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I am a 53 year old male who has had advanced osteoporosis since crushing my spine in a military aircraft ejection at age 23. Perhaps two or three people medically like me in the WORLD. ALL of my advanced bone growth and pain management drugs were developed in Europe. I also elected for a stem cell transplant at a renowned American hospital, the procedure has kept me out of a wheelchair. None of this was covered by my American Insurers, including TRICARE, the VA or Medicare. On my own dime.
I learned DECADES ago that American medicine is big Pharma profit driven and the institutional medicine provided by Federally owned hospitals such as the military and NIH are RATIONED.
Big pharma does indeed suppress research and alternative medicine in America, (e.g. cannabis).Keep this in the FOREFRONT of your mind as you work thru your chronic illness.
osteoporosis in not a disease of deficiency in calcium as the drug/media industrial complex would like us to continue to beleive. It IS, according to preventive medical doctors who are NOT involved with disease care, a disease of excess acidity from our animal,processed food diets that causes calcium to leech from the bones to balance acid/alkyline. The largest mammals on earth get their calcium from greens, grasses. Cows, horses, elephants, giraffes, NO issue with hip fractures, bone thinning. Why, absorbable calcium from greens. See anything by Dr. Neal Barnard, Dr. John McDougall, Dr. T. Colin Campbell, doctors who should be interviewed regularly on NPR, but sadly , are not...We've been had and our preventable diseases prove it.
With ObamaCare, which is going to cost the average family of 4 around $20,000 per year, big Pharma AND the politicians will decide which drugs are marketed and which are not.PLUS, how high your premiums and fines will be raised year after year.European health care is upon us.
"With ObamaCare, which is going to cost the average family of 4 around $20,000 per year"
how much would that cost under the current regime of private insurance, assuming of course that all 4 people would be eligible for coverage? i bet it would be just the same, if not more.
Mr. Bob, have you tried natural remedies, like Sam-e, vitamin D and magnesium, and Omega 3 fatty acids? These are kind of under the radar in US medical circles.
Great to be interviewed by NPR about my positive experience with the stem cell therapy I had at Celltex. I disagree with George Daley, it IS ready for human use now, especially for those out of time. I think it is interesting to look at his embryonic stem cell & IPS patents here http://www.patientsforstemcell...Perhaps the value of these patents are threatened by this therapy that is already helping sick people. These approaches require many more years of research since they are riskier than using your own adult stem cells, which have been proven safe in research. Dr Mark Freedman has written in The Journal of Multiple Sclerosis that the animal research demonstrating safety and efficacy has been exhaustive, and "several small pilot clinical trials in subjects with advanced MS have demonstrated that mesenchymal stem cell (MSC) administration is safe and provided an early signal of clinical effectiveness." It is important for people to understand this new science quickly, because the FDA has snatched it away from us. This therapy can help so many disorders, severe conditions like MS and Parkinson's, and a multitude of orthopedic problems. The reduction in hip and knee replacements alone could salvage Medicare's budget. I am glad Celltex has the determination to keep helping people, even if we have to travel farther. The published results of their trial will be the proof that can help bring this back to the USA.
Thank you for telling your story. I have a three year-old son who is severely disabled as a result of a birth-related brain injury. He is also in a wheelchair, and lacks many basic functions. I have met a few -- unfortunately, not many -- other families who have children with similar conditions who went to Germany for stem cell therapy. A cure-all? Of course not. But in the cases of all of the children, they were able to regain bladder/bowel control, if they were able to walk with adaptive equipment before the therapy, their gait became a little more steady, etc. I would love to take my son to Germany to get the same kind of therapy, but the price is inhibiting that.
The way I see, my son's condition can only get worse if I DON'T try stem cell therapy. Everything is worth a shot. I wholeheartedly agree humans are ready for this now.
Again, thank you for telling your story. All the best to you and your family.
ObamaCare, which will be fully implemented by next year, does not abide by experimental, unproven treatments.If it's new or hasn't been proven yet, it won't be paid for.Get used to it.
Name one private insurer that covers or covered experimental, unproven treatments before ObamaCare. Also, please cite the portion of the law that they can no longer do this.
