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Asked by paolo-cipolla to Paralysis on 18 Jun 2014.
Question: I am interested in paralysis. During the BBC documentary and in others articles it is stated that a cure is a long way off (which is a very questinable statement) therefore the focus is on compensatory devices such as exoskeletons instead of a cure to get people back walking. At the same time I read here http://www.longitudeprize.org/challenge/paralysis regenerative medicine (i.e a biological cure) is taken in consideration. I understand the time frame to win the prize is 5 years, in my opinin that fits perfectly for assistive technology, but not for regenerative medicine as just a therapy that is almost ready now for a clinical trial has a chance to win. That does not attract researchers working on finding a cure to run for the prize. My question is can you name the experts you consulted with to frame the paralysis challenge?
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Paralysis Challenge answered on 18 Jun 2014:
You’re asking really important questions. As I am not involved in the crafting of the Prize, I do not know. I have a small amount of experience with incentive prizes, however, and I know that organizations that run them often have to focus on one element of a larger problem. It’s possible that the developers of the Longitude Prize were focused on restoring function, rather than a full cure. The SCI community wants both. People with SCI desperately want a cure – they want to be whole again, to be able to do all the things they could do before their injury. A cure could provide that, and it is important to continue to work towards a cure. However, some people find they can be more independent if they can have specific functions restored – such as hand grasp, bladder function, the ability to cough, the ability to maneuver without their wheelchair. I believe it is the intent of the Longitude Paralysis Prize to focus on technologies that can achieve these goals.
Comments
paolo-cipolla commented on :
Thank you for your answer. I am paraplegic since 2004. I don’t want more assistent devices, I would like to see money spent on finding a cure and I am not alone, for ex see this: http://curegirls.wordpress.com/2014/06/17/the-useless-kick-off-is-an-obstacle-for-the-real-cure/
and this: http://sci.rutgers.edu/forum/showthread.php?231314-Exoskeletons
Unfortunately compensatory devices take money away from cure oriented research, for ex:
http://kesslerfoundation.org/media/displaynews.php?id=375&title=Kessler+Foundation+Awarded+more+than+$1.2+Million+in+Grants+by+the+NJ+Commission+on+Spinal+Cord+Injury+Research#.Udw4azEX7_M.twitter
I also think is misleading to talk about “restoring function” when this happens with a “compensatory device”. I think it would be more correct to say “compensate” lost function when that happen with a device. Insetad if a therapy will give back natural function then a function is really “restored”.
In 10 years I have seen slow progress on the cure front, but still some very significant progress has happened, for ex:
1 – http://www.stemcellsinc.com/Presentations/ASIA_FINAL.pdf
2 – http://www.neuroinf.pl/Members/neurofizjo/Article.2014-04-10.4926/getFile
3 – http://www.ncbi.nlm.nih.gov/pubmed/24686445
4 – https://www.youtube.com/watch?v=n-LusnuRcLw
Considering the current situstion in cure reseach I think the longitude prize should focus just on a cure to have a real impact in speeding up progress.
Paralysis commented on :
Thanks, I think you speak for many when you say that. A cure is the outcome pretty much every person with SCI wants. Do you think when a cure is discovered that therapy will be available to everyone with SCI, and do you think it would be effective on people who have not used their muscles in a long time?
paolo-cipolla commented on :
You need to regenerate the spinal cord and reconect the mucles with the brain to know what rehab is best to restore walking, in other words you need to find a cure frst. Many people say robots will be part of the cure, but that is pure speculation at this stage.
Electrical stimulation has been shown to restore mucles even in patients with second motorneuron loss more than 20 years after injury. Problem is to regrow nerv connections.
It will be convenient to make a cure available to as many people as possibble because of the social cost of people living with paralysis that would be reduced with a cure, while an exoskeleton rapresent an additional social cost of people living with paralysis because it leaves you paralized. Does that make sense?
Paralysis commented on :
Also, please take a look at this report by the Nastional Academies of Sciences on the state of research for spinal injury, and particularly how they have defined “cure” (p. 24) http://www.nap.edu/openbook.php?record_id=11253&page=24
paolo-cipolla commented on :
I have looked at your link, it’s interesting and I see they don’t seem to include in the definition of a cure exoskeletons.
I just would like to explain better my perspective.
The goal of the challenge would be to improve the ‘Quality of Life’ of people living with paralysis. ‘Quality of Life’ is a term that is often used broadly by stakeholders within the community of people living with paralysis and often such broad statements can serve to dilute or detract from the underlying factors of a complex multi-dimensional problem such as paralysis.
In the past I have seen many surveies specifically designed to rank specific functions in order of importance to the individual and their quality of life. The individuals were asked to rank arm/hand function, upper body/trunk strength and balance, bladder bowel function, elimination of (AD) autonomic dysreflexia, sexual function, elimination of chronic pain, normal sensation and walking movement in order of importance.
Unsurprisingly, the results of this surveies have been fairly predictable.
Quadriplegics saw hand and arm function as a priority and paraplegics saw bowel, bladder and sexual function as the priority.
Both quadriplegics and paraplegics shared bladder/bowel and sexual function as high priorities whereas paraplegics desired walking movement as a bigger priority than quadriplegics.
