With the bewildering amount of news about stem cells, how do we tell the difference between hype and hope?
Although the words “hype” and “hope” only differ by one letter, sometimes it is hard to tell them apart in real life, but of course they are very different things.
So how do we know when something is being blown way out of proportion (hype) and distinguish that from a very exciting advance in the field that almost seems like sci-fi it is so cool (hope)?
Here is my take on it.
1) Stem cell scientists and patient advocates are extremely excited and energized about the future potential of stem cells. Verdict = HOPE.
Stem cell scientists not surprisingly spend a great deal of time thinking about stem cells and their power to do good as new medicines. Given the social and political complexities surrounding stem cells, I think those who favor stem cell research have to aggressively advocate for the research including for funding and for political goals. I do not believe that this assertiveness, which perhaps scientists are trained to avoid, is a form of hype.
2) Many stem cell therapies that really work are available now. Verdict = HYPE.
Stem cells do have a huge amount of potential, but I think it is important to caution people that events in the stem cell field really are measured in years and some would argue decades. Some patience is required. So one clue about telling when something is hype is when folks say that there are all kinds of stem cell therapies available right now, today, if only you can give them enough money. There are a lot of stem cell clinical trials going on and many more will be joining the list soon, and that’s a great thing, but right now there just are not a lot of FDA approved stem cell treatments out there, meaning ones that are proven safe and effective. Bone marrow/hematopoietic stem cell transplantation comes to mind as the primary example. If you travel to a foreign country or get a non-FDA approved stem cell treatment here in the U.S., you are putting yourself or your loved one at great risk not to mention the financial loss.
3) Adult stem cells are the only way to go. Verdict = HYPE.
Some folks have declared war on anything that does not fit their definition of “adult stem cells”, calling everything else immoral or downright evil. They also go to extreme lengths to argue that adult stem cells are proven to be able to treat almost anything ranging from warts to hair loss to more serious conditions such as spinal cord injury. There is no doubt that adult stem cells have great potential, but they cannot do everything and for a majority of people in the U.S. and in the World, embryonic stem cell research is ethical.
4) We can make a stem cell-based treatment that is completely safe. Verdict = HYPE.
The word “safe” is a dangerous one paradoxically because it implies so much. There is no such thing as any medical treatment that is proven “safe”. Any drug, which stem cells are by the FDA’s definition, that actually is active in the body (meaning it does something positive) will have side effects or “off target effects”. This is true for simple drugs, including over the counter things like aspirin, antacids, etc. as well as prescription drugs and medical procedures. What this means is that stem cell therapies cannot be 100% safe. By definition anything to does any good as a medicine or medical procedure must also have some potential to do bad things too. It all comes down to risk and reward. When I see stem cell treatments such as autologous stem cell transplants defined by those pitching them as “completely safe” because you are simply receiving a transplant of your own stem cells, I cringe. It is so untrue. Perhaps such treatments will not have side effects in most patients, but there are no guarantees.
5.) Geron and Advanced Cell Technology (ACT) have together 3 clinical trials underway based on human ES cell technology that offer some reasonable chance of success over a period of years. Verdict = HOPE. These trials are very real. They are truly revolutionary and like any new technology, there is some risk here, but you have to start somewhere. The trials are based on a lot of pre-clinical data. We don’t know if they will prove safe, which is the first step, and of course we do not know if they will be effective. The whole point of clinical trials to figure this stuff out, which is exactly why all those non-FDA approved stem cell tourism treatments out there are so dangerous. In contrast, behind ACT and Geron are loads of real, amazing scientists who have dedicated good chunks of their lives to this research.
6.) Stem cell researchers studying ES cells are just in it for the money. Verdict = HYPE. Every time I see this meme chanted by the anti-ES cell research crowd, I shake my head. It is downright sad and a totally unjustified accusation. The researchers I know who work on stem cells including ES cells are some of the most moral, wonderful human beings you will ever meet. Their goal is not to get rich, but to help people and pursue their passion for science.
Joost undergoes experimental treatment: Report
Former Springbok rugby player Joost van der Westhuizen is reported to have undergone experimental stem cell treatment for a fatal motor neuron disease (MND).
Van der Westhuizen’s neurologist Dr Jody Pearl told The Star that the treatment was safe, but there was no guarantee it would have any real benefit.
“We don’t know if we’ll be able to help with the MND… (but) therapy is the most promising treatment we have to date in any kind of degenerative condition,” she said.
http://www.timeslive.co.za/sport/rugby/2011/08/25/joost-undergoes-experimental-treatment-report
Joost undergoes stem cell therapy
Van der Westhuizen was diagnosed with ALS, a form of Motor Neuron Disease (MND), over two months ago. ALS is unfortunately a life-threatening neurodegenerative condition with an 80% mortality rate over a period of two to five years.
According to his Specialist Neurologist, Dr Jody Pearl, Van der Westhuizen’s diagnosis of ALS was confirmed at Cleveland Clinic’s Neuromuscular Unit in Ohio, United States, in July 2011, by one of the world’s leading experts in this condition.
Pearl said: “At this point treatment options are limited and essentially restricted to palliative and supportive therapy. Therefore Joost decided, with the support of his doctors and South African Rugby Legends Association President, Gavin Varejes, to opt for stem cell treatment.”
The aim of the therapy is to regenerate and repair damaged muscle tissue and hopefully delay further degeneration of his muscle function.
http://www.health24.com/news/Brain_Neurological/1-896,65884.asp
Clinical trials using adult stem cells to treat MS (video)
“There are lots of questions,” said Miller, who later today will take part in a panel discussion about the neurological applications of adult stem cells. The panel is part of the three-day MSC 2011 conference taking place in downtown Cleveland. Nearly 300 researchers from across the United States and more than a dozen countries are attending the conference, which ends on Wednesday.
“If this is really going to work, it’s going to be spectacular,” he said. “We don’t understand how it’s working, even in the animal models. We know [the MSCs are] driving myelin repair, but we don’t know all the molecules involved, all the cells involved.
“I’m hugely excited,” Miller said. “How could you not be?”
http://www.cleveland.com/healthfit/index.ssf/2011/08/cleveland_clinic_uh_and_cwru_c.html
This was a wonderful and well thought out article. I am one of the patients that received 1 million stem cells in my spine as as part of Neuralstem’s ALS stemcell trial at Emory. The study is primarily about safety and is obviously closely monitored by a safety review board and the FDA. That being said they still do collect and record efficacy data. There are numerous inherent risks, including taking immune suppressing drugs post surgery for the remainder of your life. That being said there is much HOPE that goes along with the prospects of utilizing stem cells in so many medical conditions.
The key is people must understand that as of yet there is no miracle cure. People that are going over seas to clinics for treatments that have not gone through strictly regulated safety trials are putting their lives at great risk with unknown consequences.
The HYPE of stem cells provides great HOPE for the future but first we must learn both the potential good and harm that these cells can do. Unfortunately doing it right also means doing it slowly. Hopefully good things come to those who wait conversly time is not on everyone’s side.
I for one am hoping that the hype proves to be more then just hope!