Mrs. Wilkinson, My wife and I were recently introduced to and...astounded by what stem cell treatment can do. We live in Mexico and a cousin of my wife and her husband came through from Ohio on their way to Mexico City to get stem-cell treatment for the husband, Mark, an Iraq war vet paralyzed from the waist down by a mortar. He had been in a wheelchair for eight years and was seeking treatment 'just for the pain'. No miracles were offered by the doctor(who had been recommended by family and thoroughly vetted) and none were expected by this couple. After two weeks in Mexico City they came back through town and he was walking. No cane, no crutches, no limp. I know this sounds impossible and I wouldn't have believed it had I not witnessed it with my own eyes. It was still a shock to them and believe me, we had a hard time getting our mind around what we were seeing. I guess I offer this anecdotal "evidence" to you as a reminder to keep your hope alive. There is something to this stem-cell therapy. Best wishes to you in your quest for treatment.
"One of the doctors who refers patients is Celltex co-founder Sam Jones. Ferrenz says this is not a conflict and that Jones is one of many doctors who want their patients to undergo adult stem cell replacement. He is also a patient himself for his arthritis."
This is clearly a conflict of interest since Mr. Jones, Celltex co-founder, has financial interest in the company.
I agree with you, though I suspect that all Medical investigations for pharmaceuticals or devices are compromised to some degree or other. I have noted this at more detail in my separate submission. If the conditions of cell culture are unique, the issue of whether this is yet a product fully-realized or an investigation for application is another potential ethical 'rabbit hole'.
Thank you SammyJo for speaking up for CellTex patients. I am a current MS CellTex patient that was cut off mid treatment. (diagnosed 2004) Sam is speaking for a large group of patients who have all seen quality of life improvements, thanks to our adult stem cell treatment. As a patient community we believe our cells should have NEVER been labeled a drug in the 1st place. I'm referring to the 2006 Midnight language change that the FDA did with no input from the public( 21 CFR 1271) As patients we believe this to be a medical procedure between one doctor and one patient. Almost everything one reads in the press about this is OPINION from academics who have lots of book learnin', but are NOT practicing physicians. Thank you NPR for including a patient perspective. Our voices must be heard! Patients are the only ones that don't have a conflict of interest in the "bio drug tug o war"
The FDA has become an impediment to new medicine. Americans should not have to go to other countries for treatment. If someone has the money and wants this therapy the FDA is wrong to block them. I would like to see people start suing the FDA for the cost of having to fly to other countries for treatment.
George Daley is looking to make money of his patents. Julian Penrod is the village idiot. Sammy Jo Wilkinson is fighting for her life.
For more background on Celltex and decision making about stem cell treatments visit my lab's stem cell blog http://www.ipscell.com . The reality is that the treatments discussed are not scientifically validated as safe or effected. They are not legally licensed to be used in the U.S. We just don't know. Offering them in Mexico would not change these realities. As a patient myself as well as a stem cell scientist, I respect the fact that some patients face conditions that today's medicine cannot help, but these treatments, as Dr. Daley says rightly, are risky and may be worse than doing nothing.Paul KnoepflerAssociate ProfessorUC Davis School of Medicine.
Worse than doing nothing?
A person with a painful degenerative disease with no viable conventional treatment, like MS, and it's worse than doing nothing to try to help?
Go to Ms. Wilkinson and tell her that the treatment that was making her MS symptoms disappear was worse that doing nothing. Go ahead, I want to see you do it.
It's that kind of mentality that makes people distrust and loathe modern medicine. When viable treatments exist but are shelved because of bureaucratic indecisiveness, how doctors and bureaucrats can sit in comfortable offices talking theoretical ideals of ethics while they are in good health while people wither and die.
Attitudes like yours are why people don't trust doctors, because you aren't trying to heal people, you're just trying to CYA against lawsuits and maximize your profits.
I believe your lab funding is for induced pluripotent stem cells(iPSCs). From MS Wilkinsons comments she is running out of time and needs to use adult stem cells now. Perhaps when your research concludes 10-15 years from now you should attempt to grow a heart for yourself.
thanks, Paul. it is vitally important (no pun intended) that this information, such as yours, take precedent in this new field of study and therapy
Is the decision on stem cell technology religious, political, financial or medical? In our history, certain institutions have held back medical progress. Can we keep politics and religion out of science?