Are you nodding your head in agreement so far? All pretty obvious stuff so far right?
Now, let’s have a look at the categories once again and in particular the underlying cause of each:
Desired Function – Cause
Ability to breath – Damage to the Central Nervous Sistem
Arm/hand function – Damage to the Central Nervous Sistem
Upper body/trunk strength and balance – Damage to the Central Nervous Sistem
Bladder/bowel function, elimination of Dysreflexia – Damage to the Central Nervous Sistem
Sexual Function – Damage to the Central Nervous Sistem
Elimination of chronic pain – Damage to the Central Nervous Sistem
Normal sensation – Damage to the Central Nervous Sistem
Walking movement – Damage to the Central Nervous Sistem
There are also some additional functional categories that could be considered such as elimination of spasticity or body temperature control. Again, these are due to a common theme – Damage to the Central Nervous Sistem.
Should we even be ranking these functions at all?
Rather than ask for a solution to a symptom(s) that we are facing in this current moment how about we look to find a solution to the underlying cause?
Shouldn’t the goal of the challenge be to repair the chronically injured Central Nervous sistem?
Wouldn’t this be a better goal for our society and one that would result in more research funds being directed to regeneration and repair of the damaged central nervous sistem rather than scattered projects researching symptoms or compensatory devices?
Let’s not forget about other paralysis induced problems.
What about pressure sores? What about ‘osteoporosis, infertility, depression, obesity, cardiovascular disease, type-2 diabetes, urinary tract infections, unemployment, social isolation, poverty and suicide’?
Yes, admittedly these are massive ongoing issues amongst the paralized people and constitute a massive burden on our health systems.
And yes, there is probably lots of new research that could be undertaken in these areas to improve quality of life and reduce some of those healthcare costs. BUT, almost all of these issues are as a result of a Damage to the Central Nervous Sistem
It’s high time that we acknowledged Cure is the ultimate form of Quality of Life.
No matter how many caregivers you have, how big your financial compensation package is, how light your wheelchair is, how many accessible shops and restaurants there are, how much rehabilitation is available to you, how many incontinence products available to you and how much assistive technology is available such as exoskeleton – it cannot ever compare with the gains in health, independence and wellbeing resulting from the natural return of functions.
If you look at all research going on to regenerate the central nervous sistem you will realize it’s a realistic goal.
The repair of the chronically damaged Central Nervous Sistem is the ultimate form of Quality of Life for paralized people!
I think logic suggests a cure should be the only goal of the paralysis challenge.
arcangela-stefanetti commented on :
“I am one of those who see things as Paolo and I thank him for posting the links here above.
Some more points from me:
1) I also think, that we must give as much support and money as possible to speed up the cure process. If we don’t do it, in the coming years we will be still here saying that a cure is too far away and therefore money must be given to other stuffs…
2) Too often terms are use in a “convinient” way and I completly agree that compensate is more appropriate that “restore” if we are talking about compensatory devices
3) Compensatory devices are expencive, so they will increase social cost and leave people paralized. That is not a great progress in my opinion.”
paolo-cipolla commented on :
I think a prize set on suring paralysis could also fix in part these problems:
Big-Bucks Biology’s Broken Business Model
http://www.bio-itworld.com/2011/08/22/big-bucks-biology-broken-business-model.html
paolo-cipolla commented on :
Read “curing paralysis” not “suring”
paolo-cipolla commented on :
I would like to know what you think about theis:
Do you thnk this is a fake?
Did Nastional Academies of Sciences people know bout this?
Do you think that a cure is not realistic in 2014?
Paralysis commented on :
Paolo and Arcangela,
Thank you both for your thoughtful, passionate, and pointed comments. You are helping in a very positive way the dialog around the Paralysis Prize, which I agree should not have exoskeletons as its focus, but rather on strategies that enable people to live more independently. I have seen the links you’ve provided and they are compelling. Incentive prizes are just that: they are “prizes” awarded in a competitive setting. They are not “funding” per se, and in fact a 10M pound prize purse is a drop in the bucket compared to what is spent on research to help people with SCI (which, by the way, includes research on early intervention to minimize damage, rehabilitation, clinical management, technology solutions, and efforts to find cures). Here is my thinking: the SCI community is a small community that deserves far more research money than they get. Because of that, we — the SCI advocacy community — needs to fight for a bigger pie so that more work can be done, to find cures, early treatments, better rehab, etc. Anything that we can do to shine a spotlight on the needs of people with SCI should be encouraged, especially if it results in more attention and potentially more funding. For that reason, I support the Paralysis Prize. It is not a perfect prize. But it does serve the purpose of raising up the issues of SCI to the lay population, who may not appreciate some of the medical and functional deficits that go along with paralysis. If the Paralysis Prize is chosen, there will be opportunities to shape the message so that people understand the real wants and needs of people with SCI (and other movement disorders). IF THE PARALYSIS PRIZE IS NOT CHOSEN – we will have lost an opportunity to shape the message in a really big way. I think that would be a worse outcome. A vote for the Paralysis Prize is not a vote for exoskeletons – exoskeletons are not anybody’s idea of a real solution. A vote for the Paralysis Prize is an opportunity to get Paralysis on the forefront of people’s thinking, and to correct misperceptions, and to educate the lay public about something they know little about.