As a past caregiver for twenty years of both parents affected by Alzheimer’s disease, I have a keen interest in Alzheimer research. I was so disheartened to read the hype-filled comments in a recent Toronto City News article about Donanemab, a new unproven and unsafe Alzheimer drug, made by Eli Lilly. Equally disturbing, the article includes false information provided by Kyle Fitzgerald, a spokesperson for the Alzheimer Society of Ontario.
The article references research that the Alzheimer Society of Ontario recently commissioned showing that if a disease-modifying therapy like Donanemab came to Ontario, the wait time to receive a diagnosis would be seven-and-a-half years. Toronto City News then cites Fitzgerald stating, “That’s longer than many people who seek a diagnosis will live and far too long to make effective use of treatments.” I don’t know how the Alzheimer Society calculated that wait time to receive a diagnosis, but most people I have known with this disease, over the course of my professional life, and I have known plenty, have received a diagnosis in much less time. Often, they were a danger to themselves and others or were incapable of taking care of themselves and needed care services. To obtain these care services, you need a diagnosis.
Fitzgerald also told the publication that most people in Ontario do not get a definitive diagnosis of Alzheimer’s disease; rather, they get a probable diagnosis through the completion of a memory or cognitive assessment. He then states: “They don’t actually get, nor could they get, a publicly-funded PET scan to confirm that diagnosis. If and when we have pharmacological interventions or treatments, we would need to radically scale up our pet scan capacity to confirm … the likely pathology of Alzheimer’s disease….” (bold-face added).
The statements I have bold-faced are misleading; and coming from the Ontario Alzheimer’s Society’s Director of Government relations, extremely disturbing. He states that a PET scan confirms diagnosis, which is false. A pet scan is a tool that can show the degeneration of brain cells but by no means does it confirm a diagnosis of Alzheimer’s disease. A simple internet search can find these facts. See, for example, the Mayo Clinic website, which posts the following information: “Scans aren't used to diagnose the condition because there is overlap in what doctors consider normal age-related change in the brain and abnormal change.” Brain scans are used to eliminate other diseases and disorders and for screening purposes to determine eligibility for new Alzheimer drugs, whose worth is suspect (see my comments, further below).
Fitzgerald puts forward an agenda on behalf of the Ontario Alzheimer Society designed to push governments to spend scarce health care dollars on PET scans of limited worth. PET scans are expensive. They may come in handy for research purposes but not as a diagnostic tool to be added as a matter of necessity to our already shrinking basket of publicly-funded Medicare services. Another reason to promote PET scans is that they are needed to diagnose the severe side effects of the new Alzheimer drugs, such as brain swelling and bleeding. The worth of new Alzheimer drugs similar to Donanemab is highly questionable as attested by many scientists, such as Derek Lowe, Adriane Fugh-Berman and Gregg Gonsalves. Like me, Gonsalves, a professor of epidemiology at Yale, became an experienced caregiver. One of his parents and both of my parents developed Alzheimer’s disease. Dr. Carmela Tartaglia, a cognitive neurologist who is also quoted in the article, states that the drug would “buy an extra six months” for persons with this disease. But the disease’s symptoms are variable and fluctuate unpredictably, so I find the touted benefits very questionable. Having twice had a front row seat observing how this disease progresses, being personally at risk for the disease and having interviewed countless caregivers professionally over the course of many years, I find the six month difference touted by Dr. Tartaglia laughable, if it weren’t so offensive.
Evidence that these drugs have value in the lives of people with Alzheimer’s and their families has yet to be put forward. It is doubtful whether they will make any tangible difference. What would make a difference would be to add new dollars to the health care system to bring relief to families that shoulder caregiving responsibilities. It is well established that caregivers suffer serious physical and mental health consequences from the burden that this disease imposes. Providing long term care services to caregivers would go a long way in reducing these consequences. These care services would also improve the care that those with Alzheimer’s receive, by providing them with a personalized care that promotes quality of life, to the degree possible. Without a doubt, providing long term care services would be much more cost effective at improving quality of life than drugs like Donanemab.
Fitzgerald said he expects Donanemab will be submitted to Health Canada within the next six to 12 months, and the Alzheimer Society is fairly confident it will be approved (bold-face added). Where does he get his confidence? From cozying up to Health Canada? Or, more likely, cozying up to Eli Lilly? According to the list of donors in their 2022-23 Annual Report, Alzheimer Ontario receives donations from pharmaceutical companies, including Biogen, Eisai and Roche, key players in the race to market drugs similar to Donanemab. These donations compromise Alzheimer Ontario’s credibility. One can only speculate whether the organization expects or is courting a donation from Eli Lilly. The information Fitzgerald is spreading about PET scans shamelessly serves as excellent promotion for these new drugs.
The article in the Toronto City News endorses the use of expensive tests paid by the state and, unjustifiably strokes the public’s fear and outrage, all to create a market for the new Alzheimer drugs. Unfortunately, I have witnessed a long history of disappointment with regard to approved Alzheimer drugs. The hype in this article is the same as when previous Alzheimer drugs were introduced to market many years ago. They do little, if anything, to improve the lives of those affected by this horrible disease but make loads of money for the pharmaceutical companies and their shareholders.