NorCal SCI co-founder, Franklin, is 28 years post SCI and though, for the most part, he has given up on the idea of being able to walk again in his lifetime, he's been asking this simple question: will we ever see a complete cure for spinal cord injury?
It's one of those questions that I've asked a lot of individuals with SCI over the years. Rarely has anyone said a convincing yes. Truth be told, I don't deny that the spinal cord is one complex piece of machinery and scientists have been perplexed by how to work with it. There are a number of studies taking place currently throughout the world with none being in the position of declaring a timeline for the eventual cure and when we find ourselves at this point, it usually means we are years and years away from a potential cure.
Back in October of 2004, Christopher Reeve passed away and his passing energized me to encourage everyone I knew or didn't to vote for Proposition 71 (the stem cell initiative) literally three weeks later. I remember it being advertised as the way to the future of treating diseases and disorders using stem cells. Even Reeve spoke on behalf of it, urging his SCI followers to support it. Most everyone admits now that there was a lot of false advertising that took place that tapped into people's despair in order to galvanize 59% of the voters to help it pass.
A few weeks ago, I spoke with Kevin McCormack, Sr. Director Public Communications & Patient Advocate Outreach at California Institute for Regenerative Medicine (CIRM), the agency that was developed and tasked with spearheading the efforts to help advance research into cures for all types of diseases and disorders. I shared with Kevin my frustrations with CIRM and their work involving SCI. Among them were my feelings that the CIRM Board is not represented by a single person with spinal cord injury in positions that have been designated as "patient advocates" and that there are also way too many Board members from schools that end up benefitting from CIRM's funding which casts a cloud over preferential funding. He assured me that CIRM had established rules that would prohibit any Board member from voting on any funding initiatives involving their school. OK, whatever, I'll hesitantly accept the explanation.
The biggest frustration I have with CIRM is that out of the $3 billion they got in 2004, they have only funded under $60 million worth of studies involving SCI research, about 20 such studies. Thus far, they have funded $2.3 billion worth of all sorts of studies, so that's barely 2.6% of what they have spent. THAT'S NOTHING and truly ridiculous to think that we're on our way. Kevin did say that CIRM has looked at a lot of studies that have been proposed to them but their Board, through a lot of scientific scrutiny, has had to turn a number of them down due to the lack of likelihood to succeed. The only thing they have to show for with that $60 million is the early-stage trials of Asterias Biotherapeutics clinical trials currently taking place with promising though questionable results. Questionable due to the extremely small sample size and that they have yet to conduct blind studies to further validate the effectiveness of the stem cell application. And even still, they're setting a very low bar in terms of the type of functional return that can be achieved. They, too, are years away from getting anything to the market, if ever.
One of the challenges that CIRM has to deal with is that, by law, they can only fund studies/research that takes place in the state. That significantly reduces the pool of available research they can fund. He suggested that they can potentially get around that by getting the researchers to consider moving their work to California. Scientific research is generally under-funded and so, the premise of getting your research funded by CIRM in exchange for moving it to California seems appealing but guess what? No one researcher working on SCI has done that. I was adamant that if California and CIRM were serious about finding cures for debilitating and deadly diseases and disorders, they would need to aggressively fund research anywhere in the world and figure out the compensation part through other ways that will make sure the taxpayers are rightfully paid back from royalties, etc. I realize that I am simplifying things but here's my main point: I do not want to put all my eggs in Asterias' basket because if that trial doesn't succeed, then what?
Though my conversation with Kevin was, at times, heated and emotional, I appreciated him listening to me. Truth of the matter is that while I have no expectations for a cure to affect me, I want it to be developed so that we can do something about all the 13,000 new cases of SCI that are added to the U.S. population every year. It kills me watching very young people become devastated upon suffering SCI.
There are other non-stem cell research being done elsewhere, some with promising early results. One of them is the funding of the Reeve Foundation's Epidural Stimulation Research. Again, they're early with their clinical trials but have had some highly-promising results thus far but they need money to expand the sample size of their study for 36 subjects but are only 60% of the way.
Craig Hospital in Colorado has been undertaking a dental pulp stem cell research which is in its infancy. The Miami Project at the University of Miami has been researching using Schwann Cells and just recently completed its Phase I of the study which included only six subjects. Finally, speaking of Asterias, at last month's SCI Connections presentation of the work being done by the company, Dr. Reza Ehsanian delivered an informative presentation on where things stand with their work. You can view the video here.
Circling back to my conversation with Kevin from CIRM, I implored him to have the Board take a radically different approach. They only have $700 million left to distribute and are planning on going back to the voters in 2020 to raise $3-$5 billion to continue their work. Given the lack of progress they've made in over 10 years in the field of SCI, I will be reluctant voting for the ballot measure again (and encouraging everyone else to vote for it like I did in 2004) if they're not going to change anything organizationally as well as operationally. Additionally, the political opponents of this type of spending will be having a field day telling the public how their tax dollars were spent with little to show for. Doing things the same way will not yield a different set of results, I am afraid, and I don't want to see another 13,000 new members of the SCI population every year.
WHAT CAN YOU DO
You can contact Kevin at CIRM and give him a piece of your mind. His e-mail is firstname.lastname@example.org or by phone at (510) 340-9147.
Contact your state legislator and tell them how you feel about the slow progress California has made in researching cure for spinal cord injury. You can find your representative by entering your address HERE which would allow you to go to their web site and contact them