CITIZEN GREEN: Snüzz is terminally ill, and the treatment that allows him to live and make music is on hold

0
5695
The musician Snüzz has been battling Waldenstrom Macroglobulenemia, a rare bone cancer, for 11 years. Earlier this week, he learned that AstraZeneca is canceling his treatment. (photo by Scott Crowder)

The photograph posted on his Facebook page shows three rows of high-back chairs, upholstered couches and stools arrange in semi-circles around a mic stand and amplifier, waiting for listeners, waiting for sound to fill the air and connect hearts.

But the show will not go on.

Tomorrow, Britt Harper Uzzell, who makes music under the name Snüzz, had planned to hold a concert at his house in rural Stokes County.

Over the past three decades, Snüzz has played in seminal North Carolina bands like Bus Stop and International Orange. As a guitarist, he’s gone on the road with luminaries like Ben Folds, and played with everyone from Jeffrey Dean Foster to Ray “Walrus” Loughran. But he’s also a whip-smart, wry and affecting songwriter and solo artist, not to mention a champion and mentor to numerous musicians in the Triad and Triangle. His song “We’re Better Than This” is one of the bona fide anthems of the “Moral Monday” movement.

About 10 years ago, Snüzz was diagnosed with Waldenstrom Macroglobulinemia, a rare disease.

“It’s a blood cancer,” Snüzz says during a phone interview. “I’ve got a devil that grows in my bone marrow.”

He’s five months into a 12-month prescription for Calquence, a medication made by AstraZeneca that is basically chemotherapy in a pill form. If he goes without it for more than a couple days, his body and muscles ache all over and he can’t get out of bed.

On Sept. 20, after placing a refill order, Snüzz’s shipment of Calquence didn’t come in the mail.

“This week I called them to say, ‘I haven’t received a package; I’m just checking to make sure it got sent,’” Snüzz says. “They said, ‘Oh, your prescription got canceled.’”

After Snüzz and his doctor called to protest, the pharmaceutical company agreed to send a 15-day emergency supply. When Snüzz told them it was unacceptable for them to ship the medication by Monday, Sept. 30, they agreed to deliver it by UPS on Saturday.

Today is Friday, and it’s his first day without medication. He doesn’t fully trust that he’ll have the medication tomorrow. And given the stress of the past week, it just doesn’t seem like a good idea to go forward with the house show.

Then there’s the uncertainty of what comes next.

“AstraZeneca seems to be in chaos,” he says. “They’ve implemented some new system, and they’re having problems. My prescription was canceled. I think it was canceled errantly.”

AstraZeneca did not respond to a phone message left for this story.

Snüzz says he feels gratitude and resentment towards the drug company all at the same time. Blue Cross Blue Shield of North Carolina, his insurer, refused to cover the treatment. He says he “groveled” before AstraZeneca, and they agreed to provide the medication for free. Without insurance, the treatments would normally cost $15,000 a month, and due to the ravages of the disease he’s unable to work and bring in an income.

“It’s a conflicting feeling,” he says. “I’m angry at our healthcare system — the way drug companies charge exorbitant costs. Every other industrialized nation has single-payer healthcare for all. You shouldn’t have to be in a situation where you have to fight to get the therapies you need. AstraZeneca put me through the ringer. But I don’t think I’d be alive right now if not for the medication. No one should have to go through what I’m going through. It’s unfair; it’s cruelty on every level.”

Snüzz has let go of the idea that he needs to be able to perform to feel happy. On good days, he can still find inspiration, sing, play the guitar and record. And for that he credits the Calquence, because there were times in the past when he couldn’t even get out of bed.

“I’m still happy and inspired,” he says. “When I lose the ability to record and play and sing and all that, then it’s going to be a lot harder for me…. I know that’s coming. I have to take it one day at a time. But I already feel like in this life I’ve been a winner. I’m happy and grateful that I was able to do what I’ve done as long as I’ve been able to.”

There is a new song Snüzz has written that he’d like to sing for an audience if he gets another chance. It’s called “Into Visions.”

The verse goes like this: I’m into visions and things others can’t see/ I’m into visions, they’re waiting there for me/ I’m just a conduit, it’s not mine per se/ Cos I’m into visions, I see ’em every day.

Then the chorus opens into an expansive release: I just want to feel a part of something greater than myself, that’s bigger than myself.

He is, no doubt. And his many fans are part of it, too.

UPDATE: In an email sent at 6:57 a.m. today, Snüzz writes, “Calquence allows me to stay just above the cusp of debilitating symptoms. My body has already begun to ache. It always starts in my legs, which I am no definitely feeling without treatment for nearly 24 hours, and radiates through the rest of my body. It’s literally bone ache and while it’s occurring it’s all encompassing and devastating. It feels like game over. I’m anemic and that contributes to my lack of stamina.

“It is with that information that I can give you the good news I’ve received a notification that UPS is bringing a delivery for me today that should be here around 1:30 [p.m.] so hopefully I will be resuming the therapy then.”

At 8:25 a.m., Snüzz followed up to write, “Just in the hours since I last wrote, I can feel a dramatic increase in my pain level. My legs are aching significantly. The pain actually radiates from my butt down through my legs and without treatment will soon overtake my entire body. There is no position I can get to escape or ease the discomfort. It is unrelenting and unforgiving. This is a very familiar place for me.

“Even though many know of my ordeal, this is a private hell. There is simply no way to relay to anyone how much it hurts.”

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.