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'You have to have hope': York man begins Adulhelm for early onset Alzheimer's

Foster's Daily Democrat - 9/16/2021

Sep. 16—A York couple became the first in New Hampshire to receive a new, much-debated Alzheimer's drug last month.

Aduhelm, approved by the FDA for the treatment of Alzheimer's disease, does not have the complete confidence of the medical world. Critics say the drug, made by Biogen in Cambridge, Mass., was approved too soon, without proper clinical trials, and that there is no proof of claims that it slows progression of the terrible disease. In fact, the Food and Drug Administration has walked its approval back a bit, making it available only to patients with early onset Alzheimer's. Other doctors question its hefty price tag.

"I did my research and we decided why not try it," said Alison Fogel, 52. "We started noticing signs about a year and half ago, when David was only 60, (now 61), small things, but we are too young for this. I would spend every cent of our savings if I had to just for one more year with him. My husband is healthy. He works out. He has no other ailments. We have been together 22 years, and we are not ready. So, if this gives him a chance, we are all in. It's a no-brainer."

David said, "I feel frustrated because I know what I want to say but can't find my words, or I get interrupted and then lose my train of thought. I'm hoping this medicine can stop or slow this disease that is robbing me of little parts of myself. It gives me hope."

Dr. Kent Logan, a neurologist and the owner and director of the Neurology Specialties Practice in Hampton, administered the drug to Fogel. Logan said he is the only provider in New Hampshire, Maine or Massachusetts to offer the treatment at this time.

"My office had the honor of infusing the first patient in New Hampshire with Aduhelm," said Logan. "This is the new, often contested IV medication which was FDA approved for the treatment of mild cognitive impairment and mild cortical dementia. There is now another option to treat these devastating neurodegenerative processes."

According to the FDA, Aduhelm is an amyloid beta-directed antibody that can treat Alzheimer's disease. Aduhelm was approved under the accelerated approval pathway, which provides earlier access to drugs for patients with a serious disease when there is an expectation of clinical benefit despite some remaining uncertainty about that benefit.

In June, the FDA approved Aduhelm (aducanumab) for the treatment of Alzheimer's, a debilitating disease affecting 6.2 million Americans. Alzheimer's is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills and eventually the ability to carry out simple tasks. While the specific causes of Alzheimer's disease are not fully known, it is characterized by changes in the brain — including amyloid plaques and neurofibrillary, or tau, tangles — that result in loss of neurons and their connections, according to the National Institute on Aging. These changes affect a person's ability to remember and think.

Alison said the first signs of David's disease were subtle.

"We note some memory loss," she said. "He had some word issues. He might miss an exit, like the GPS would say take the next exit and he wouldn't. I noticed and he was also concerned."

David's primary care doctor sent him for a CT scan, which didn't show anything wrong, so he went for a neuropsychological exam.

"Tests took months to schedule because of COVID," said Alison. "He was finally diagnosed through an MRI with MCI, mild cognitive impairment. That could be an early sign of many things besides Alzheimer's, including Parkinson and Lewy Body dementia."

On May 3, the couple went to Massachusetts General's memory clinic, where his diagnosis of early Alzheimer's was confirmed.

"A PET scan showed a slow uptake in certain areas of his frontal lobes," said Alison. "Next was a spinal tap to look for the telltale proteins. He was positive for both the TAU and the Amyloid proteins in his spinal fluid."

Logan said he has had his practice for 20 years and when he saw the need to offer this, he did his research and when satisfied, he made it a part of his practice.

"It's easier for us because we are a small practice," said Tempe Penrod, RN. "We can make the decision without going through all the committees, the reviews of a larger institution."

Aduhelm is approved only for patients with early onset of the disease, and Logan said that is the only way he will use it.

"Treating Alzheimer's patients is very discouraging," he said. "This may slow early progression but you cannot reverse damage in later patients. I saw the research and found it intriguing. Biogen saw improvements in patients in their clinical trials."

The treatment is expensive. Alison said they were ready to pay out of pocket, but because they were rejected by their insurance two times, Biogen is picking up the cost for now.

"David was started on a low dose and will be gradually brought up to the full dose," she said. "The first treatment was $1,000 and the cost will go up from there, to maybe about $5,000. We will do whatever we need to to make sure the treatments continue, to make sure David has the best chance he has. Maybe down the road a better treatment, a better drug will come out. Until it does, we will continue this."

Logan said they begin with a dose of 1 mg per kg, increasing over a year to the full does of 10mg per kg.

Aduhelm is the first new treatment approved for Alzheimer's since 2003 and is the first therapy that targets the fundamental pathophysiology of the disease, according to the FDA.

David Fogel was the first, but Logan has done infusions on two more patients since. And he said he has others going through the preliminary protocols.

"We owned a company in Massachusetts and are now retired, early," said Alison. "We are supposed to be enjoying life. We called everywhere and found this only here. I was ready to go to the UK for treatment. Bigger hospitals are still 'reviewing' it. This disease only gets worse, so we do not have time to wait. Is it perfect? We don't know. We know there is nothing else."

The Fogels will take part in an Alzheimer's Walk in York on Sept. 18. They have already raised $6,800 for research.

"You have to have some kind of hope," Alison said. "You could fall into despair. We prefer to keep trying."

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(c)2021 the Foster's Daily Democrat (Dover, N.H.)

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