Alzheimer's disease (AD) is one of the most significant healthcare crises of the 21st century. AD patients experience a progressive loss of cognitive and behavioral abilities and suffer premature death. This disease imposes a vast social and economic burden on society and extracts a heavy emotional toll from caregivers. The global cost of AD exceeds 1% of worldwide GDP and the number of AD patients in Europe alone is expected to double by 2050. Yet there remains no cure.
While new diagnostic tools promise more accurate and earlier diagnosis of AD, diagnosing a disease for which there is no cure creates critical reimbursement and ethical challenges. Health systems struggle with managing patient care and the associated short- and long-term costs, while patients still face the stigma of diagnosis. All acknowledge that no single nation or agency can address the rising tide of AD.
A public-private collaboration, the Alzheimer's Disease Working Group (ADWG) addresses the need for greater clarity in the development of AD. The group brings together key thought leaders and decision makers, including medical and health economic experts, regulators, payers, patient/policy representatives and industry. Working together through 2013, participants are committed to moving the AD field forward and pragmatically preparing health and social systems for new approaches.
Recent Working Group topics:
Healthcare stakeholders increasingly recognize that the scientific and economic challenges associated with Alzheimer’s disease (AD) are simply too great for individual stakeholder groups to address solely from within their own silos. In the necessary spirit of collaboration, members of the the Alzheimer’s Disease Working Group present their set of multicountry, multistakeholder recommendations to improve the organization of existing AD and dementia care and the development of new treatments in the journal Alzheimer’s & Dementia.
ADWG participants see value in the considerable breadth of stakeholder views represented amongst this group. At the close of the meeting in Amsterdam in February 2013, participants decided to broaden the group's impact by co-authoring a set of recommendations to improve the delivery of AD care and the development of new AD medicines. An industry participant remarked: "If implemented widely, these recommendations provide an environment in which it will be easier to launch new interventions and evaluate them."
The Alzheimer's Disease Working Group reconvened in London in October 2012. Although the group was optimistic about the future of clinical research on earlier stage AD patients, it also echoed the sentiment of a clinical expert: "We cannot keep hoping for a wonder drug." Instead, participants focused on frameworks for diagnosis and care pathways that would serve both current and future patients. The group also considered how best to "bridge the gaps" between regulatory endpoints and reimbursement requirements for HTAs and payers.
Participants gathered in Paris in June 2012 for the launch meeting of the Alzheimer's Disease Working Group. Participants focused on defining the challenges in early diagnosis, developing a standard of care, and demonstrating the value of new AD approaches. All agreed, "AD is under-managed today and more could be done. Disease-modifying drugs will change the paradigm of AD treatment and early diagnostic testing. An approach should be developed now to meet these needs." Participants identified and prioritized opportunities for the Working Group to make progress in AD.
Alzheimer's Disease Working Group
Professor of Primary Care & Ageing, Newcastle University