USA2 SPOTLIGHT

A May 11, 2017 UsAgainstAlzheimer’s release called on the Food and Drug Administration to clarify and modernize its current approach for approving new Alzheimer’s disease treatments. The “Single Endpoint for New Drug Approvals for Alzheimer’s Disease” analysis, authored by UsA2's Co-Founder and Chairman, George Vradenburg, with Drs. Howard Fillit, Dave Morgan, Marwan Sabbagh and Richard Mohs, recommends that the FDA approve new medicines that demonstrate a proven benefit on at least one therapeutic endpoint, either cognition or function. Current standards require proven benefits on both endpoints, which may be inhibiting investment in new Alzheimer’s treatments. “Irrespective of the degree of impact on secondary measures, the notion that the FDA would deny approval for a safe and well-tolerated drug candidate that achieves its primary endpoint of improving cognition in patients with Alzheimer’s disease is almost unthinkable,” the authors wrote.

A May 10, 2017 Huffington Post article by LatinosAgainstAlzheimer’s Lead, Jason Resendez, paid homage to Trish Vradenburg in honor of her advocacy and philanthropy that ensured people of color were included in the the national conversation about Alzheimer's. Trish’s quest to build a more inclusive AD movement was shaped by her empathy and strategic thinking. She understood that disparities in AD impacting Latinos and African Americans are driving healthcare costs and destabilizing families, who are less likely to receive a diagnosis from a physician and are underrepresented in clinical research. According to Resendez, “Our American character is defined by folks like Trish; she carried the families touched by Alzheimer’s - white, brown, black, you name it - in her heart.”

(ICYMI) An April 24, 2017 UsAgainstAlzheimer’s release highlighted new survey findings from WomenAgainstAlzheimer’s and the National Association of Nurse Practitioners in Women’s Health showing that the majority of the time (68%) it is patients, not nurses, who raise brain health issues. There is a need for enhanced training, including the adoption of better tools and protocols, to increase brain health assessments during regular care visits. According to Jill Lesser, President of WomenAgainstAlzheimer’s and Chief Strategy Officer of UsAgainstAlzheimer’s, “Alzheimer’s remains like cancer was in the 1960’s, a disease that strikes fear in patients and practitioners alike. Without honest, informed screening and diagnosis, we will continue to leave families in crisis and slow progress to a cure. Clinical trials need participants and brain health awareness and assessments will help us get there.”

MUST READS

A May 10, 2017 The San Diego Union-Tribune article focused on a UK-led consortium which has made available 711 lines of ready-to-go induced pluripotent stem cells (IPS cells) from healthy volunteers. IPS cells can yield insights into Alzheimer’s disease but are in high demand, and lengthy and complicated to produce. The IPS lines are available for research purposes to academic scientists and industry. According to Andrés Bratt-Leal of The Scripps Research Institute, “This kind of study is extremely important because it leads to a deeper understanding of the differences between normal genetic variation and genetic changes that could negatively impact cell behavior.” 

A May 10, 2017 The Los Angeles Times article spotlighted Dr. Scott Gottlieb, the new Food and Drug Administration Commissioner. He is a physician with financial ties to the pharmaceutical industry, yet some see this as an asset to his new role. His agenda includes addressing the opioid drug crisis and bringing prescription drugs to market faster.

A May 9, 2017 Tuscon.com article focused on the disproportionate responsibility shouldered by women when it comes to Alzheimer’s caregiving. About two-thirds of AD caregivers are women and wives are more likely to be caring for husbands than the reverse, and daughters are more likely than sons to be caring for a parent. AD caregivers have higher rates of depression, versus those who care for family members without dementia, and are twice as likely to report "substantial emotional, financial and physical difficulties,” according to the Alzheimer's Association. “One of the challenges in this country is that we have not adequately appreciated the full social impact of dementia. It's not just the patient who is diagnosed with dementia -- it's the family,” said Nicholas Bott, a postdoctoral research fellow at Stanford University.

GLOBAL PERSPECTIVES

A May 11, 2017 Alzheimer’s Society (UK) video and post spotlighted an Alzheimer’s Society investigation which found that the typical person’s bill for dementia social care would take 125 years to save for, as patients and their families shoulder the financial burden of AD. According to Judith from Surrey, whose mom had AD, “My mum ended up spending over £500,000 on her dementia care. By the end of her life mum couldn’t eat, drink, speak or move anything but her eyes, yet she still wasn’t applicable for state funding despite paying taxes and National Insurance all her life. She paid for all her care right until she passed away.”