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New Alzheimer’s drugs raise hopes and a big question: Who’ll pay for them?

The Alzheimer’s Association is stepping up public pressure on the Biden administration, hoping to convince the government to pay for a new class of promising but expensive Alzheimer’s drugs.

To date, the advocacy group’s campaign has been intense but low-tech, featuring everything from critical statements in the media to a public rally in front of the White House.

But the long-term results of the dispute, whatever they turn out to be, won’t be so quaint.

About 6.9 million Americans currently have Alzheimer’s, a progressive, deadly disease that’s incredibly expensive to manage, and millions more are expected to be diagnosed as the nation’s population ages up. Many Alzheimer’s patients need years of care as they lose their cognitive abilities, and the three drugs in question, Leqembi, Aduhelm and Donanemab, show signs of slowing that mental decline for a few months to a year – at an annual cost of $25,000 to $30,000.

For families of people affected by Alzheimer’s, federal insurance could be essential for getting the drugs and the window of normal living they might provide. For working-age taxpayers asked to foot the bill, that same insurance could start in the billions and run up for decades.

So far, the Centers for Medicare & Medicaid Services (CMS), the federal agency that sets coverage policies for the biggest federal insurance programs and often influences the private insurance market, has balked. Agency officials note that the three drugs aren’t insurable, for now, because they’ve been granted “accelerated,” not “traditional” approval from the Food and Drug Administration, and because the drugs haven’t yet demonstrated that they are “essential” for patients.

 

At least one of those conditions could change in early summer. The FDA is slated to issue a decision on granting full, traditional approval to Leqembi as soon as July 6. Many observers suggest that ruling eventually could pave the way for getting all three drugs to market.

Until that ruling is announced, officials with the Alzheimer’s Association say they plan more protests – including one in Los Angeles in June – as a way to remind officials from CMS, and inside the White House, that the public is watching.

“We’re looking to make sure the voice of people who might benefit are heard. In March, we held a rally in front of the White House. Between now and July we’ll do this around the country,” said Dr. Joanne Pike, president and chief executive of the Alzheimer’s Association.

Few of those voices are louder than Tony Gonzales’. The 49-year-old from Santa Maria has been working with the Alzheimer’s Association since last year, when he was diagnosed with mild cognitive impairment, which he says in his case is a precursor to Alzheimer’s. On May 10, he testified to Congress about why the drugs should be insured by the government.

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