Every day we get a call from someone seeking help. Some are battling a life-threatening or life-changing disease. Others call on behalf of a friend or loved one. All are looking for the same thing; a treatment, better still a cure, to ease their suffering.
Almost every day we have to tell them the same thing; that the science is advancing but it’s not there yet. You can almost feel the disappointment, the sense of despair, on the other end of the line.
If it’s hard for us to share that news, imagine how much harder it is for them to hear it. Usually by the time they call us they have exhausted all the conventional therapies. In some cases they are not just running out of options, they are also running out of time.
Chasing hope
Sometimes people mention that they went to the website of a clinic that was offering treatments for their condition, claiming they had successfully treated people with that disease or disorder. This week I had three people mention the same clinic, here in the US, that was offering them “treatments” for multiple sclerosis, traumatic brain injury and chronic obstructive pulmonary disease (COPD). Three very different problems, but the same approach was used for each one.
It’s easy to see why people would be persuaded that clinics like this could help them. Their websites are slick and well produced. They promise to take excellent care of patients, often helping take care of travel plans and accommodation.
There’s just one problem. They never offer any scientific evidence on their website that the treatments they offer work. They have testimonials, quotes from happy, satisfied patients, but no clinical studies, no results from FDA-approved clinical trials. In fact, if you explore their sites you’ll usually find an FAQ section that says something to the effect of they are “not offering stem cell therapy as a cure for any condition, disease, or injury. No statements or implied treatments on this website have been evaluated or approved by the FDA. This website contains no medical advice.”
What a damning but revealing phrase that is.
Now, it may be that the therapies they are offering won’t physically endanger patients – though without a clinical trial it’s impossible to know that – but they can harm in other ways. Financially it can make a huge dent in someone’s wallet with many treatments costing $10,000 or more. And there is also the emotional impact of giving someone false hope, knowing that there was little, if any, chance the treatment would work.
Shining a light in shady areas
U.C. Davis stem cell researcher, CIRM grantee, and avid blogger Paul Knoepfler, highlighted this in a recent post for his blog “The Niche” when he wrote:
Paul Knoepfler
“Patients are increasingly being used as guinea pigs in the stem cell for-profit clinic world via what I call stem cell shot-in-the-dark procedures. The clinics have no logical basis for claiming that these treatments work and are safe.
As the number of stem cell clinics continues to grow in the US and more physicians add on unproven stem cell injections into their practices as a la carte options, far more patients are being subjected to risky, even reckless physician conduct.”
As if to prove how real the problem is, within hours of posting that blog Paul posted another one, this time highlighting how the FDA had sent a Warning Letter to the Irvine Stem Cell Treatment Center saying it had serious concerns about the way it operates and the treatments it offers.
Paul has written about these practices many times in the past, sometimes incurring the wrath of the clinic owners (and very pointed letters from their lawyers). It’s to his credit that he refuses to be intimidated and keeps highlighting the potential risks that unapproved therapies pose to patients.
Making progress
As stem cell science advances we are now able to tell some patients that yes, there are promising therapies, based on good scientific research, that are being tested in clinical trials.
There are not as many as we would like and none have yet been approved by the FDA for wider use. But those will come in time.
For now we have to continue to work hard to raise awareness about the need for solid scientific evidence before more people risk undergoing an unproven stem cell therapy.
And we have to continue taking calls from people desperate for help, and tell them they have to be patient, just a little longer.
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If you are considering a stem cell treatment, the International Society for Stem Cell Research had a terrific online resource, A Closer Look at Stem Cells. In particular, check out the Nine Things to Know about Stem Cell Treatments page.
The Stem Cellar 
I contacted a regenerative center like this in California, and it would cost $8990.00 for what I assume is a single treatment. They seemed more interested in the money than my condition of Maccular Degeneration.
Big warning sign. I hope the FDA has an approval soon for this eye treatment. Will you offer doctors who are approved so we can contact them?
Seven or so years ago, when I helped CIRM to produce a video warning of unscrupulous stem cell clinics, I thought that educating people about the problems would lessen the ability of these shysters to fool desperate people. I am sad to say that I was wrong- as legitimate therapies become clinically feasible, these charlatans are using the progress as a marketing tool for their own money making schemes. Is there another way to send these rats scurrying back into the dark?
You hit the nail right on the head Kevin. As Jeanne alluded to, it is frustrating to see this technology being exploited. Hopefully this message will impact at least one person.
Let me guess, you guys are all worried about “unscrupulous stem cell clinics”, while patients are worried about their health and limited time they have with diseases that have no FDA-approved cure and whose only cures are stem cells. Do you see the conflict? For example, Jeanne Loring says she helped produce video warnings seven years ago…..I want to ask Jeanne Loring what she has done in these seven years to use stem cells to treat patients and how much longer does Ms.Loring want to do endless research. Can Loring tell the public how much grant money in total did she receive in her lifetime and if she has developed any cures to show for it?? That way we all know who else is profiting from this stem cell research and treatment “shady areas”.
