What in god's name? Isn't this human testing? Or Health Canada just doesn't want to pay until it's too late? Is this even legal? Wtf?
There are basically 2 or 3 classes of drugs with MS. The "first line" treatment is cheaper generally, and are daily injections or pills. They work for some people, but only slow relapses, not long-term damage or disability (they are no neuroprotective)
The second line are some injections and also daily pills. These work better at slowing relapses, but generally still do not prevent long-term disability (end up in wheelchair, no energy, muscle spasms, etc).
If you fail both of these classes, you get access to third line, which are the magic ones. These include Lemtrada and Tysabri. Lemtrada is an infusion drug (similar to chemo) that you only get twice and then works for years or decades. Some people have gone 12 years with no further disability or progress in the disease, effectively curing it (for some). The funny thing is, Lemtrada is actually cheap since you only need it once, not forever. But there are higher risks with the better drugs. Tysabri kills something like .6-1% of those who take it. Lemtrada hasn't killed many, but can sometimes cause thyroid problems (which can be fixed/dealt with, but still aren't great). But they are amazingly effective, slowing down progress of the disease and reducing relapses by 5-10x sometimes.
Next year (or early 2017) a new drug is expected to be approved, called Ocrelizumab. It's just as good as Tysabri or Lemtrada perhaps, but with almost no risks. But there's a good chance Health Canada will also put it as a second or third line treatment, which is criminal. Why not spend the money and prevent further damage? With Lemtrada, the person often doesn't even need any treatment afterwards for 5-10 years...that's huge money saved! And all the experts agree that patients who are just diagnosed (my gf is 25) should be treated aggressively early on. Coincidentally we had one of the biggest MS experts in the world in Regina yesterday afternoon and we went and met him and talked with him, and he was shocked at our laws (he is from the UK where it's easier to get better drugs). He advised we speak to our MPs or MLAs.
The only other alternative is to go private, but to do a Lemtrada infusion could be anywhere from $60,000 to $100,000, money we don't have. There are apparently some doctors in Toronto that have bent the rules and got it done for early patients, but we don't know any of them. We could try fundraising...but $100,000 is a lot, I don't think we could ever get that much.