BTK Drugs

With FDA Approval, people with SP MS have new hope!

There are five drugs being reviewed by the FDA that, if approved, would offer, potentially a slowing of disability by about 30%! I should clarify that these drugs would be available for people with Secondary Progressive Multiple Sclerosis (SPMS). This stage in the disease typically means that the person gradually gets worse and worse, but no longer has attacks, also known as exacerbations. It’s believed that all the while, with nothing obvious, behind the scenes, so to speak, there is “smouldering MS,” and damage continues to accumulate in the central nervous system.

The new class of drugs are called BTK inhibitors. BTK stands for Bruton’s tyrosine kinerase. (Fun fact: the first time my neurologist talked about BTK drugs, I had to tell him that it reminded me of the mass murderer who was called the BTK serial killer; his method was to Bind, then Torture his victims, and finally to Kill them. He clearly is not a true crime aficionado. He gave a short grin before proceeding to explain how these drugs are thought to work. I sometimes wonder if I am his weirdest patient. If so, maybe he won’t ever forget me and that could certainly work in my favor. Right?)

My neurologist first mentioned these drugs to me several years ago and had things gone according to plan, I would have already been receiving the drug for at least a couple of years. What my doctor told me was that the drugs were undergoing clinical trials in Ukraine, but this was the year that Putin sent his soldiers to invade Ukraine and start a war, that continues more than three years later. I don’t know how the clinical trials were continued, though I assume it had to have taken place in a completely different country. Politics affects healthcare more than we ever imagined. First, with the onset of this terrible bloody war, and second, with President Trump casually dubbing Elon Musk the head of DOGE aka the Department of Government Efficiency. In our system, only Congress can establish new departments, but maybe (hopefully!) there is at least one lawsuit working against this horrible wrecking ball to our entire government, firing thousands of federal employees and cutting the money available for important work to be completed properly.

I, like so many others have been horrified at the callousness with which Musk/Trump have gone about slashing and burning up programs that our people count on, not to mention the lack of any systematic strategy to truly find waste, and firing thousands of employees, leaving them suddenly jobless. Do these geniuses realize that thousands of these people are going to be forced to file for unemployment and start looking for other employment? They will not have the money they expected to have to pay mortgages or rent, or food for their families plus utility bills, medical care, etc. etc. ad Infinitum. It’s like someone said, I know. Let’s lead our country into a reverse depression!

My doctor thinks that the new class of drugs will not be available for about a year (but really, how can anyone make a prediction under the most disruptive, unexpected razing of everything we thought we knew about how our government was supposed to work? As I learn more about solutions that may arise to get these studies back on track, I hope to be able to update you on the availability of the BTK inhibitors. I should note that similar drugs are already being prescribed for other illnesses and conditions. I think I’m glad that there isn’t any provable way to estimate the loss of function that I and many others will experience as a result of the haphazard devil-may-care “techniques” used by DOGE et al. Undoubtedly, the same kind of ceasing research is happening to countless other clinical trials. By the way, if you have not already done so, please contact your senators and Congressional representatives and then call the White House to express how much the Musk-Trump crazy train is NOT appreciated.