‘I Never Thought We’d Be at This Point’

Sen. Sanders put out a call for stories from people who have struggled to afford their medication under current policies. Hundreds of people responded. These people’s lives have been turned upside down — not by disease, but by the high prices for the prescription medicines they need, prices that have made their medicines unaffordable, and forced them into life-changing choices. Read the rest here and share your own story here.

Amanda Collins’ husband was only 22 years old when he was diagnosed with a rare form of gout.

“The ER doctor said he was the youngest person he’d seen with gout,” Amanda said.

Luckily, there was a medicine that had good results with gout, Colchicine. It had been around for years, was off patent, and cheap: $4.

“It controlled the gout,” says Amanda. “My husband, James, had a couple short flare-ups a year, and that was it.”

But Takeda Pharmaceuticals bought Colchicine, and after FDA approval TK, re-dubbed it Colkrys, and patented it. The medicine went from $4 to nearly $400 for a month’s supply for James, even with insurance. They couldn’t afford it.

James is now 38. In June, he will have a hearing in a court near Tulsa, on his application for total disability support from Medicare.

“I never thought we’d be at this point,” says Amanda. “We’re a working class family. We both had jobs.”

But by the time James’ health had deteriorated from lack of the critical gout medicine, Cochicine, they had lost everything, and ended up moving from Kansas to Oklahoma, to a house owned by her brother.

“We didn’t even have the luxury of living in our car, because we sold it.” Along with her wedding ring.

Amanda heard that they might get the medicine cheaper in Canada, but she doesn’t want to break the law.

Amanda and James met in high school, married and have three children. But in the roughly 18 months after they stopped buying James’ critical gout medication, he gradually lost his ability to work as a machine operator in a warehouse.

“James came home one day and sat in his car in the drive. My oldest boy and I had to get him out, and carry him into the house, he was in so much pain,” said Amanda.

She can’t work anymore, because James needs full time care. He can’t stand more than a few minutes, can’t get into the shower by himself, basically cannot walk. His diagnosis now is end-stage osteoarthritis, and after surgeries on both his feet, where gout attacks first, he’s largely titanium from the ankles down. And because gout is ultimately a form of systemic inflammation, it can lead to blood clots that cause cardiovascular problems. James knows that because his sister died of the same rare gout at age 36, after a heart attack.

Amanda is angry, not just because of James’ poor health. “We’re now going to be a burden on the system. If he qualifies for full disability, he will get government-supported medical care, and the younger children and I will get checks each month.

“We were working, paying our taxes like everyone else. Now the taxpayers will be paying for us.”