Stuck Between a Rock and a Hard Place

I have multiple sclerosis. I usually don't state that so boldly, especially not to such an unknown and possibly large (I can dream) audience. It's not that I find it difficult to talk about, nor that I wish to keep it a secret. But I do find it an awkward thing to insert into a conversation. But I'm getting better at it.

Now, for those of you unfamiliar with this unpredictable and highly variable disease, it has no known cure and proven treatments can sometimes seem worse than the disease itself. There's no standard rate of progression and there's really no way of knowing how fast a particular individual will progress, or what specific symptoms they will experience. The list of symptoms is long; I might even venture to say endless. And while there are a few things that doctors can do, and a few lifestyle changes that people can make, there seems to be no real way of managing the disease, especially the further one has progressed.

Some may call this hopeless. And for many people with MS, that's exactly what it feels like. The slow, and in some cases quick, loss of physical and cognitive abilities is a tough pill to swallow. The effects are not only physical, but mental, emotional, financial, relational, etc.

So, when something comes along with even a hint of hope, this hint is enough to do whatever it takes to find out if it will change a situation even just a bit.

Treatments being offered in places like China, India, and Mexico, like stem cell therapy or more recently the "Liberation Treatment" for CCSVI, seem worth every hefty penny that they cost. While numbers are unknown, there's likely thousands of people who travel abroad every year for a treatment that is unavailable or prohibited in their own country. Most people are aware that these treatments are unproven, experimental, and hold no guarantees. But they also feel they have nothing to lose at this point.

I get that, to a certain extent. I have MS, but I'm not in a desperate situation. I have my issues, but I still work full-time, walk freely on my own two legs and haven't had to drastically change my lifestyle yet. But there are days when I seem to have barely enough energy left in my limbs to get up the last two stairs, or I can't seem to button up my shirt because my left hand isn't cooperating, or that I have to cancel yet another commitment that I've made because I just can't do it. These days, I secretly wish I could have a procedure of some kind, simple or not, and be better. It would be nice to feel that I can get on with life, make plans with no thoughts of whether I'll be able to pay for medicine or whether or not I'll have the strength to follow through.

But, I also work in health law and policy. I am not a lawyer, policy expert, scientist, or medical professional, but through my job, I am exposed to all of these people. I have learned a great deal about how complicated our bodies are, and really how long it takes for even small scientific breakthroughs to become clinically relevant (despite what the media will have us believe). This isn't because of bureaucracy, laziness, financial gain from big pharma, or many of the oft-blamed characters in the health sciences arena. We are fearfully and wonderfully made and while this may seem a curse on days when we wish cures were simple and easy, the fact is that our intricate bodies are also the reason we can survive extreme weather conditions, heal from the unimaginable, and even just function day to day going about our routine activities.

So, here I am stuck in the middle. I empathize and want to support people in their endeavours to become well. I believe we all need to have the biggest decision-making role in our own health, and that yes, doctors don't always know everything. But I also think that making decisions about our own health without the assistance of medical professionals can have serious risks, can make the process of finding treatments and cures even more difficult, and that the ends don't always justify the means. I get the need for long, drawn-out clinical studies. I get that our minds are more powerful than we could imagine and that placebo-effect is a real thing that can skew results. I also get that in order to have medical procedures funded by universal health care, there needs to be a justification for allocating our scanty health budget dollars. If everything that seemed like a good idea was funded, even if there is no evidence for it, we'd be in even bigger troubles with our health care system than we already are.

So, what do we do when there seems to be no hope to offer someone? When the only option is an unproven, untested, expensive procedure that may carry huge risks or have no effect whatsoever, but might also give someone back their health? Go for it and hope for the best? Or wait and be patient for the long, confusing, scientific process and clinical studies to prove that a possible treatment is safe and effective to some degree?

The issues surrounding unproven treatments are much more complicated than I've discussed here, and perhaps I will write more on this topic at a later date. But I'm trying to work it out for myself, and this is a good starting point for now.