Party Like it’s 1995…

“Life is like a box of chocolates.” – Forrest Gump

“That’s nice, but I don’t really like chocolate.” – Mitch Canton. (Yes, seriously, I’m just not a fan… maybe a little on special occasions).

It was 1995. Forrest Gump won the award for Best Movie. Those mighty Braves won the World Series, beating the Indians in six (Guardians, schmardians, they’re the Indians).

Gas was $1.15 a gallon. A buck fifteen, Yes. One dollar and fifteen cents. Here in 2022, gas is still $1.15… but only if they are charging by the Quart! 🙂

In 1995, the world lost Mickey Mantle, Dean Martin, and Wolfman Jack. But Logan Paul, Post Malone, and Kendall Jenner were born. Nothing personal, and feel free to disagree, but I think the world took the ‘L’ in those trades.

And of course, in a dramatic display of just how well our judicial system functions, OJ Simpson is found Not Guilty in the Trial of the Century. (I’m not certain the correct font to use for sarcasm, but pretend it was used here).

Anyway, why all the flashbacks to 1995?

You may have read something this week about the FDA approval of a new drug to fight Amyotrophic Lateral Sclerosis. Well, until this year, 1995 was the last year an oral form drug that was developed to treat ALS was approved by the FDA. (Note, they did approve a very difficult to administer IV/port-based drug in 2017, but usage is both expensive and quite limited).

Twenty-seven years between drug approvals. 27. Nearly 10,000 days.

Millions of patients, family members, and friends, who have been directly and indirectly affected by ALS, have suffered in the nearly three decades since the last approval. It’s about damn time.

Interesting aside: I read that some of the initial research money associated with this drug came about due in part to proceeds from the Ice Bucket Challenge a few years back. If you participated in that, Thank You.

While the drug is a welcome addition in this ongoing battle, sadly, it’s not a cure, as ALS remains an incurable disease. But the drug has shown some decent test results in potentially slowing the physical decline associated with the disease. I guess beggars can’t be choosers here.

As an ALS patient, the ultimate prognosis is as dire as it is certain… it’s going to get really bad, then you’re going to die. Well.

Yes, as I’ve referenced before, I’m all too aware that none of us are getting out of here alive. But, if you’re diagnosed with a terminal disease a full 20 years short of what should be your average life expectancy, your view of that scenario changes somewhat. Candidly, it’s impossible to adequately explain the full-on desperation a terminally ill patient feels.

And that is where my disdain for the approval process comes from. An FDA advisory group actually voted *against* FDA approval of this drug about six months ago. Asinine. As Forrest said, “I guess stupid is as stupid does.” 🙂

Seriously, I’d welcome any one of those members to actually live with ALS, and then have the short-sightedness to withhold approval because, quote, the data was not exceptionally persuasive, unquote. Hmmm. How ‘bout kiss my exceptionally persuasive ass.

I’m not at all (emphasis, at all, seriously, don’t even start…) interested in a debate here, but you have to understand the way I look at it. They recently provided expedited approval for a product that had much less clinical testing time, forcing it on people who may not have even wanted it, all while allowing the manufacturers of said product to have immunity from liability.

Considering all that, the least they can do is approve a drug for folks who are desperate and facing a death sentence. My thought is, why not let me and others like me who actually have to suffer through this ordeal decide if we want to take a drug that may or may not have the intended outcome. Let us take our chances. We already do every damn day.

Look, it’s not like I’m meeting some dude in the alley, where he’s selling homemade pills out of the back of his ‘86 Accord. They have had multiple trials, with loads of supporting data. There were very few negative repercussions. Let’s go, times a wasting.

It should come as no surprise that I follow this pretty closely. After the initial advisory committee denial in March, I heard the chatter that they might revisit, which is somewhat rare and led to a belief they would reverse course and approve. So several weeks ago I talked to my neurologist about what happens next. He said even with the FDA approval, it may be months until patients have access to the drug. Manufacturing needs to step up. Distribution channels need to be filled. Then the most critical and likely most challenging issue… what happens with insurance providers? We’ll have to see.

The bottom line is that we finally have another approved drug in the effort to potentially extend our quality of life as we battle ALS. Is it perfect? Maybe not. Will it be readily available in time to help me? Who knows. But it is a step in the right direction, and hopefully the first of many more steps in this ongoing struggle to find a cure for this cruel, devastating, and incurable disease.

For now, as we celebrate some semblance of progress in this battle, I’m going to grab me a box of chocolate and channel a little Prince as we party like it’s 1999, er, 1995. 🙂

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