When we were in Philadelphia in August for Beaudin’s 12-month post-HuCART tests, we discussed the next follow-up with the team. Because he had reached 12 months without recurrence, visits would shift from quarterly to biannual, with the next appointment at 18 months (February 2023). That visit would be “labs and exam only,” meaning surveillance of his spinal fluid and bone marrow would end.
They didn’t want to see us for 6-months! Wow.
I asked how often we needed to get labs back at home and they shrugged their shoulders and said casually, “eh, maybe one time between now and then?”
His life hung in the balance for so long and now things have gotten very casual. I’m not adjusted.
“Ok, well…” I treaded lightly, “I am not sure we will travel all the way here….just for labs.” All I could think of was what over-kill that was.
It is tricky though because I don’t want to look a gift horse in the mouth.
Being a part of this study made a million dollar, less toxic than any alternative, treatment plan available to Beau.
Eternally grateful is the only way to summarize it.
But that’s the summary.
The nuances are far more…. nuanced.
The Unforeseen Costs of Trial Medicine
Participating in these studies, first CAR T then HuCAR T, has made a way for us. The cost of the cells alone is upwards of $750,000 per manufacture (aka, $1.5M for his two studies), and is not covered by insurance since it is not “standard of care.”
If we wanted to try and obtain a special approval to have CAR T local in Denver, the hospital required we deposit $1M.
$1M!
As. a. deposit.
So for 24 months we have traveled to CHOP. We have flown there 15 times, as well as the one time we drove across the country. That is what the studies required.
For obvious reason, like procedures that must be done on-site, for a spinal fluid sample that is too fragile to ship across the country. But other times, like now, it is to have the labs drawn and to have an exam done by the sponsoring facility. Labs and an exam that can be done, with precision, 40 minutes from our house. But those would be local results that wouldn’t have been performed “by the study” and so they aren’t ideal.
So we’ve traveled to Philly.
A flight there and back in February 2021, a flight there March 2021- a flight there and back in April 2021, a flight home in May 2021, a flight there and back June 2021, a long drive in August 2021- a flight there and back in between and a long-ass drive home in September 2021, a flight there and back in November 2021, a flight there in January 2022 and three long weeks, then a flight home, a flight there and back in May 2022, and a flight there and back in August 2022.
February, March, April, May, June, August, November, January, May, August.
We’ve seen a lot of that flight path.
We’ve paid for a lot of flights.
Accommodations have been covered by the study, but no other travel costs. Nor the costs that rack-up when you manage two households at once. Nor the costs that you don’t consider like eating out in a big city after a long, exhausting day in the hospital. Nor the cost of the rental car you get on a whim and end up quite grateful for so you aren’t stuck within walking distance for your 6-week stay. Nor, for example, the cost of therapy for your other young children because it turns out leaving them for weeks on end does a real number on attachment.
We have spent, rough estimate, $20,000 on out-of-pocket expenses associated with our time in Philly.
And we are the lucky ones!
There are no bootstraps in pediatric cancer. Just fucking luck.
The Ones Who Had $20,000 to Spend
The ones who had $20,000 to spend!
The ones who could flex and bend, but not break while money poured out every damn credit card and savings account.
The ones who could stay housed, and employed, and financially solvent while hemorrhaging money at every turn.
(This doesn’t account for our $7,000 annual out-of-pocket insurance per person max, nor the >$5,000 we spent in 2021 alone on integrative care. Nor all the costs that came in the 3 years prior, since original diagnosis in 2019).
CAR T clinical trials should not only be available to those with 6-figures in their savings account.
What I am wrestling is, “What is our moral responsibility to stay in the trial at this point?” and perhaps, not to withdraw completely, but to cloud up their data by sending them lab results performed locally rather than traveling to have them done on-site?
I’m pulled between two feelings.
First:
FOR THE LOVE OF ALL THINGS HOLY can we NOT GO TO PHILLY AGAIN, EVER! Send the labs from Denver, for goodness sake, they are the same labs!!! Why! Why! Do we have to keep traversing the country for this?
But the other, far more generous in spirit, whispers:
To have a choice is a privilege. A choice to travel because Beau is alive and we do have the money for it. The privilege to keep giving back for those who can’t.
We’re Here, God, Send Us
Im reminded of the night we finally decided, like decided in the way where your head lines up with your heart, that CAR T was the path we’d take.
It was scaring and horrifying, and oh so easy to forgot on this side of things, what making that decision was like. Joshua and I were both wrecked by it for weeks.
The experimental nature of things.
The unknowns.
The fine print that listed things we couldn’t bare.
As parents of a child with cancer we had both been thinking about it non-stop. But as a married couple, we hadn’t discussed it together. I think both of us afraid to be the first to offer our child up to science. One evening I said to him, “Despite it all, I have a peace that this is our path.”
“It’s the closest I’ve ever been to ‘a peace the passes understanding,” he nodded in agreement.
“Imagine if this happening to us, and then us choosing CAR T, just imagine if it allows other kids to have access to better treatment?” I offered.
“Imagine if we pave a way where kids don’t have to do three years of toxic chemotherapy,” he added.
“If there is a way for that, we have to participate.”
My faith had been all over the board since diagnosis and relapse didn’t help, but that night, while brushing my teeth, I remember looking in the mirror and thinking, “We’re here, God, send us.”
A Commitment to the Children Along the Way
In spite the voice inside me that kicks and screams like a toddler at having to spend one more dime on this- a much more tender and sweet side of me whispers: It’s a privilege to honor the commitment we made to furthering this science.
The commitment that swirls inside me isn’t a commitment to the team running the study at CHOP. If it was between us and them, I would say, “Thank you kindly, and now here is your cross-the-country blood sample.” But it’s not about us and them. It never has been.
The commitment we are honoring is the one that we made, as a family, to the children who this science will serve down the road.
It is a commitment to the kids and families for whom the science wasn’t good enough for, yet.
It’s a commitment to our Sweet Emily.
We want studies about CAR T to be clear as day, without confusion over where the samples were drawn.
We want to be in the clinic room, speaking to the team face to face, so that they can consider every possible reason why this science works for some, but not for all.
We want this treatment to be made available to all children, to be deemed safe and made cost effective and to become the standard of care.
CAR T needs a chance at being standard of care so children everywhere can have access.
Send Us
When Beau was diagnosed with Leukemia in January of 2019, I would have given anything for a less toxic path. To be able to move this forward, is forever, a gift.
I get wrapped up, swimming in the numbers of our budget, the money we have poured into this unexpected life.
And yet when I type it out and see the words on the page the decision is not only clear, but really not a decision at all.
It’s a movement towards what we are meant to be, towards being fully fucking alive as I mentioned in my last post.
We’re here, God, send us. With survival we didn’t earn, send us.
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