and I was mad.” Zapfel said.
TV and print reports
like this are a great way to highlight the bogus claims made by many of these
clinics, and to shine a light on how they use hype to sell hope to people who
are in pain and looking for help.
At a time when
journalism seems to be increasingly under attack with accusations of “fake news”
it’s encouraging to see reporters like these taking the time and news outlets
devoting the resources to uncover shady practices and protect vulnerable
patients.
But the news isn’t
all bad, and the use of social media can help highlight the good news.
That’s what happened
yesterday in our latest CIRM
Facebook Live “Ask the Stem Cell Team” event. The event focused on the
future of stem cell research but also included a really thoughtful look at the
progress that’s been made over the last 10-15 years.
We had two great
guests, UC Davis stem cell researcher and one of the leading bloggers on the
field, Paul Knoepfler PhD; and David
Higgins, PhD, a scientist, member of the CIRM Board and a Patient Advocate
for Huntington’s Disease. They were able to highlight the challenges of the
early years of stem cell research, both globally and here at CIRM, and show how
the field has evolved at a remarkable rate in recent years.
Paul Knoepfler
Naturally the
subject of the “bogus clinics” came up – Paul has become a national expert on
these clinics and is quoted in the New Yorker article – as did the subject of
the frustration some people feel at what they consider to be the too-slow pace
of progress. As David Higgins noted, we all think it’s too slow, but we are not
going to race recklessly ahead in search of something that might heal if we
might also end up doing something that might kill.
David Higgins
A portion of the
discussion focused on funding and, in particular, what happens if CIRM is no
longer around to fund the most promising research in California. We are due to
run out of funding for new projects by the end of this year, and without a
re-infusion of funds we will be pretty much closing our doors by the end of
2020. Both Paul and David felt that could be disastrous for the field here in
California, depriving the most promising projects of support at a time when
they needed it most.
It’s probably not
too surprising that three people so closely connected to CIRM (Paul has
received funding from us in the past) would conclude that CIRM is needed for
stem cell research to not just survive but thrive in California.
A word of caution
before you watch: fashion conscious people may be appalled at how my pocket handkerchief
took on a life of its own.
When governments cut funding for scientific research the consequences can be swift, and painful. In Canada last week for example, the government of Ontario cut $5 million in annual funding for stem cell research, effectively ending a project developing a therapy to heal the damaged lungs of premature babies.
Here in the US the federal government is already placing restrictions on support for fetal tissue research and there is speculation embryonic stem cell research could be next. That’s why agencies like CIRM are so important. We don’t rely on a government giving us money every year. Instead, thanks to the voters of California, we have had a steady supply of funds to enable us to plan long-term and support multi-year projects.
But those funds
are due to run out soon. We anticipate funding our last new awards this year
and while we have enough money to continue supporting all the projects our
Board has already approved, we won’t be able to take on any new projects. That’s
bad news for the scientists and, ultimately, really bad for the patients who
are in need of new treatments for currently incurable diseases.
We are going to talk about that in two upcoming events.
UC San Diego Sanford Stem Cell Clinical Center
The first is a
patient advocate event at UC San Diego
on Tuesday, May 28th from 12.30pm to 1.30pm. It’s free, there is parking and snacks and
refreshments will be available.
This will
feature UC San Diego’s Dr. Catriona
Jamieson, CIRM’s President and CEO Dr.
Maria Millan and CIRM Board member and Patient Advocate for Parkinson’s
Disease, David Higgins PhD. The
three will talk about the exciting progress being made at UC San Diego and other
programs around California, but also the uncertain future and the impact that
could have for the field as a whole.
Here’s a link to an Eventbrite page that has more information about the event and also a link to allow you to RSVP ahead of time.
For all of you
who don’t live in the San Diego Area – or who do but can’t make it to the event
– we are holding a similar discussion online on a special Facebook Live: Ask the Stem Cell Team About the Future of Stem Cell
Research event on Thursday, May 30th
from noon till 1pm PDT.
This also
features Dr. Millan and Dr. Higgins, but it also features UC Davis stem cell
scientist, CIRM-grantee and renowned blogger Paul Knoepfler PhD.
Each brings
their own experience, expertise and perspective on the field and will discuss the
impact that a reduction in funding for stem cell research would have, not just
in the short term but in the long run.
