Vancouver, BC. – I’m attending the Interdependence 2012 Global SCI Conference this week and this is the first of several blogs about the meeting. The event is part of the 25th anniversary celebration for Rick Hansen, the Canadian paraplegic who wheeled nearly 25,000 miles across 34 countries way back when and raised $26 million for spinal cord injury research and accessibility.
This meeting was assembled by the Rick Hansen Institute/Rick Hansen Foundation. The Foundation leveraged the money from Rick’s trip into a $245 million investment in research, rehab and quality of life programs. The Institute is a charity that hopes to “translate” discoveries into actual treatments and to implement “best practices” into the care and well being of the SCI community.
Michael Fehlings, the neurosurgeon/researcher from Toronto Western Hospital, chaired the program advisory committee for the meeting and set the agenda in his opening remarks. (He ought to be quite familiar to regular readers of this blog. Go here for more.) If I-2012 has a lasting legacy, it is in the encouragement of collaboration and partnerships.
Fehling’s mentor, Charles Tator, also a scientist/MD from Toronto (and likewise, familiar here ) provided the morning’s keynote address, an overview of the last 25 years of SCI research and a speculation about what needs to happen in the next 25. Much progress has happened toward restoring function in injured people, he said. “But the bad news is that our generation didn’t finish it. The good news, especially for young people here today, is that there a still a lot of answers ahead, and lots of hope that we will get these answers into the pipeline.”
Tator noted that in some areas, much progress – even dramatic progress – has occurred. Emergency management, for example, has reduced the amount of disability. Surgical techniques have preserved much function. Mortality rates were 25 percent of all SCI cases when Tator began his career. That has been reduced to just five percent.
On the research side, Tator said that for what is a relatively young field of science, the fact that 10 prospective randomized clinical trials have taken place is important. OK, so none of the trials produced anything close to a treatment in universal use today, and two bankrupted the sponsor companies. Still, it’s a good sign and more trials are coming.
Studies of pathophysiology have revealed much about what happens in SCI – central hemorrhagic necrosis, infarct, reduced blood flow, etc. “We see now how formidable the enemy is.”
Tator enthused about his own work to regenerate axons (they counted 35,000) in an animal model using stem cells and a bioengineered channel for growth and guidance. There is an upside in this work not just for new injuries but for people living with paralysis. Advancements in cell replacement (including stem cells), engineering and regenerative strategies make for a hopeful future. Among the next 25-year goals: better prevention and diagnostics, and treatments for chronics.
Next was a guitar player named Don Alder, who was in the pickup truck with Rick Hansen when it crashed and injured Rick. Don didn’t get hurt. He’s a very skillful guitar player.
The morning plenary session was called “Investing in the Future of SCI Research: The Fiscal Benefits.” This featured four leaders of nonprofit organizations that fund SCI research: Peter Wilderotter, President and CEO of the Reeve Foundation (a partner in hosting the I-2012 meeting); Marc Buoniconti, whose spinal cord injury was the impetus for the Miami Project to Cure Paralysis; Bill Barrable, who heads the Rick Hansen Institute; and Stephanie Williams, a former biologist who is head of the Spinal Cord Injury Network in Australia. Bernie Bressler of the University of British Columbia moderated.
Barrable: Canada has 86,000 citizens affected by SCI, projected to reach 120,000 in a decade. It’s not a huge number but the economic impact to the nation is $3 billion. “From an entrepreneur’s perspective, there is an opportunity to find a treasure chest for translating SCI research to action.” An example: mitigating preventable secondary complications of SCI – pressure ulcers cost $4 billion a year in the U.S.
Williams: Her group strives to align research, medicine, rehab and the SCI community toward better communication, and therefore, more research capacity. She says a business case can be made for supporting more science but that there is a strong humanitarian imperative too.
Wilderotter: The Reeve research portfolio is based on collaborative networks: the International Research Consortium on Spinal Cord Injury, a group of labs collaborating on projects; on the NeuroRevocery Network, a multi-site clinical and research program based on the success of patients in activity based therapies and treadmill training; and the North American Clinical Trials Network, a collection of medical centers with expertise and infrastructure to carry out clinical trials.
Buoniconti: The Miami group has invested $350 million in 27 years toward cure. A clinical trial is expected to get FDA approval soon to test Schwann cells implanted in the cord (supported along the way by Reeve funding for the Mary Bunge lab at Miami). Also working to get cooling, or hypothermia, through more trials.
Some of the big ideas: government money is essential but vulnerable; is there a return on investment? Private sector, including Big Pharma, appears to be less interested in tough science such as SCI. Nonprofits need to secure patents.
Collaboration among scientists, and among those who fund them, is essential. The field needs to make a better economic case that SCI research is indeed an investment, and to make a case that any intervention reduces health care costs. What about charities working with industry to move research not just toward clinical relevance but toward commercialization – has happened in other conditions, e.g. cystic fibrosis.
Someone asked the panel a question: Why would a person who is “agnostic” about SCI – that is, with no compelling personal reason to care about paralysis – why should that person give money? Because it’s a worthwhile public health issue? ROI? Savings to society? Good for humankind? The field, it seems, still needs time to come up with a good answer.
More to come. SM