DYING, ILLNESS, AND AGING WITH GRACE

Norman Bauman provided helpful links and comments about the 21st Century Cures Act in the Association of Health Care Journalists' discussion group. I share them here:
• With media watchdogs on the sidelines, pharma-funded advocacy groups pushed Cures Act to the finish line (Trudy Lieberman, Health News Reviews, 12-6-16) ‘Progress’ touted by pharma is a huge step backward for patients. "If the committee’s masterful sales job for the Cures Act is a textbook example of what constitutes effective PR and advocacy in Washington these days for legislation that may not be in the best interests of the public, press coverage offers a textbook example of media abdication of their watchdog role. As HealthNewsReview.org pointed out repeatedly over the past year and half, mainstream journalists, with some exceptions (including Carolyn Johnson at the Post and Sheila Kaplan at STAT) did not look closely, ask hard questions, or explore the downsides until the last few weeks when the Cures Act was a done deal headed for victory."
• The 21st Century Cures Act is a deal that will give a lot of money to the NIH, FDA, Cancer Moonshot,etc., but will also weaken the FDA's standards of evidence used to approve drugs, particularly randomized, controlled trials (RCTs). It's a handout to the pharmaceutical industry.  Read More 

Updated 8-24-17. This former journalist helps caregivers get to know who their patients once were, before dementia took hold (Tara Bahrampour, The Age, 12-16-16) Jay Newton-Small, a District resident, started a business writing anecdote-filled profiles of dementia patients after her father got Alzheimer’s. 'Until seeing her profile, caregivers for  Read More