Why We Don’t Treat Spinal Cord Injury
While I often write about what I experience and my writing can also be a form of personal catharsis, it’s rare that I write about the internal workings of our provider network or Regenexx. As Chief Medical Officer and company founder, I often have to make tough calls. Hence this morning I’ll discuss a recent decision about treating spinal cord injury that was a difficult one to make. Let’s dig in.
A Linkedin Message
Several weeks ago I got a very strange message on Linkedin. Basically, a woman was asking me to supply clinical and scientific data on why the use of our procedures would help her father who was a quadriplegic. At first, I assumed the whole thing was a big mix up, so I shot back that we didn’t treat this problem. She then shot back that her father had an appointment scheduled to have his spinal cord injury treated at one of our network affiliates. That’s when things got really weird.
As we corresponded, this woman was understandably upset by my answer that we had zero convincing clinical data that any procedure we offered would help her father recover motor or sensory function caused by his spinal cord injury. She relayed how difficult it was to even consider air transportation for a quadriplegic (which I’m sure is a nightmare). After I dug into this further, I found out that one of our network sites had told her and another patient that they could treat a spinal cord injury with platelet based neck injections. While the site was cautious about the claims, this caused a real dilemma for me as the Chief Medical Officer, as we now had two angry spinal cord injured patients set to fly across the country to get a procedure I felt was almost certain to do nothing.
The Surgical Alternative versus the Desperation Market
Ever since I founded this company 15 years ago, our focus has always been 100% on orthopedic surgical alternatives. While this is our area of expertise, there’s another reason we haven’t wandered out of that world. We exist in a marketplace that has many options for patients. Meaning a patient with knee arthritis can opt to have a knee replacement, radiofrequency lesioning, or a Regenexx procedure. Hence our job is to educate the patient about why the regenerative medicine option is usually the best choice.
However, there’s another marketplace for regenerative medicine that has a very different set of dynamics. I call this the “Desperation Market”. By that, I mean that we have people with incurable diseases for whom there is no traditional medical cure or treatment. These patients are desperate for anything that could help them, which is certainly reasonable for anyone in their shoes.
Why are these two markets different? For the first type of patient with knee arthritis, if the procedure doesn’t work, they can always get their knee replaced. For the second type of patient (i.e. someone with spinal cord injury), there is no other option.
While this may seem like a subtle difference, when you’re sitting across from these two different patients, it’s not subtle at all. One patient is trying to avoid a more invasive procedure while the other is resting every hope and dream they have for a normal life on your shoulders. Ultimately it’s the difference between dealing with a patient who is deciding if they should take a helicopter or speedboat from their cruise ship versus one who is standing on the deck of the SS Titanic trying to frantically find a piece of wood to cling to when the ship goes down.
A VERY Tough Decision
When I reached out to our network site, they stated that they had a handful of patients who seemed to show some minimal improvements with platelet based neck injections into the typical structures we would treat for neck pain. This was surprising, as we have treated many quadriplegics and paraplegics with platelets for neck or back pain and have never observed any consistent improvements in their spinal cord injury. In addition, our HQ clinic had more experience with this approach not working than the local clinic did showing some slight efficacy.
As I dug deeper, the issue only became murkier. For example, on the one hand, the clinic said that it was being responsible by making sure the patients knew this was experimental and there were no guarantees. However, when I tested that against what the daughter believed as she booked a difficult trip to bring her quadriplegic father across the country, she understood that what they were offering was effective spinal cord injury treatment. Which is one of the natural problems with the desperation marketplace. Whatever it was that she heard, it was invariably interpreted as much more positive than it really was. That’s why she reached out to me as the founder of Regenexx to grill me about the data before she made the arduous trip.
So what did I decide? I told the clinic that they would need to perform a Randomized Controlled Trial BEFORE they began charging to treat these patients. Bringing quadriplegics across the country for a treatment that likely wouldn’t work wasn’t in keeping with the values we have as a company. Ultimately the clinic dropped off of our network as they wanted to continue to offer this care to quadriplegics.
This was a very tough decision for me personally. However, when I founded this company 15 years ago, the focus was on upholding some very high standards, even if that meant we made less money. For example, we have an expensive registry that has been tracking patients for 15 years. This has cost millions that never went to the bottom line. The same holds true for a research lab that cost more than a million to outfit and a team of researchers and many completed projects that has also cost millions. Another one of those standards that’s non-negotiable is that Regenexx is a surgical alternative and not focused on treating incurable diseases.
The upshot? As CMO I have many tough decisions that I make. This was one of the more difficult, but in the end, I’d make it again.