Ten frequently asked questions concerning cure of spinal cord injury

[aton]

I think we all want someone to tell us that we’re gonna be all right. Kind of a reverse of when we first heard the bad news that our paralysis was for the rest of our lives, myself included. With that preface, I’m a high level quad due to a stroke or an infarction. My doctors know less about the condition than I do. Will treatments depend on the type of injury?

[Wise Young]

Originally Posted by Alexia

Dear Dr. Wise,
you started this thread in 2004 with a very positive forecast that 3rd generation therapy would be available to sci patients in approx.8 years, bringing functional improvement also to chronic injuries.
Now nearly 4 years have passed....
Do you still think such therapies will be available in less than 5 years time?
What is your opinion on a possible cure now?
Has it changed? For better or worse?
I'm a 5 years post injury T12 incomplete para and I worry that more the time passes by since the day of my accident, the less I become a suitable candidate for any possible "cure".
Thanks in advance for your response,
A.

Alexia, I am sorry that I did not see your post earlier... Let me try to answer your question concerning "possible cure". I continue to believe that a cure is not only possible but imminent if we have sufficient resources for the research.

Let me try to answer your questions from a personal point of view because it is the one that I know best and it helps illustrates the obstacles that we face to achieve curative therapies of spinal cord injury. For a long time, I thought that the road to the cure was to do science and get scientists to communicate and work together. So, I had started the Journal of Neurotrauma, the Neurotrauma Society, established the first multicenter animal spinal cord injury study, helped found Acorda Therapeutics dedicated to spinal cord injury therapies. From 1994-1997, I lobbied Congress to double the NIH budget.

In 1997, I became very frustrated by the slow progress of research and decided to do something about it. I moved from NYU Medical Center where I headed the Neurosurgery Laboratory to build a new center at Rutgers University. In 2000, I hoped that we would embark on a new era of clinical trials and tests of stem cell and combination therapies. These hopes were dashed not only by the 9/11 attack but policies of George W. Bush who not only restricted stem cell research but flat-lined the NIH budget and shunted much of the NIH budget for bioterrorism research.

I worked on getting state funding of spinal cord injury research (Quest for Cure), helped encourage and prepare the spinal cord injury community to lobby the goverment, and to protest the restrictive stem cell policy. These activities have yielded several successful state initiatives to fund both spinal cord injury and stem cell research. Starting 2003, I began to work seriously to get clinical trials going.

Looking back, I realize that I have spent much of the past decade fundraising and lobbying, to the extent that I should call myself a neuropolitician than a neuroscientist. Until 2004, I had never every campaigned for any politician and now I am doing so for people that believe in our cause and will help us get there. Finally, I organized a clinical trial network in China.

Progress has been frustratingly slow and hard but we must keep pushing. The Christopher and Dana Reeve Paralysis Act is an example. It started as any idea in 2003 and is now finally reaching the point where the House of Representatives has passed it and the Senate is considering it. That has been five years of lobbying by many people. If passed, the CDRPA will be the first time that the spinal cord injury community has really done something for itself on the federal level. But, it is the first step, a mere $100 million for clinical trials. We need a billion but it is a good first step.

We are now on the verge of a new administration that is likely to remove the restrictions of stem cell research. All three of the democratic candidates for President will significant increase NIH funding. It will be helpful when our own government is no longer obstructing progress towards the cure. But, that doesn't mean that our work is done. It is just starting.

In the past eight years, we have made some progress in clinical trials. Many groups have now transplanted a variety of cells into the spinal cord and we know that it is safe and has modest beneficial effects on function. By themselves, they are not a cure. They need to be combined with other treatments that provide sustained growth factor support and block growth inhibitors.

I don't know where the first curative therapy will come from but I am confident that it will come. The first therapy is always the hardest. Subsequent therapies will be easier, I hope. Right now, we have a huge logjam of therapies that have been shown to improve animals and few therapies that have been tried out in clinical trial.

Wise.

[vnewjay]

Hi, Wise,

How do you determine the safety of this treatment？

I think this is first Problem of any treatment of Stem cells !!!

[vnewjay]

Hi, Dr.Wise,

How do you determine the safety of this treatment？

I think this is first Problem of any treatment of Stem cells !!!

