July 7, 2021 -- Rolfe Johnson is a glass-half-full kind of guy, but also a realist. As a longtime attorney in Houston, only recently retired, he specialized in taking companies public, so he is also a man who knows how to do his homework.
Johnson also has Alzheimer’s disease. So, when his neurologist called to tell Rolfe and Carol, his wife of 60 years, that he would like to prescribe aducanumab (Aduhelm), the controversial new Alzheimer's drug just approved by the FDA on June 7, he didn't hesitate. "I agreed to it right away," he says.
But in true lawyer fashion, he also had a laundry list of questions.
"I certainly wanted to know what he knew about the company, the maker, what their history was," says Rolfe, 82. Assured that the company, Biogen, was solid, he asked other questions about what he could expect from the drug. The couple both expressed concern about the cost -- a staggering $56,000 a year list price -- and were assured that an arrangement was being worked on.
Rolfe had his first monthly infusion June 30.
"There are a number of side effects they warn about, and so far, I haven’t had any of those," he says.
He's keeping his expectations in check. He knows it won't reverse the damage already done since his diagnosis 5 years ago. "If it works well, it prevents the propagation of Alzheimer's," he says, beginning "from when you start taking it."
His wife, 81 and a psychotherapist, chimes in: "That's as good as a cure for us."
As advocates and critics debate the FDA's approval of the new drug, and a chorus of experts and patient advocates protest the price, many patients and their families are excited about it, hopeful that it will stop the debilitating disease from getting worse and help them function and enjoy time with family and friends.
Aduhelm: Sticking Points
The price of the drug isn’t the only point of debate. So is the FDA's accelerated approval, which was based on