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ALS Patients Lose Time Waiting For Insurer Approval

Photo by Heidi de Marco/KHN

Sarah Benoit has been waiting for her insurance company to approve the drug her doctors tell her could help slow the progression of her ALS. The drug, called Radicava, was approved by the FDA and prescribed by her doctors. However, her insurer Blue Cross of California will not approve the medication, STAT reports.

Like an untold number of ALS patients, Benoit faces a conundrum. She can’t afford the $145,000 price of the drug without insurance, but her insurance provider has denied access to the drug, even though it was approved by the Food and Drug Administration last fall for all ALS patients. And as time goes by, Benoit knows that she is losing a chance to delay the inevitable.

Benoit can tell her disease is slowly progressing. Since she was diagnosed 6 years ago, common tasks like holding a pen or washing her own hair have become more difficult. Benoit is frustrated that she is being blocked from something that could benefit her quality of life.

“I do understand that it’s business. I’m realistic. The drug company wants money to cover research, which we need and I support,” she said. “And the insurance company wants to keep costs down. I get all that. But I am shocked at the cost. There’s no two ways around it. And the last thing an ALS patient needs is hoops to jump through. Everyone is wasting valuable time talking to insurance companies.”

Radicava’s clinic trial showed that could slow the decline of function due to ALS by about 33 percent. It is the first new ALS treatment approved by the FDA in 22 years.

But for some ALS patients, the excitement has given way to frustration and bitterness as they encounter roadblocks to obtaining the drug. Over the past few months, a few patients have responded by creating online petitions to shame insurers. Others visit a Facebook page devoted to Radicava, where questions about cost and insurance coverage are interspersed with advice about usage and side effects.

While insurance companies deny medications and treatments for a number of reasons, experts say the response to Radicava has been unusual.

“Typically, what’s going to happen is carriers will follow guidelines associated with FDA approval, but they have the ability — if patients don’t meet criteria — to deny coverage,” said David Dross, the managed pharmacy practice leader at the Mercer benefits consulting firm. “But I haven’t seen that to a great extent. It does seem unusual if FDA approval was that broad.”

To get approval, Benoit’s insurance is requiring her to pass a rating scales test, which is not used in the US.

“It’s a piece of information that we can’t give them, because we don’t use that scale in this country,” explained Dr. Jeffrey Rosenfeld, a neurologist at Loma Linda University. “It was tested in another country so we have no experience at all with this drug. So when I get a denial, I will point out the FDA didn’t approve the drug with stipulations.

However, many patients are finding themselves caught by their insurers’ stipulations. The longer the appeals process takes, the more the patients have deteriorated and making them less and less able they are to pass those tests.

This perplexing approach to coverage infuriates not only patients, but also health care providers.

Dr. Kenneth Patric, a member of Blue Cross Blue Shield Tennessee’s medical policy committee, believes that insurers have the right to deny patients medications or provide stipulations. Still, he admits that there are flaws in the system:

“I think our approach to the whole health care system in the U.S. sucks. In a different setting that’s not so profit driven, the rationale would be different and you’d have a different answer” for Radicava, he continued. “But it’s a money-driven system.”


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