SPOKANE, Wash. — A Spokane father is facing a devastating choice between financial ruin and his life as he battles an extremely rare disease that requires tens of thousands in monthly medication to keep him alive.
Ryan Becker, father of a one-year-old, was diagnosed with pyoderma gangrenosum around a year ago, but his case defies medical expectations. He is the only recorded case of having all three subtypes of the disease simultaneously.
“They calculated the odds at one in 17.5 trillion,” Becker said. “It’s the equivalent of picking the same grain of sand out of all the grains of sand on the planet four times in a row.”
The rare autoimmune condition causes brain swelling and painful lesions on his skin that require two to five bandage changes daily. The constant pain disrupts his sleep for days at a time.
“It is just pain and agony and it makes it really difficult to sleep,” Becker said. “I go days without sleep until my body shuts down.”
Becker initially found hope when he participated in a clinical trial for Tremfya, a medication that showed significant improvements in treating his condition. However, the clinical trial was canceled, leaving him without access to the life-saving treatment.
Each dose of Tremfya costs over $11,000 out of pocket, and Becker requires two doses monthly to survive. The financial burden has devastated the family’s finances.
“We’re talking $22,000 a month to keep me alive,” Ryan Becker said. “We’ve gone through all my retirement money. I’ve never had credit card debt, anything like this.”
His wife Mikkel describes the impossible situation facing their family.
“It’s a challenge because we want to do whatever we can to keep Ryan alive but there’s also no way that we could physically afford to pay thousands of dollars on top of our living expenses per month to keep him on these medications,” she said.
The Beckers organized a GoFundMe campaign that has raised over $130,000, but they report having already used those funds for Ryan’s treatment. They continue to seek community support to buy more time.
“If participants are willing to risk their body and their life to help them get FDA approval, and the manufacturer continues to make that drug, they should provide that drug for them for the remainder of their life,” Becker said.
For more information and to support Ryan Becker, you can view and give to the family’s GoFundMe by clicking HERE.
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