Nearly 16 million Americans are taking care of someone with Alzheimer’s disease – and the cost of caring for someone with the disease goes far beyond the financial. The urgent necessity to overcome these challenges was a topic of discussion during the Biotechnology Innovation Organization (BIO) International Convention in June.
One of the major problems with Alzheimer’s is that regulators think patients “aren’t that sick.” In fact, Alzheimer’s disease is insidious in the way that no one really knows when it started. Unlike classic amnesia, Alzheimer’s has a slow progression that cannot be pinpointed, and it ends in complete dependence for the patient, said experts during a panel session, “Alzheimer’s: Tackling Scientific and Systemic Challenges to Change the Future of Alzheimer’s Care.”
Sponsored by Genentech (a member of Roche Group), the panel was moderated by Neurotech Reports editor James Cavuoto. He was joined by field leaders Soeren Mattke, Professor at the University of Southern California, Russ Paulsen, COO at USAgainstAlzheimer’s, and Dheeraj Talreja, Executive Director of Genentech.
Alzheimer’s disease is the cause of approximately 600,000 deaths a year, “which is basically COVID, but we don’t treat it as such because it’s almost invisible, because it mostly happens to older people,” said USAgainstAlzheimer’s Paulsen. He added that the disease “floats under the radar, but the desperation is real for those 600,000 families.”
Patients with Alzheimer’s can live a long life, and that is simultaneously the good and the bad thing. On the one hand, the risk of sudden death is low. However, according to University of Southern California’s Mattke, patients “wither away.”
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“It is a large public health crisis,” said Genentech’s Talreja, who urged patient advocacy groups and industries to come together as a society and work on solving the crisis.
The economic cost of Alzheimer’s is another challenge. In terms of medical costs, treatment is rather affordable. However, from a social care aspect, the financial burden on families is colossal, with caregivers and nursing homes being very expensive and not covered by insurance.
And like many diseases, Paulsen argues, poor people are much more likely to get Alzheimer’s disease.
“The U.S. healthcare system is not ready for this, because Alzheimer’s is a disease that is under-detected, under-diagnosed, under-treated, under-discussed,” Paulsen noted. “And we can’t treat a disease when the system looks away.”
Panelists agreed that complex diseases will require complex treatments, and setbacks will always be a part of the journey. However, focus and persistence are key.
Ensuring adequate access and coverage in a broad and equitable way, as well as chasing cooperation from stakeholders is the biggest challenge – but working together as a society is key – the panel concluded.