Alzheimer’s advocates and families hold rally about access to new treatment drugs

JACKSON, Miss. (WLBT) - June 21 is the longest day of the year. But it’s on this day that advocates call attention to those fighting the darkness of Alzheimer’s.

This year, there’s a new hope that seems just out of reach for most.

”What do we want? Access,” chanted the crowd. “When do we want it? Now.”

They’re referring to access to Alzheimer’s treatment. There’s a long-awaited treatment option, approved by the FDA. But that’s where things are stalled out.

“It is the only drug class ever that’s got FDA approval that the Center for Medicaid and Medicare Services refuses to pay for,” explained State Board Member of the Alzheimer’s Association of Mississippi Rocky Miskelly.

The FDA gave the drug accelerated approval. CMS is now saying it will grant access if it gets traditional approval. But even that could come with restrictions.

“It’s far past time that this discrimination against people with Alzheimer’s ends,” noted Miskelly.

You may have cared for a loved one dealing with the disease. And these advocates say the drug shown to delay the advance of the disease amounts to...time.

“I think my mother and my grandmother who are lost to this disease, and what an extra year would their grandchildren would have meant not only to her but to those grandchildren for the rest of their lives,” said Miskelly.

“Today is personal for me because I lost both of my parents to Alzheimer’s and dementia,” said Rebecca Kinkade. “When my parents passed away, my kids were younger, so they weren’t able to really get to know their grandparents, and grandparents are so important to children.”

Without coverage, the cost becomes a barrier.

“This drug costs about $21,000 to $22,000 a year,” said Miskelly.

Some who have a family history are left wondering if they’ll need the treatment that wasn’t available to their parents.

“It is really, truly shocking to me, that we do have a drug that is available,” noted Kinkade. “And it’s so expensive, that we’re not going to be able to afford it.”

Now, they’re hoping their calls to action will be heard by the government officials they say are standing in the way of access.

The Alzheimer’s Association estimates that each day this CMS policy is in place, more than 2,000 people ages 65 or older may transition from mild dementia to a more advanced stage of Alzheimer’s. And at that point, they’d no longer be eligible for the new FDA-approved treatments.

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