Breaking News: [this] creates more mysteries.

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There was an interesting news article floating around yesterday that I wanted to share.

The article is a high-level summary, a feel good story, of two patients who received CAR T 10+ years ago, when the treatment was even more in its infancy than it is today. Research began in the adult population, as research often does. They don’t subject children to new science until they are a bit more sure of its efficacy. But for older adults who are out of options, new science can mean survival. And that is what this article details, the exciting and coveted “c-word”: cure.

New science can also mean a whole lot of trial and error, and for ‘out of options’ cancer patients, that can still, likely, mean death. Many of the commenters on the NYT article make sure to point that out.

“So two patients thrived, what about all those who died? And to what end, since this treatment is so costly!” one commenter remarked.

I understood completely the remark. In the cliché way that is so common to us, the journalist glorifies the story of the two men to focus in on a topic that feels good to read and doesn’t make much mention of the many, many more for whom CAR T has not produced a cure. But this is how science moves slowly forward. Many people choose to step-up and say, “I’ll go first.”

Also worth noting, the article/story is based on this paper, also published yesterday, which is not about side-effects, mortality, cost, etc. The paper is about how this specific decade long remission was achieved.

I am so thankful for the life changing decision that each and every CAR T patient has made to further this science. Most of whom found no cure in CAR T, but their sacrifice moved the science slowly along to a point that we can start using the words “cure” and “CAR T” in the same sentence.

Last year when we decided to have Beaudin participate in the trial for CAR T, Joshua and I agreed, “If Beaudin’s participation in this trial could possibly cure him, but also move this science forward, then why wouldn’t we do it?” It sounds stoic, but trust me when I say that signing my child up for an experimental therapy is one of the hardest decisions we have made to date. The decision was made easier because we had (limited) data from those who had gone before us.

The only way to move forward the science of CAR T is for a whole lot of people to say ‘yes’, for obnoxious amounts of money to be spent on trials (this can be a topic for another time, I am not in agreement with this model- but this is the model, for now), and for the rest of us to cheer from the sidelines.

Notice I said, “cheer”, not “critique”.

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I made the mistake of reading through some of the comments in the NYT article. Mistake? Well, maybe not entirely. But it is sometimes hard to digest ignorance before sunrise (as I sit writing this post in the dark of the 5 o’clock hour, my favorite). It’s shocking to see how quickly people dive into the economic and societal injustice of spending >$400,000 on an older adults cancer treatment. I get it, I mean, pre-pediatric cancer Betsy would have even agreed. The economics of this system are bonkers. But we all must remember that that cancer patient is an actual person. An human with a soul, and a meaningful life, deep relationships, and I’d go as far to say, a general desire not to die. These are people who are choosing to do the hard thing.

I agree the system isn’t perfect, but it’s what we have. The only way we can move this science forward so that kids like Beaudin, with their entire life ahead of them, God willing, have access to it, is if people offer their last chance on it.

What thankfulness I have for those who give that to my son. Feeling tender for all those who have gone ahead of us on the CAR T road. May we someday understand the mysteries of CAR T better, and be that much closer to a universal cure.

4 comments

  1. This has me teary out here in rainy Philly this morning. Thanks for this word of challenge, encouragement, vigor, prompting…amazing how our perspective changes as we experience the “dust, sweat, blood from the striving, the erring, the coming up short, the enthusiasm, the devotion, the spending one self in the arena of life…”
    Grateful for you and your stirring, always.

    Like

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