Additional Piece: The Challenges and Implications of Alzheimer’s Treatments
Alzheimer’s disease is a progressive neurodegenerative disorder that affects millions of people across the world. Despite decades of research, there is still no cure for the disease, and treatments are mostly aimed at managing symptoms rather than addressing the underlying pathology.
Recently, there has been much excitement about new drug treatments that target the buildup of amyloid-beta protein in the brain, a hallmark feature of Alzheimer’s disease. Lecanemab and donanemab are two such therapies that have shown promise in early clinical trials, prompting the FDA to grant accelerated approval for lecanemab. However, these new treatments also raise significant ethical, practical, and financial challenges.
One of the major concerns is the limited evidence of the drugs’ safety and effectiveness and their high cost. Lecanemab and donanemab have not undergone extensive testing in large and diverse patient populations and have not been shown to improve cognitive function or quality of life. Moreover, the cost of the treatments is likely to be prohibitively expensive for many patients and health systems. In the US, the cost of lecanemab is estimated to be between $30,000 and $50,000 a year, not including the expenses of monitoring and administering the drug.
Another issue is the potential disparity in access to the drugs. People from underserved or marginalized communities may find it harder to access the treatments due to financial, social, or systemic barriers. Even those who can afford the drugs may face challenges in obtaining them, especially if they live in rural or remote areas with limited healthcare services.
Furthermore, the emphasis on expensive drugs could divert resources and attention away from other important aspects of Alzheimer’s care, such as supporting caregivers, improving community integration, and reducing stigma and discrimination. By focusing solely on drugs, we may miss out on the opportunities for meaningful interventions that enhance the holistic well-being of people with dementia and their families.
Moreover, the pressure to try new treatments may give rise to false hopes or unrealistic expectations. People living with Alzheimer’s already face many challenges and uncertainties, and the hype around new treatments may add to their anxiety or distress. Patients and families may also struggle to make informed decisions about whether to take the drugs, weighing the potential benefits against uncertainties and risks.
Therefore, it is essential that healthcare professionals take an ethical and patient-centered approach to Alzheimer’s treatments. Doctors should engage in shared decision-making with patients and families, respecting their values, preferences, and life goals. Clinicians should also offer clear and accurate information about the benefits and limitations of the drugs, not overselling or understating their effects.
Finally, in a world where health systems are increasingly strained, we need to rethink our priorities and values in Alzheimer’s care. We need a more proactive and compassionate approach that recognizes the dignity and worth of all people affected by the disease. We need to invest in social and community support, education and advocacy, early detection, and person-centered care. We need to listen to the voices of people living with dementia and empower them to shape policies and services that reflect their needs and aspirations.
Such a vision may be ambitious, but it is also necessary and achievable. The burden of Alzheimer’s disease is one of the most pressing health challenges of our time, and we cannot afford to miss any opportunity to tackle it. We need to move beyond the seduction of pills and teas and embrace the power of interpersonal care, empathy, and solidarity to build a better world for all.
Summary:
The article highlights the concerns and challenges surrounding the approval and utilization of Alzheimer’s treatments, particularly lecanemab and donanemab. While the drugs have shown promise in clinical trials, they are expensive and have not been proven to improve cognitive function or quality of life in large and diverse patient populations. The limited evidence, combined with the high cost and potential disparities in access, raises ethical and practical issues for patients, families, and healthcare systems.
Doctors and clinicians are urged to take an ethical and patient-centered approach to Alzheimer’s treatment, providing clear and accurate information and engaging in shared decision-making with patients and families. Rather than focusing solely on drugs, healthcare systems should invest in social and community support, education and advocacy, early detection, and person-centered care to enhance the holistic well-being of people with dementia and their families. The vision is to move beyond pills and teas towards a more compassionate and proactive approach that recognizes the dignity and worth of all people affected by Alzheimer’s disease.
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If medicines have no net benefits for patients, these disparities in access might not matter much in the long run. But a heavy focus on expensive drugs could make it harder to close more mundane gaps in dementia care that disproportionately affect underserved Alzheimer’s patients. In the US, Medicare, the public health insurance program for seniors, doesn’t pay for the caregivers many Alzheimer’s patients need, and communities tend to do a poor job of integrating people with cognitive impairments. These are fixable problems, but there is little power to address them. “There’s something seductive about the idea of a pill or a tea,” says Emily Largent, a bioethicist at the University of Pennsylvania. “It can definitely distract from the idea of interpersonal care.”
It’s been nearly half a year since the FDA granted accelerated approval for lecanemab, but until now, the drug has been nearly impossible to obtain. That is likely to change soon: the FDA will meet to discuss a full approval for lecanemab next month. (Approval is still pending in Europe, and in the UK it will also have to pass a cost-benefit test to be offered by the National Health Service.) Despite the risks and difficulties involved in care, doctors plan to offer lecanemab, and later donanemab, to patients who want them. “We are not in the business of destroying hope,” says Schneider.
That being said, doctors have an essential role to play in helping patients decide if these drugs are right for them. Clinicians will have to navigate the limited data available to explain the results patients can expect. It will then be up to patients to decide whether the potential benefits outweigh the costs in time, money and health.
People may be willing to take serious risks for the chance to curb their disease. For patients and their families, the diagnosis of Alzheimer’s evokes images of weakness and incontinence, of deep emotional wounds unintentionally inflicted on loved ones, of losing oneself within one’s own mind; it has been called “death before death” When faced with such a fate, a Hail Mary treatment may seem appealing. Howard says that he has had patients tell him that they would do anything to fight the disease, even if he kills them.
But candidates for anti-amyloid therapies are so mildly disabled that they can usually maintain their pre-Alzheimer’s lifestyle for a period and can live for a decade or more with their disease. If they are elderly, there is a good chance that something else will kill them before Alzheimer’s. The idea that a life with Alzheimer’s is worth so little to make any treatment worthwhile may be widespread, but it erases the rich lives that people with memory problems lead.
That only adds to the tragedy of every death caused by lecanemab and donanemab. “People with mild dementia, even moderate dementia, can live extremely full and happy lives,” Howard says. “Those people who died in those trials, those [were] people in the very, very early stages of their dementia. They still had years of reasonable life ahead of them.”
Updated 5-24-2022 at 12:00 p.m.
https://www.wired.com/story/alzheimers-drugs-benefits-risks-lecanemab-donanemab/
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