We introduce ourselves. What we’ve been given is a set of questions. We’re asked to work our way through them, with a volunteer facilitator and a volunteer note-taker. Later the whole group plus the panel will talk about these discussions.
One member starts by talking about her company that’s developing a full range of motion exoskeleton …. people ask why do this if we’re getting to epistim?
She says we’ll need both, and if you can integrate them it will be great.
Q1 is about strategies for rehab and how we add to it. Yes, lots, please — full range of motion exoskeleton, water therapy, rehab centers … “How do we add to it? How do we START with it!” There are people at this table with 3 yrs & 25 yrs injuries … not enough has changed. Rehab is still a very sore spot in this community.
Q2: Rehab, a lot or a little? This is about the difference between Andrei and Megan, I assume. Andrei’s team is doing a zero rehab approach. Megan is a PT … The answer is that it depends on what we want. We have a person who is determined to get on her feet … she’s Canadian — a country with huge resources and a small population. “We should be able to pay for what every single person needs,” she says.
“They might as well offer us euthanasia if they’re just going to give us wheelchairs.”
Priorities: Bowel, bladder, sexual function … but we shouldn’t have to choose.
So … how to get things to clinical relevance? We need to start a human rights movement!
Time to go back to the experts panel ….
Matt: When I first came to this conference in 2010, I learned the most at the bar. That’s where you’d sit down and have a conversation about what you just heard. So the reason for these table discussions is that I wanted to bring “the bar” into this room. I’m an extrovert, so it was easy for me to go barge into whatever scientists were talking about amongst themselves.
So, tell us what happened at your table.
In response to the protocol question, it depends on the level of injury and the current lifestyle of the person. People are willing to participate in research if there’s going to be a clear outcome. Of course it would help if rehab was quicker and closer to home, but if the benefits were there we’d do it.
Matt asks board member Shelly (who works for a company that helps manage clinical research trials) to respond to what can happen. She talks about how people who have gone all the way to Thailand for stimulators are unable to get enrolled in rehab because those devices are not yet FDA approved. Dr Kassioukov says that all of his patients start out wanting to do as much rehab as they possibly can. He says that the truth is that over time, the shorter the trial, the more likely it is people will fully participate. In terms of cost, we’re talking 100s of thousands of dollars per person, and most of it is rehab. The Louisville group, says Rob, spends $300-350k per patient. What we’re trying to do is validate this. Prove that it’s effective. A problem is that right now we don’t know that this thing is safe, not in the long term. If you got one and you got back all the bladder function but 10 yrs later you lost all function below the injury, would you do that?
Well, right now we have baclofen pumps on the market, and we know that exactly that sort of thing happens. Over time, it causes problems. Let’s focus on the low-hanging fruit, like spasticity reduction. If we got the thing approved for that specific issue, we could have a product that everyone could use.
Lyn: You raise an important question, but here’s a complication. We aim a lot of studies at the worst injuries because we’re trying not to do any damage. The evidence is compelling when you get someone who couldn’t move against gravity … it’s not just because it’s sexy and mediagenic. It’s because we have to provide the statistical evidence, and that’s hard to do with injuries that are vastly different from one another, as most incomplete injuries are.
But, says a person from the audience, these stimulators are placed in people NOW, for pain. They have been for decades. Thousands of them. So we know a lot already about what they do and don’t cause by way of damage … what we don’t know is how much data is enough? When does a company pull the trigger to push for getting these to market? Does anybody know?
Lyn: I do not have an answer.
Well, we need to figure out a plan. (And there are several variations of that comment.)
David: Well, I’m just a rat guy, but I would suggest that there are things we’re doing that we should stop doing, so that we’d have time and money to focus on better projects. The subjects who did all that body-weight supported training did not get better as a result.
There’s still a very hard pushback against “allowing” patients to do rehab acutely … “There’s no evidence that any of this will help, and we have to get people ready to go home.” Now that’s something I remember very clearly.
Alrighty. Matt says that it’s time for lunch! Full morning.