[Wise Young]

Originally Posted by vnewjay

Hi, Dr.Wise,

How do you determine the safety of this treatment？

I think this is first Problem of any treatment of Stem cells !!!

Safety is relatively easy to determine. You do phase 1 trials to establish safety. That is what we are doing. By the way, many groups have now transplanted cells into hundreds of patients. All they have to do is to document adverse events carefully and carry out careful neurological examinations before and after, to make sure that the treatment is not causing any deleterious effects including loss of neurological function.

Wise.

[Alexia]

Dear Dr. Wise,
thank you for replying so promptly and in detail.
Your response confirms my worries that my future depends on politics and funding, making me feel nearly useless in my search for a cure.
I am from Italy and as you can imagine the inflence of the Church is a great obstacle to stem cell research here too.
Please keep us posted if and when you will reach any new results, as (I am sure to speak for anybody in my position) good news it's what keeps our hopes up and helps us in our daily life.
Thank you,
A.

[Wise Young]

Originally Posted by Alexia

Dear Dr. Wise,
thank you for replying so promptly and in detail.
Your response confirms my worries that my future depends on politics and funding, making me feel nearly useless in my search for a cure.
I am from Italy and as you can imagine the inflence of the Church is a great obstacle to stem cell research here too.
Please keep us posted if and when you will reach any new results, as (I am sure to speak for anybody in my position) good news it's what keeps our hopes up and helps us in our daily life.
Thank you,
A.

I am sorry for my rambling reply to you earlier. Everything depends on politics and funding. You and other members of the community can do to help the scientists and clinicians do their work better. By joining forces, the spinal cord injury community can let the world know that this is important and push for the cure.

Regarding the Catholic Church, I understand that the Church opposes embryonic stem cell research but they are strongly supporting umbilical cord blood and adult stem cell research, including placental stem cells (Source). I am glad that they are supporting that research in Italy.

The IRCCS (the Italian equivalent of the National Institute of Health) does have a Department of Regenerative Medicine (Source) that is focusing on umbilical cord blood and adult stem cell therapies.

Several centers in Italy are have emerged and are now conducting significant therapeutic studies in spinal cord injury, including my old friend Alfredo Gorio in Milano. Several Italian centers have declared their intent to focus on regenerative medicine, including University of Pisa, Genoa, and Milano, that are doing embryonic stem cell research using EU funding (Source).

I received your private message.

Wise.

[Scipilot]

After 32 years of spinal injury I have accepted that if a cure is found it will not be for people like myself, it would I imagine be for those of a year or less injury time.

Don’t make the mistake of living your life for a cure, live your live to the best of your ability and if a cure comes and its for you, great, if not.

Que sera sera

[Wise Young]

Originally Posted by Scipilot

After 32 years of spinal injury I have accepted that if a cure is found it will not be for people like myself, it would I imagine be for those of a year or less injury time.

Don’t make the mistake of living your life for a cure, live your live to the best of your ability and if a cure comes and its for you, great, if not.

Que sera sera

Scipilot, I appreciate your view. I agree that people should live their lives to the best of their ability and that they should not live their lives for a cure. On the other hand, if a cure occurs, or if they can help make a cure happen, why not?

At the New York State Spinal Cord Injury Research Board meeting in the NY Academy of Science this week, there was considerable discussion about the cure. There were some who felt that we have come against a "brick wall". There are others who believe that we have made incredible progress. There were many who expressed the need for caution and more study.

My friend Patricia Morton spoke up, saying that if John F. Kennedy said that we should study how we can get to the moon, we would still be studying how to get there. He said instead, let's get to the moon and we did. She also pointed out that nobody quibbles about a cure for cancer, a cure for diabetes, a cure for Parkinson's disease... why should we be quibbling about a cure for spinal cord injury? Please understand that I am paraphrasing her.

In my opinion, people with spinal cord injury are not stupid. They understand that treatment advances will come incrementally. In the past, I have explained what Christopher once told me about using the word cure. "Why aim low?", he asked. He was right. We should aim high and work hard to get there. If it is not possible, we will find out. But, until then, why aim low?

Wise.

[addiesue]

Thank you for the above post Dr Wise.