There shouldn't be any religion involved with these stem cells, since they come from abdominal fat. No fetuses or embryos are killed for them.
Fringe Medicine while unorthodox or even new, as-yet-to-be-proven therapeutics by respected major pharmaceutical houses always is likely to have some degree of self-vested interest. The companies have their own researchers investigate their own products. The researchers, even when dedicated to objective Science, are at least subconsciously beholding to the people who fund them. They may color the sentiments of conclusions, if not the design and execution of their research, perhaps unintendedly so. Recently the High-step study did have Abbott researchers definitively declare against proof in the case of Niaspan, a company product, though this is not so clearly stated much of the time.
The biggest problem with companies such as Celltex here however, is that they are accumulating their experience in anecdotal fashion, likely not having enough experience in any specific indication, and charging the patients for what is essentially flawed research. If Dr. Jones did get benefit from his company's therapy, what does that prove for its efficacy in Multiple Sclerosis. If their technique is proprietary, and much in this field is, they should substantiate this for any indication before charging for it. That might increase the bill, but Abbott and the legitimate firms do this with all their products before release, even offering medical care cost to study subjects. This does not mean that the practice noted at the top is not in itself ethically-flawed and does not excuse the hopefully-infrequent compromised decisions and even dishonesty seen in the past with Merck's Vioxx, DePuy's ASR hip prosthesis, Robbins' Dalcon Shield and other such problems.
Sammy Jo Wilkinson, take 18 minutes to watch this: http://www.youtube.com/watc... I have no stake whatsoever in this, but have been deeply moved by this woman's recovery, and the science behind it.
Yes, everybody should be on the paleolithic diet that Dr Terry Wahl's is teaching, not just those of us with MS. This is the way humans were meant to eat.
The apparent confusion regarding the scientific process that is demonstrated by some of the posters here is troubling, though not surprising. The FDA is trying to do its job of protecting the public from fraudulent treatments. One anecdote is utterly meaningless when trying to determine the efficacy of a new medical intervention. Let stem cell therapies prove themselves in large, well-controlled clinical trials. This is the ONLY way to determine what works and what doesn't work. We'd all like the promise of stem-cells to come to fruition sooner than later, but we must be patient. Good science takes time my friends!
Unfortunately, patients have learned the hard way not to trust most doctors, the FDA, or the medical system as it is today. These patients should be able to decide what they do with their bodies. It really is nobody else's business. Besides, I guarantee you that all of these patients are aware that stem cells might not work. They are also aware that there could be terrible side effects. They are willing to take the risk.
Let's not forget that the MS drugs are a total joke... a joke with dangerous side effects. Just look up Tysabri's death rate! Not only that the neurologists practice Mengele medicine and the government is swayed by business interests as FDA employees network their way into powerful positions with drug companies. The idea that they are working on behalf of the patients is delusional. They are doing what everybody does: The are looking out for themselves.
doctors are good people. now, any doctor who takes anything from a pharma company, other than maybe free samples at the office, is a bad doctor and a shill.
"The FDA is trying to do its job of protecting the public from fraudulent treatments. "
kind o like how the EPA is "trying" to protect us from the hundreds, possibly thousands, of new chemical compounds that are invented every year? when they can only examine, say, 10-15? how exactly do you prove something is dangerous to humans until you've exposed a few thousands humans to it for many years?
It's called evidence-based medicine. If you have evidence that can withstand scientific scrutiny, present it. Anecdotal cases, no matter how emotionally moving, are not evidence. Everyone has an uncle who knows a guy who has a brother-in-law in Scranton that was cured by alternative medicine. Big Pharma does not wear a white hat but name an industry that does. The US spends billions of dollars annually on dietary supplements and alternative care that has little documented value other than placebo effect. You local health food store can cure everything but ignorance.