Because we all
have a stake in what happens, both events – whether it’s in person or online – include
time for questions from you, the audience.
You can find our
Facebook Live: Ask the Stem Cell Team
About the Future of Stem Cell Research on our Facebook
page at noon on May 30th PDT
A doctor collects fat from a patient’s back as part of an experimental stem cell procedure in Beverly Hills, Calif. on Dec. 5, 2014. (Raquel Maria Dillon / Associated Press)
For several years now, we have been trying to raise awareness about the risks posed by clinics offering unproven or unapproved stem cell therapies. At times it felt as if we were yelling into the wind, that few people were listening. But that’s slowly changing. A growing number of TV stations and newspapers are picking up the message and warning their readers and viewers. It’s a warning that is getting national exposure.
Why are we concerned about these clinics? Well, they claim
their therapies, which usually involve the patient’s own fat or blood cells,
can cure everything from arthritis to Alzheimer’s. However, they offer no
scientific proof, have no studies to back up their claims and charge patients
thousands, sometimes tens of thousands of dollars.
“If it sounds too good to be true, it is. There is no good scientific evidence the pricey treatments work, and there is growing evidence that some are dangerous, causing blindness, tumors and paralysis. Medical associations, the federal government and even Consumer Reports have all issued stern warnings to patients about the clinics.”
In Denver, the
ABC TV station recently did an in-depth interview with a local doctor who is
trying to get Colorado state legislators to take legal action against stem cell
clinics making these kinds of unsupported claims.
“It’s
really out of control,” he told the station.
ABC7 did a series
of reports last year on the problem and that may be prompting this push for
a law warning consumers about the dangers posed by these unregulated treatments
which are advertised heavily online, on TV and in print.
In California
there is already one law on the books attempting to warn consumers about these
clinics. CIRM worked with State Senator Ed Hernandez to get that passed (you can read about that here)
and we are continuing to support even stronger measures.
And the NBC TV
station in San Diego recently reported on the rise of stem cell clinics around
the US, a story that was picked up by the networks and run on the NBC
Today Show.
One of the critical
elements in helping raise awareness about the issue has been the work done by Paul
Knoepfler and Leigh Turner in identifying how many of these clinics there are
around the US. Their report, published in the journal Cell
Stem Cell, was the first to show how big the problem is. It attracted
national attention and triggered many of the reports that followed.
It is clear
momentum is building and we hope to build on that even further. Obviously, the
best solution would be to have the Food and Drug Administration (FDA) crack
down on these clinics, and in some cases they have. But the FDA lacks the
manpower to tackle all of them.
That’s where the
role of the media is so important. By doing stories like these and raising
awareness about the risks these clinics pose they can hopefully help many
patients avoid treatments that will do little except make a dent in their
pocket.
Oh well, it’s going to be another year of disappointment for me. Not only did I fail to get any Nobel Prize (I figured my blogs might give me a shot at Literature after they gave it to Bob Dylan last year), but I didn’t get a MacArthur Genius Award. Now I find out I haven’t even made the short list for the Stem Cell Person of the Year.
The Stem Cell Person of the Year award is given by UC Davis researcher, avid blogger and CIRM Grantee Paul Knoepfler. (You can vote for the Stem Cell Person of the Year here). In his blog, The Niche, Paul lists the qualities he looks for:
“The Stem Cell Person of the Year Award is an honor I give out to the person in any given year who in my view has had the most positive impact in outside-the-box ways in the stem cell and regenerative medicine field. I’m looking for creative risk-takers.”
“It’s not about who you know, but what you do to help science, medicine, and other people.”
Paul invites people to nominate worthy individuals – this year there are 20 nominees – people vote on which one of the nominees they think should win, and then Paul makes the final decision. Well, it is his blog and he is putting up the $2,000 prize money himself.
This year’s nominees are nothing if not diverse, including
Anthony Atala, a pioneering researcher at Wake Forest Institute for Regenerative Medicine in North Carolina
Bao-Ngoc Nguyen, who helped create California’s groundbreaking new law targeting clinics which offer unproven stem cell therapies
Judy Roberson, a tireless patient advocate, and supporter of stem cell research for Huntington’s disease
The Stem Cellar 