ALS advocate- please contact me offline- I’m happy to answer your questions. I think you can find my address since I use my name.
Kevin, I posted a response to Loring and you didn’t publish it. This is a huge disservice to patients’ voices if you are paid by taxpayers but your loyalties lie elsewhere to silence our genuine anguish. That said, here is my response to Loring:
Ms.Loring, you posted your comment here and I expect you to post your responses here as well, and not in a private setting away from public eye. That way patients/advocates and the wider audience will also look at your responses and participate in the discussion. You were bold enough to denigrate and characterize private clinics broadly as “shysters”, “charlatans”, schemers and “rats”. While this may be intentionally churlish, patients expect a more substantive argument and not just boorish language, which I suppose shills like Doug Sipp and Paul Knoeepflerr have taught you and others very well. If you call the private clinics as charlatans for promising and not delivering, where do you stand on the promise and deliver spectrum??
All those years while you guys were busy spending billions of dollars on buildings, meetings, conferences, networking, getting awards, influencing dumb regulators, and securing “forever research” grants, private clinics have developed and provided much needed treatments to patients with no hope at a time when patients were literally dropping like dead flies. In these seven years that you talk about, there are thousands of examples of patients who benefited from stem cell therapies offered by private clinics and these clinics did so despite facing existential threat from FDA shutdowns, lawsuits and government overreach. Now the same stem cell therapies offered by some of these clinics for all these years are being touted as pathbreaking and in clinical trials, such as Kurtzberg’s Autism trial, and adipose-derived stem cells for MS and ALS, as if this was the result of efforts by you guys in the academia. These private clinics took no grant money or the billions, but proved to be so ahead of you guys in their thought and in bringing treatments to patients which work wonderfully well. If these are who you call as “rats”, it is not unfair to call your efforts as “money making schemes”, which by the way run into multi-billions and the promised pathbreaking cures nowhere in sight. You are saying “legitimate therapies become feasible”, as if the types of treatment out there are a mere extension of the research progress you guys make. That is not true at all. Most of the therapies that private clinics offer and benefit patients are highly unconventional, out of the box and you guys have and continue to argue against for years.
In summary, as Fed Up said, you guys probably should focus your time in the lab because tax payers are paying your salaries and money to do just that, and not be too concerned about the treatment part, if you want to serve the patients and tax payers well.
This is one of the worst cases of patting each other on the back that I’ve come across. Let’s see we have Paul Knoepfler, Jeanne Loring, the ISSCR all coming together on this CIRM blog to tell patients how much they are helping them. I’m a patient and I know hundreds of other patients and frankly, we are really tired of all the help. Stick to your research, thank taxpayers everyday that they have given you a job and quit the mindless blogging. Stem cell therapy has done me a world of good. Had I listened to any of the conflicted “experts” here, I’d probably be dead by now.
Ms.Loring…lets have the response right here so public can understand your argument and see for themselves how much public money you have cornered over your career and if you have any intent of following through with the real cures that you have been promising for so many years now. You call the private clinics broadly as “shysters”, “charlatans”, schemers and “rats”, for treating patients. You ‘forever researchers’ do exactly the same thing….you guys publish studies that say they are game-changing…but the game remains the same…getting more grants and promotions and attending meetings and making videos….while patients are dropping like dead flies, literally. If charlatans sell false promise and dont deliver…you guys want to know where you stand on the promise and deliver spectrum??
Moreover, some of the treatments that are being currently given by those you call “shysters” are also being used by mainstream scientists in clinical trials (and touted as breakthrough!), such as the Duke Autism trial. So, either YOU think that patients and patient advocates are fools who cannot understand the game or your plough the line because you stand to gain. Please respond here, where you ventured to boldly and broadly characterize private clinics, including the ones that have put their entire business in danger to help patients truly recover, as charlatans and their efforts as “money making schemes” and let us compare that with YOUR “money making schemes”. Fair enough?
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Everything above is true from both sides. There are some shady clinics looking for thousands of dollars profit, there are many more researchers looking for billions of dollars to stay in business. Then there are clinics in the middle. Ethical clinics pursuing medical innovation with research funds coming only from their own pockets. From my case studies I have published a case series on migraine. The american migraine society kindly offered me seed funding of $50,000. I now have ethics committee approval for a double blinded randomised placebo controlled clinical trial which will start enrolling in March 2016.
The billions spent researching stem cells from embryos has not been wasted. We have learnt a lot about how stem cells work. Stromal cells are a mix of cells which include stem cells. They are proving more effective and safer than cultured stem cells. They are available now.
If there is to be a plea it is to change direction. Less money into embryonic stem cells and some money to research stromal cells. We do need to know how much or how little these cells will do. We all have life changing patient stories but they are still only anecdotal. To be able to predict patient response we need more funding for clinical trials.