Many statements made in the interview by experts like George Daley, or Paul Knoepfler's comment that "the treatments discussed are not scientifically validated as safe or effected" are not factual. Please subscribe to the blog at patientsforstemcells.org if you want to see the facts that patients are discovering about thess conflicts of interest. Reporters need to ask them to disclose their conflicts when using them as sources.
This may cause this not to be printed or to be removed, but this very article utilizes a common tecnhique of the liar, the "non validated universal".
The article demonstrates from the start a sympathetic attitude toward stem cell treatment. It seems part of the program to depict patients as needing treatment, to represent stem cell therapy as being on the cusp of being ended, and to allow the pigeons to draw the unproved connection that stem cells will necessarily cure the patients.
The key this article employs is the story of SammyJo Wilkinson. It talks about her diagnosed "ailment", the results purportedly gained from stem cells and depicting her as a victim because the lab where she supposedly receives treament.
And it talks about no one else!
It makes Ms. Wilkinson the universal poster child, not only indicating her plight but, also, suggesting, without once saying it, that she is representative of all the cases that have received stem cell treatment! In fact, many have received such treatment already! And, yet, Ms. Wilkinson, with her less than 44% success rate, is represented as a characteristic case! If it didn't work for 999 patients, and did work for only one, making only that one success story's case history avaiable would be to unspokenly be presenting them as "typical"! To suggest that every patient was a success, without ever once saying it, and, like all good swindlers, leaving it up to the "pigeon" to scam themselves into thinking it's always successful! And, note, how that 11 symptoms out of 25 are played up! That's only 44% success! Punxsutawney Phil has a 39% success rate and "science" calls him a fraud!
The vcery fact that only one patient, with a less than 50% success rate, can be dredged up to try to connivingly promote support for stem cell research indicates that the entire program is a fraud.
I just listened to George Daley say my improvements are likely the placebo effect. Yes, over 10 months 11 symptoms completely resolved, when nothing else had ever made a difference. For example I've had 18 years of non-stop constipation, movements only twice a week; now I am regular every day. Urinary urgency progressed over the years to incontinence, so I couldn't even leave the house; now I am dry. I challenge Dr. Daley to present evidence that either of these conditions could be affected by placebo. Everybody with MS knows how hard it is to treat these conditions. I talked about it in the interview, maybe it wasn't included because it's embarrassing, but I'm happy to blush if it will help get the truth out there that the adult stem cell therapy I had worked.
Bee sting therapy also works on some MS patients. We are not the same, the treatments are not going to be the same. Does that mean that this person shouldn't be treated with something that is showing results for her because it doesn't show results for 90% plus of the population?
Julian - There are millions of patients who are being denied their basic civil rights because of the over reach of the FDA. Ms. Wilkinson is representative of these patients and I thank her for telling her story. I have not had treatment at Celltex. I do not have MS, but I do have a progressive terminal disease. I was fortunate to have had stem cell treatment last year that has given me a much improved quality of life that no other conventional medical treatment was able to do. Ms. Wilkinson was not "dredged" up as you claim. Instead, she is speaking up on behalf of patients everywhere. There are thousands and thousands of patients who have had an improved quality of life after having adult stem cell therapy. The interview would have lasted for months if all who have benefited from adult stem cell therapy had been interviewed. I am not claiming a cure, nor is Ms. Wilkinson. Celltex did not say she would be cured, nor did the clinic where I got treatment. For those of us without decades of time to wait, with no other options, we ask only that we be able to access our own stem cells if we wish and have them administered by a qualified physician. Your comments indicate to me that you are simply out of touch with the reality of the situation that terminal and chronically ill patients face. I owe my life to stem cell therapy. Your comments are completely without merit. Do you know how important it is to achieve even a small milestone such as regaining control over one's bladder? Evidently not. How about patients who could not even walk a few feet and were short of breath who are now climbing stairs with little or no effort? Quality of life is so important. Unless you have totally lost it, you will never understand. Kudos to Ms. Wilkinson for her candidness. This fight for our civil rights has just begun. Thank you to NPR for the interview and to Susan Berfield who brought the plight of patients to light.
