I am unabashedly pro-choice. What do I mean by that? I mean that I believe every single one of us should have the right to make decisions about our OWN bodies. And while that has always been my stand, I now see the pro-choice movement in slightly different terms, and I am begging anyone who is both pro-choice or not to stand up and make their voices heard.
What the heck am I talking about? I’m talking about ALS. Lou Gehrig’s Disease. Amyotrophic Lateral Sclerosis. The Glass Coffin disease, so called, because over time people lose the ability to speak, breathe, move, but they continue to be able to see, feel, and hear. A disease that is 100% fatal.
Let that sink in for a moment. Even if you get diagnosed with cancer, even later stages of cancer, some doctor somewhere says there is hope for a cure. With ALS? No way. They immediately tell you that you have a short time to live, there is no cure, no real treatments right now, and that nothing you try to slow the monster down will do much of anything. Literally, they tell you to get your affairs in order, and do what you want with the little time you have left.
Yes, there are really two FDA approved treatments out there, Riluzole and Radicava. Both, the great current options, slow the progression (maybe) by a couple of months.
No one is really gunning for a cure right now for ALS. But there are several very promising treatments out there that may help more dramatically slow the progression, or maybe even help with improving the situation. Not a cure, but hope. Hope that they will buy enough time for a cure to be found.
And where does the pro-life, pro-choice come into this? Those two treatments (Nurown and AMX0035) are working their way through the approval process, but so slowly that each day, we watch the death list grow of those for whom time ran out. Nurown has completed Phase 3 trials. It’s been around for years, and yet it hasn’t been approved by the FDA.
Why not? Because they are too busy with COVID? Sure, that works if you only look at the last nine months. Because the number of ALS patients is too small to care about at the federal level? Maybe.
I don’t know what the hold-up is, but it has to stop. 100% fatal. So give the ALS patients the right to try these treatments. Heck, if the big pharmas are scared of lawsuits due to side-effects, let us all sign non-suing clauses.
Every single patient with ALS will die without new treatments. Every single one. And not just die, live through hell on the way. Give them the treatments — they have nothing to lose by trying, and everything to gain.
So, if you consider yourself a pro-choice person, get off your rear-end and help us. Email your state representatives and beg. Email or tweet to the FDA. Make noise. Donate directly to research hospitals such as Mass General Healey Center. Raise awareness. Do everything you can!
And if you see yourself as pro-life, do the same thing. These are lives with us right now, shouldn’t we be trying to protect them?
Yes, for me it is a personal battle. I will fight with everything I have in my for Paul, but I also fight for all of those who went before us, with us now, or will have this disease in the future.
ALS (MND) patients deserve so much better — help us get them the treatments they so desperately need.