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U.S. Rep Buchanan pushes to make Alzheimer's treatment accessible
Kimberly Kuizon reports
SARASOTA, Fla. - More than 6.7 million Americans have been diagnosed with Alzheimer’s, and 55-year-old Michelle Hall of Bradenton is one of them.
"I tell people all the time I look normal, but I’m not normal. People don’t understand that," she said.
Hall, a mother and wife had a powerhouse legal career when she was diagnosed with Alzheimer’s disease. A clinical trial gave her hope.
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"I couldn’t spell my name and then all of a sudden one day I could spell my name," Hall said.
The treatment she received, Aduhelm, was approved by the FDA, but restricted by The Centers for Medicare and Medicaid Services (CMS).
"The whole Alzheimer’s community was shocked and infuriated because there are millions of people like Michelle who should have access to these drugs," said her husband Doug Hall. "She has access because we were at USF with a doctor, and it was a happenstance of timing."
CMS restricted access to Aduhelm and similar drugs, citing concerns for complications such as brain bleeds. Treatment out-of-pocket costs upwards of $27,000 a year.
Doctor's showing how Alzheimer’s affects a person's brain as they get older.
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"It’s something I am going to do everything I can from my standpoint to make a difference," said Congressman Vern Buchanan.
Buchanan has introduced the MERIT Act, or Mandating Exclusive Review of Individual Treatments. He hopes this would ensure coverage of potentially life-saving drugs.
"As someone who has dealt with it, in the family closely with my father and seeing what families go through and challenges the patient goes through. We need these drugs, and we need them now. And need to make them available," said Congressman Buchanan.
Dr. Clifton Gooch, the chair of The University of South Florida’s neurology department, applauds the act.
"One hundred years we’ve been waiting," he said. "The moment is here, but CMS has said we are putting up a barrier or hurdle for you. The drug is there, but you can’t have it."
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Dr. Gooch said every day that passes, is another day memories slip away from those who need treatment. For them, it’s a race against time.
"About 2,000 patients will progress from the mild form of the disease, where these drugs work best," Dr. Gooch said. "To the moderate to severe form of the disease where the drugs may not work at all."
CMS said they do not comment on pending legislation but released the following statement to FOX 13:
Alzheimer’s disease is a devastating illness that affects millions of Americans and their families. The Centers for Medicare & Medicaid Services (CMS) is committed to helping people get timely access to treatments and improving care for people with Alzheimer’s disease and their families.
A drug in this class, monoclonal antibodies directed against amyloid for the treatment of Alzheimer’s disease, is covered by Medicare if it meets the criteria of the National Coverage Determination (NCD), which is based on accelerated approval by the FDA. The NCD may be found at https://www.cms.gov/medicare-coverage-database/view/ncacal-decision-memo.aspx?proposed=N&ncaid=305.
Because of the early evidence and the immense burden of this devastating disease on the Medicare population, the Medicare NCD provides coverage with evidence development to support rigorous studies to help answer whether this drug improves health outcomes for patients. The NCD includes a coverage pathway for broader access to these drugs if they receive FDA traditional approval. CMS is committed to being nimble when reconsidering this coverage framework in light of any new evidence related to the clinical benefit of this drug, and we continue to encourage clinicians, patients and caregivers to send us relevant evidence.
For additional information, please refer to our statement "Response to Alzheimer’s Association’s Request to Reconsider the Final National Coverage Determination" posted on February 22, 2023.