You clearly have never suffered from a chronic condition and have no idea how this so-called "non validated universal" has suffered in her lifetime and how that suffering is THE universal experience of ALL people that live with chronic conditions. You think that by pointing out that she is the only patient interviewed that this somehow undermines the validity of this story and, in effect, mesenchymal stem cell treatment. Did it ever occur to you that perhaps the patients of Celltex respect SammyJo enough to want her to represent them? Did it occur to you that perhaps the statement by Governor Perry counts as another patient's experience? Did it also occur to you that there isn't enough time for this radio spot to accommodate the stories of more patients? I guess not.
Another thing that you made a big point about is SammyJo's supposed "less than 44% success rate." Did it occur to you with your assumed great wealth of knowledge that 44% is a HUGE improvement for someone suffering from Multiple Sclerosis? Did it occur to you that not all symptoms have equal weight? For example, the renewed ability to stand upright without falling may have much greater weight to someone with MS than, say, the ability to deliver superficial arguments? Did it occur to you that the new ability to stay awake all day or even have a regular bowel movement makes a MASSIVE difference to an MS patient? Apparently not. Your statistics obviously give the same weight to every improvement, which is incredibly naive.
The FDA publicly admits that errors will be made, that there's no way to totally avoid them.
However, they've never made a secret of the fact that when errors are made, they lean toward making type 2 errors, errors of omission, over type 1 errors, errors of commission. After all, that accords with their medical oath, "First of all, do no harm."
Making type 1 errors would put them directly in the chain of tort liability whereas making type 2 errors wouldn't result in any harm that wouldn't have resulted even without their participation. It's a liability issue.
But strangely, that doesn't satisfy a public that always wants to blame some externality for their personal ills regardless. Every beggar on the street who is ignored by passersby thinks people are actively harming him by not giving him what he wants and fervently believes he deserves. Every welfare recipient believes they have a natural human right to divert the attentions of the whole of society to fulfilling their self-assumed personal needs. They just can't accept the fact that 99.999999% of the humans on this planet, or even a country, have no interest whatsoever in their personal welfare, that we're all just a single meaningless statistic in a vast ocean of statistics. Our personal survival has meaning and impact among only a very, very limited circle of friends and family in our personal communities of our own making. The rest wouldn't even notice our demise since they couldn't know of our existence in the first place.
Hold your small circle of friends and family close, folks. But don't try to extend it beyond its natural carrying capacity. That will only result in a backlash of resentment. Don't try to place your personal dependencies on a huge impersonal government.
Great, the FDA puts a halt on stem cell research, but allows the production of GMO Salmon. It only becomes more transparent who's in the FDA's back pocket...NOT THE AMERICAN PEOPLE NOR OUR WELLNESS AND HEALTH.
Stem Cell Revolution: An Interview With Gary Rabin, Chairman And CEO Of Advanced Cell Technology this is a quote, from an article dated July 31, 2012 regarding MSCs and Multiple Sclerosis
Advanced Cell Technology (ACTC.OB) is a biotechnology company focused on the development and commercialization of human embryonic and adult stem cell technology in the field of regenerative medicine.
Gary - Let me give you one example. We have done this experiment in autoimmune encephalitis in mice. It's a mouse model for Multiple Sclerosis where you inject a specific kind of protein into the mice. Basically what happens is in 10 to 14 days you get complete front limb paralysis and partial hind limb paralysis. On a scale from 1 to 5 to the degrees of paralysis these animals get to about a 3.5. There currently is a drug on the market call Copaxone by Teva Pharmaceutical (TEVA). This year Copaxone will be a $3.8 billion drug. Copaxone gets the mice down to a 1.5 on the autoimmune encephalitis scale. Adult stem cell-generated MSCs get the number down from a 3.5 to 3.25. Our MSCs get it down to 0.5, so we are a full point better on the animal scale than Copaxone which a $3.8 billion drug. So how quickly are we working on getting these things into limelight visibility? The answer is as quickly as we can.
Obviously we have to make sure we maintain focus on our macular degeneration programs. We cannot drop the ball there. Until we have a big slug of capital come in, we have to be careful how we fund this. We are considering partnering programs in some of these autoimmune diseases to go after some indications that could help fund some of this stuff. It would be foolhardy for us to take our eye off the ball of the RPE program when you look at the unbelievable results that we have had. We are balancing our excitement for this product with the limitations of human and financial resources. Keep your eye on this space as we have lots of really big indications that we can go after.
