Missive from Aspen
I was thrilled to be named a 2017 Aspen Ideas Festival Scholar, an honor that allowed me to engage in critical discussions with health professionals, policymakers, industry leaders, and advocates from across the country at the 2017 Aspen Spotlight Health Festival. Below are a few thoughts relevant to the work of UsAgainstAlzheimer’s and our efforts to advance patient and caregiver-centered solutions to our nation’s pressing Alzheimer’s challenge.
Patient powered everything…
From genetic data to end-of-life planning, several discussions at Spotlight Health focused on the need to collect, evaluate, and integrate patient data and preferences into our health care systems. Jack Bailey, President of US Pharmaceuticals for GlaxoSmithKline, highlighted the potential of precision medicine to help develop and deliver treatments at the precise moment they will have the greatest impact. Ken Davis, CEO of Mount Sinai Health Systems, called for a global regulatory framework to speed the drug development and approval process, particularly for generics.
Unfortunately, few of the sessions outlined concrete recommendations and case studies for engaging communities in cutting-edge research and personalized health. This omission underscored the importance of UsAgainstAlzheimer’s efforts to bring research opportunities directly to communities via collaborations with Antidote, a patient-centric clinical trial search platform, and A-List for Research, a virtual gateway to a constellation of innovative initiatives that makes it easy consumers to influence and participate in Alzheimer’s and brain health research.
Memorable quote:
Care & Support for Families Now
All the conversations on care support concluded the same thing: we must do a better job of supporting family caregivers and integrating them into our health care system. And, faced with a massive family caregiver shortage over the coming decades, there is an urgent need to ease the hardship of caregiving through smart public policy (e.g. Hawaii’s CARE Act recently signed into law) and by creating viable economic pathways that make caregiving a sustainable role. According to Bruce Chernoff, CEO of the Scan Foundation, “We must pay paid caregivers more.”
During a dinner hosted by The John Hartford Foundation, Scan Foundation, and the Commonwealth Fund, a small group of us, facilitated by the dynamic Judy Woodruff, were asked to reimagine our healthcare system for an aging America.
Themes that emerged included scaling existing care support models, community-based capacity building around aging, and reducing un-necessary medical procedures in late life. I highlighted the need for a goals-based framework to force action on these issues and the potential of the Research Summit on Dementia Care to move us in that direction.
Memorable quote from the caregiving track: “We have to move from a cowboy culture to a culture of caring.” — Anne Tumlinson, Founder/CEO of Daughterhood.
The neuroscience of poverty
One of the most interesting sessions in the brain track focused on the relationship between the stressors of poverty and brain development. The panel highlighted research that suggests differences in family, income, education, and geography are directly correlated with early childhood brain development. In fact, new research from the University of Wisconsin suggests that the stress of poverty and racism increases the risk of Alzheimer’s and dementia among African Americans. This is an area I’ve written about before and provides an important framework for understanding and addressing brain health disparities through public health programming and policies.
Memorable quote from the brain track: “Rich kids have a bigger hippocampus.” — Martha Farah, Director of the Center for Neuroscience and Society at the University of Pennsylvania.
