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USA2 SPOTLIGHT
A December 17, 2015 UsA2 press statement announced that European, North American and Asian leaders from industry, government, science and advocacy convened in Lausanne for critical discussions on Alzheimer’s. According to George Vradenburg, “The expertise seen today is both necessary for the rapid delivery of new medicines and for an increased innovative pace in dementia solutions to Alzheimer’s and dementia. Currently, a lack of advanced biomedical tools in the regulatory process, lengthy, fragmented national approval pathways and confusion about the value of Alzheimer’s drugs could all pose substantial challenges to patient access. The goal of the forum was to find innovative processes that surmount these obstacles.”
A December 15, 2016 Runners World article by UsA2 patient advocate Greg O’Brien explored his “race against Alzheimer’s” and his motivation behind running. According to O’Brien, “Before my diagnosis, I ran six miles a day along the back roads of Outer Cape Cod—running at least one of them at a six-minute-per-mile pace. Not bad for a guy then in his late 50s. I ran for the simple love of it; the solitude was soothing, and I enjoyed listening to the caw of herring gulls, the chirp of peepers, the cry of black-bellied whistling ducks. After my diagnosis, the doctors told me that I had to ramp up my running. Physical activity—particularly in late afternoon—helps reduce the end-of-day confusion and restlessness common in dementia patients. Known as “sundowning,” such symptoms are caused as light fades to black. This can also be a time of greater rage, agitation, and mood swings; like dandelions, we behave differently at night, our heads closing up tightly as the sun goes down. So every day before dusk, I ran from the demons of confusion, anger, and ongoing depression.”
MUST READS
A December 17, 2015 The Daily Beast article reported on the progress made in Alzheimer’s research in 2015. According to the article, “Alzheimer’s continues to be one of the deadliest, costliest, and most complicated diseases—but science might be getting closer to finding its cause.”
A December 16, 2015 PineJournal.com article profiled the faces of Alzheimer’s caregivers. According to the article, “Pay isn’t the only factor caregivers working with Alzheimer’s patients should consider. Such intangibles like love received from their patients, or self-satisfaction from doing a critical job well (meaningful to patient and family alike), cannot be measured. I’ve seen intangible bonding first hand at both Evergreen and Diamond Willow.”
Must Watch: A December 16, 2015 Washington Post video segment reported that “Researchers believe they can identify early stages of dementia in observing eye movement patterns and brain activity.”
BUDGET FOCUS
A December 16, 2015 The Kansas City Star article reported that “Sen. Roy Blunt of Missouri, Rep. Kevin Yoder of Kansas and other conservatives in Congress spearheaded the push to boost NIH’s funding by $2 billion — a billion more than requested by the Obama administration.”
A December 16, 2015 The Washington Post article reported on the budget deal’s boost for Alzheimer’s research. According to the article, “The spending deal Congress reached Tuesday night includes an unprecedented increase in funding for Alzheimer’s research: $350 million in fiscal 2016. If approved by the White House, it will increase government spending on the disease by over 50 percent. Advocates have long pushed for significant increases in Alzheimer’s spending, calling it a coming crisis and saying it should be funded at the same level as cancer, HIV/AIDS and heart disease research.”
A December 16, 2015 Science article reported on the details of the budget deal and NIH’s budget boost. According to the article, “The bill includes $350 million in new spending for Alzheimer’s disease research, a 60% increase over the 2015 amount and well above the president’s request of $51 million. It contains the $200 million requested by Obama for his Precision Medicine Initiative, $85 million in new funding for the BRAIN Initiative, and a $100-million boost for NIH’s role in a federal initiative on antimicrobial resistance. The National Children’s Study (NCS) follow-on, a revamped version of a study that NIH scrapped last year, receives $165 million, the same amount allocated for the NCS in 2015.”
RESEARCH, SCIENCE, AND TECHNOLOGY
A December 16, 2015 STAT News article reported on the growth of patient registries collecting data on rare diseases. According to the article, “Many such registries have been created by advocacy groups, government agencies, or companies over the years, but they are ‘becoming a very common step for companies developing therapeutics,’ said Vanessa Rangel Miller, vice president of genetic services at PatientCrossroads, a registry management company. And increasingly these registries rely not on medical charts but on patients’ own reports to get a better sense of how their diseases and treatments affect them day to day.”