Facing rare case of early Alzheimer’s, health insurance said woman was too young for treatment
By Ben Simmoneau
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BOSTON (WCVB) — Alzheimer’s is not a disease you expect in your thirties. But after getting that devastating diagnosis, a Massachusetts woman then had to fight her insurance company, which said she was too young for the treatment prescribed by her doctor.
Her family believes the insurance based the denial on an arbitrary age limit, which has nothing to do with the effectiveness of the medication. They’re now speaking out about their experience to encourage a policy change.
When Haritha Sudanagunta started experiencing memory and speech issues in her mid-thirties, there was reason to worry.
“She’s a lawyer. (She has) bioengineer training. Trivia Wiz. She was on Jeopardy,” her husband Robert MacLean said.
But it would take several years to get a clear diagnosis. When the family did, it was devastating: Alzheimer’s disease.
“I think it was shock, right? And grief,” MacLean said. “Your world falls down when you hear something like that.”
But still, there was hope. A pair of new medications, lecanemab and donanemab, are now on the market, which can slow the advance of Alzheimer’s by targeting the buildup of amyloid plaque in the brain that impairs cognitive function.
Sudanagunta’s doctor, Dr. P. Monroe Butler at Brigham and Women’s Hospital, said one of the new medicines, donanemab, which is marketed under the brand name Kisunla, is the right fit for her.
“These infusion therapies actually dissolve the amyloid — the Alzheimer’s plaques — and slow the disease down modestly, but it’s the first time we’ve been able to do that,” Dr. Butler said. “Early onset Alzheimer’s is when the symptoms begin before 60, and that’s about five or 10% of patients. But it’s not typical to start in our thirties.”
Drug maker Eli Lilly said studies showed donanemab can reduce plaque buildup by up to 84% for patients with mild dementia symptoms. It comes at a cost: $32,000 for one year of treatment. But Sudanagunta’s insurance denied the request for her to receive it.
“They primarily cited Haritha’s age,” MacLean said. “She was too young for the drug.”
In their denials, which arrived in the span of just a few weeks last fall, Wellpoint Insurance repeatedly said Sudanagunta needed to be at least 60 to take the drug. But the company didn’t explain why, and it’s something Butler strongly disagreed with.
“The earlier we’re able to start treatment, the better the results are that we’re seeing,” he said. “Time is brain.”
Butler also said the insurance company denied him advocating directly on Sudanagunta’s behalf, something known in the industry as a peer-to-peer authorization. Like many health insurance decisions, the age requirement felt arbitrary to the family. And perhaps it was.
MacLean noticed that Wellpoint’s age range for donanemab — 60 to 85 — just happened to exactly match the age of participants in the drug’s clinical trial. But there was no such age restriction when the FDA actually approved the drug for patient use.
“The FDA’s approval of the drug … did not have age as a requirement to take it,” MacLean said.
So he went to work, contacting his employer’s benefits manager, their elected officials and the media — anyone he thought could help. And it worked. Wellpoint reversed its decision without any explanation to the family.
But Sudanagunta and MacLean believe the process is still broken. It’s too opaque and inflexible. They hope that by speaking up, Wellpoint will change this age limit for the next patient who needs this medication.
“It’s a difficult process to go through when you’re facing what’s probably the hardest news of your life,” MacLean said. “To be offered medicine, to be offered treatment, to be offered hope, and then to have that taken away.”
In a statement, a Wellpoint Insurance spokesperson said that because Sudanagunta’s “diagnosis is rare for her age, there was limited clinical evidence to guide an initial decision,” but pointed out that after further review, the company did approve the medication.
The spokesperson said they are “committed to supporting her to the full extent of her coverage.”
It’s a good reminder that if you get denied by your health insurance, it’s worth exploring every avenue to appeal that decision and ask your doctor for help.
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