USA2 SPOTLIGHT

An October 26, 2019 The Wall Street Journal article [log-in required] quoted UsAgainstAlzheimer’s advocates (UsA2 Board member) Greg O’Brien and Geri Taylor, highlighting “friendship divorces,” which can accompany an Alzheimer’s diagnosis. 38% of people with dementia in the US report feeling avoided, ignored and ostracized in their social lives, while stigma surrounding the disease persists. According to the article, “The friendship divorce goes both ways, says Greg O’ Brien, a 69-year-old journalist who was diagnosed with early-onset Alzheimer’s about nine years ago and lives on Cape Cod. He’s lost friends, who he says slip away because they are afraid and don’t know what to say. He has also walked away from some. “I don’t spend time with people who don’t seem to understand the journey. I don’t judge them or hate them. I just stay away from them,” says Mr. O’Brien.”

The A-LIST Pulse of the Community Fall 2019 Issue Brief presents “What Matters Most” findings on dementia’s effects on travel and ‘loss of self’ feelings. “A new UsAgainstAlzheimer’s A-LIST® survey shows how Alzheimer’s disease can be isolating, with both people with dementia and caregivers cutting back their travels and vacations because of concerns about traveling with the disease, and whether the costs of vacation would lead to less money for future care costs. This survey provides key insights at a time when millions of families are making plans for one of the nation’s busiest travel periods: Thanksgiving through New Year’s. At the same time, in a new “loss of self” A-LIST® survey, about three-quarters of those living with the disease, caregivers and others concerned about brain health talk about their loss of independence and control over daily activities from a diagnosis, and two-thirds talk about challenges of isolation and the loss of a social life.”

MUST READS

An October 28, 2019 STAT First Opinion piece by Ted Whitford, who worked on Biogen’s aducanumab, wrote about his reaction to last week’s announcement. “When I learned last week that Biogen had completed a retrospective analysis of the aducanumab data — the same data that seven months earlier the company had said justified stopping work on the drug — I thought of my father, my friend, George Scangos, and people around the globe with Alzheimer’s, ALS, and other diseases for which there are no cures. I hope that Biogen made a mistake in its futility analysis back in March. But if it didn’t, and this is another example of the American public watching big pharma trying to spin bad data, then I can’t help but wonder if Biogen, and perhaps the industry, has lost its way.”

An October 27, 2019 Boston Globe article spotlighted the story of renowned lawyer, civil rights activist and theorist, former Harvard Law professor Charles J. Ogletree Jr. Ogletree’s wife, Pam, is by his side every step of the way as he navigates his current challenge - a diagnosis of Alzheimer’s disease. He went public three years ago and vowed to fight. According to the article, ““I want to focus on what I have,” Charles told Pam when he was diagnosed, “not on what I’m losing, or on what I had.” They pledged to stay in the moment, savor it. To spend their time living. And so as his world closes in, she pushes back.”

An October 24, 2019 Time Magazine article by NIH lead Dr. Francis S. Collins both celebrated past NIH achievements and looked to the road forward, including genome editing and mapping the human brain, pondering questions about ethics and equity. The NIH-led BRAIN (Brain Research Through Advancing Innovative Neurotechnologies) Initiative was created “to spur progress in neuroscience, much as the international Human Genome Project did for genetic research. Such understanding will open new avenues to treat Alzheimer’s disease, autism, depression, epilepsy, Parkinson’s disease, schizophrenia, stroke, traumatic brain injury and many other neurological disorders.” “We look forward to the time when the long arc of scientific discovery finally makes it possible to vanquish many of the chronic diseases that devastate far too many lives today,” wrote Collins.