I wonder if the medical establishment in China pays for rhino horn. Has it ever been scientifically tested? A lot of folks there seem to swear by its medical effectiveness for a whole range of ailments. Is it covered by their socialized medical plans?
Acupuncture seems to have been accepted even by certain licensed medical practitioners here.
There was a segment on BBC radio a week or so ago about all the voodoo medical practitioners proliferating in London now among certain ethnic/religious groups. They interviewed people on both sides of the questions concerning the efficacy of these "treatments" and whether they should be allowed.
I was reminded of this when I read the article here this morning on placebos. Makes me wonder how far a government should go to "protect" people from the potential results of their own decisions.
When personal freedom and scientific reasoning collide, which should win? And who should bear the costs in an integrated society?
I am very disappointed in the fact that the reporter did not disclose the financial interests of Daley or other CellTex naysayers. The financial interests of Stanley Jones were focused on, but not Daley. (I don't think that it is a big deal that Jones referred patients, because those patients were already looking for stem cells. He wasn't marketing or doing outreach on the services of CellTex. Instead, he was acting as a resource so the patients could get what they needed. As a person that has suffered from many health issues myself, I don't see anything wrong with that. I am grateful he referred SammyJo and the other people that have had benefits from treatment.
ObamaCare kicks in 100% by this time next year.I hope you're all ready.Hold still........this is going to hurt.
If you have read the medical scientific literature, you also know that intensive plasmapheresis is a highly effective treatment. Plasmapheresis is the modern more effective form of bleeding. It removes the GABA (gamma amino butyric acid) from the blood stream without removing the red and white cells. ♪♫~~☼~~♫♪
Just to pre-empt some comments I expect about the Catholic Church: The Church is actually all gung-ho on adult stem cell therapy. It's embryonic stem cells that they object to. But the bishops and even the pope have lauded the potential to heal that comes from adult stem cells.
(Am I a Catholic Bishop? No I'm not, so if you want it from the horse's mouth, here is the source: http://www.usccb.org/issues...
The FDA is under orders to stop or severly curtail any treatment or test that will cost ObamaCare too much money.Every socialized medicine program in every country does the same thing.If a treatment has not already been proven effective in a huge majority of patients, it's scrapped.You wanted this. You voted for it. Now enjoy.
"No good deed goes unpunished."
And for that matter, neither does not doing what someone else considers a good deed.
Some people will sue you no matter which way you go. The only way to protect yourself from the capriciousness of people who refuse to take responsibility for themselves is to totally isolate yourself from them and conduct your affairs as if they don't exist.
But even then they'll try to hunt you down to make you responsible.
"But even then they'll try to hunt you down to make you responsible."Exactly as Obama is wanting the so called "rich" to be treated.
He wants to make the successful and productive responsible for those who aren't.
I have Multiple Sclerosis. I came down with it after spending a winter in near freezing temperatures continuously, no warm air at all.
I do very well on a diet of milk and a weekly, one hour sauna. But I must, must say the disorder is very political. So, if you try following this regimen you may get great, great hassle. ♪♫~~☼~~♫♪
I am curious about one thing... How is it that the FDA is trying to regulate a persons own cells as a drug? FDA - frequently deceiving Americans...
My friend is an RN who CURED herself of horrible arthritis with a vegan diet. Her sister was diagnosed with MS and was told she'd be on drugs all her life. BULL! She to, changed her diet and is happy and healthy on a full and healthy PLANT BASED life style. We have consumed our way to preventable diseases, and we can UNDO the damage by eliminating the causes...The FDA should never have apporved the processed, animal fat laden, carcinogenic "foods' we've been marketed to consume for the past few generations, each getting progressively sicker. Instead of beating the chests with fists that applaud having so many childrens hosptials that can care for children with horrific diseases, we should have remorse that our chemcial, animal based agriculture and toxic environment has resulted in such a legacy... Our own food system is a weapon of mass destruction.