USA2 SPOTLIGHT 

A June 12, 2015 Stanford SCOPE blog post highlighted the release of a new report about women and dementia released by Alzheimer’s Disease International and co-funded by WomenAgainstAlzheimer’s. According to the article, “Women are also more likely to be the caregivers to those with the disease. Women care not only for family members — they’re often also employed in low-paid caregiving professions. This is particularly true in lower income countries, where as many as 62 percent of people with dementia live, according to the report…The global costs of dementia amount to more than $600 billion, yet many sufferers, caregivers and programs lack adequate funds. The report calls for additional resources for female dementia victims and caregivers, and it highlights the need for additional research on dementia’s effects, especially in countries with lower incomes. These countries also need to develop national strategies that consider the needs of women, the report states.” Read the full report here.

MUST READS

A June 14, 2015 USA Today article reported that the international Alzheimer's "Tomorrow Study" is expanding. According to the article, “A five-year, international study into the genetic roots of the country's sixth-leading killer is expanding. The TOMMORROW study, which is going on in about 50 locations in North America, Europe and Australia, tests a drug — one used to control diabetes — to see whether it could prevent, or at least delay, the onset of Alzheimer's disease. ‘It's a different approach than anything that has been done before,’ said Dr. Aaron Ellenbogan, lead investigator at the Farmington Hills, Mich., office of Quest Research Institute. The institute also shares a campus with its collaborator on the study, the Michigan Institute for Neurological Disorders, or MIND.”

A June 12, 2015 Reuters article reported that “The Alzheimer's Association may not offer an early look at highly sought clinical trial data on an experimental drug from Eli Lilly and Co (LLY.N) after news of the impending release led to a jump in the company's shares.” According to the article, “Data in the abstracts would have been subject to an embargo, barring their public release until the conference. But participants who were registered to attend the meeting would have had access to their contents, raising questions about whether that would give them information that could influence stock market trading. Shares of Lilly have jumped 7 percent this week, largely on Wall Street expectations that favorable long-term effectiveness data could emerge from the study of solanezumab, an injectable drug with potential to become the first approved treatment to delay progression of Alzheimer’s.”

A June 12, 2015 The Washington Post opinion piece by Ronald Pies advocated for the sexual rights of individuals with dementia. According to Pies, “Sexuality is a topic that makes many people uncomfortable even in the best of circumstances. When a patient with dementia is involved, it is understandable that the stakes may be higher and the emotional atmosphere more heated. We all have an interest in protecting people with advanced dementia from sexual exploitation. But we must also recognize that sexuality, and one’s ability to consent to sex, does not mysteriously disappear when the brain is struggling with dementia.”

A June 12, 2015 The New York Times opinion piece by Gary Ginsberg highlighted the special bond between his father and horse racing. According to Ginsberg, “A decade ago, my father found out he had Alzheimer’s. His mom, dad and brother had all had the disease. He had feared it his entire adult life, and now he was to suffer the same fate. He was forced into a retirement he never wanted. But his love of horses endured. Three summers running, I took him to the Saratoga Race Course until the betting became too complicated for him. But the Belmont still held a special place. Even as his brilliant mind declined, twice he managed to travel by himself from Buffalo to New York with hopes of witnessing one more Triple Crown alongside his son. And twice we were denied. Standing side by side, watching first Smarty Jones and then Big Brown lose in heartbreaking fashion, were among the happiest moments of my dad’s retirement and of my adult life. Just after the Belmont this year, my face still flushed from crying, I called my mom in Buffalo to see if Dad had watched. No, they hadn’t watched the race. He wouldn’t know a horse from a rabbit, she said. Instead, they were sitting at the table having dinner, my father oblivious that his 37-year wait for another Triple Crown winner was over. I started to cry all over again.” Gary Ginsberg is an executive vice president at Time Warner Inc.

POLITICS AND POLICY

A June 12, 2015 The Hill opinion piece by Sara Hart Weir highlighted 21st Century Cures as a chance to improve health outcomes for individuals with Down syndrome. According to Weir, “Thanks to advances in standards of care and medical innovation, people with Down syndrome are living longer than ever before but still face health complications related to co-occurring medical conditions like childhood leukemia, congenital heart disease, autism spectrum disorders, sleep apnea, epilepsy and Alzheimer’s disease…For the Down syndrome community, the 21st Century Cures Act, and its counterpart bill in the Senate, will aid in translating basic scientific discoveries into new therapies and treatments for individuals with Down syndrome. As an example, the first-ever clinical trial on Down syndrome is a drug specifically designed to improve cognitive impairment in the adult Down syndrome population. For people with Down syndrome, a therapeutic that could improve IQ in people with Down syndrome by 10 or even 15 points could be the difference between living dependently with government support or living independently and self-sufficient with limited support. Legislation, like the 21st Century Cures Act, will help make the dreams and aspirations of individuals with Down syndrome a reality much sooner by helping us build a clinical infrastructure that will produce faster and more cost-effective innovations for our community. Our organization calls on members of Congress to support this bipartisan legislation and strongly urges Congress to pass the 21st Century Cures Act as quickly as possible.” Weir, MS, is president of the National Down Syndrome Society (NDSS), the largest nonprofit organization in the United States dedicated to advocating for people with Down syndrome and their families, based in New York, NY and Washington, DC.

ICYMI: A June 5, 2015 Houston Chronicle opinion piece by Reps. Gene Green (D-TX) and Pete Olson (R-TX) highlighted Texan support for the 21st Century Cures Initiative. According to the authors, “To reverse course on flagging investments and inflexible, sometimes outdated regulations, the 21st Century Cures Act was crafted. The landmark legislation takes a forward-looking, patient-centered approach to health care. It introduces reforms to remove hurdles between scientific advancements and the development and regulation of medical products. Provisions of the bill give the FDA new tools to utilize today's best science and leverage key resources in the review process. It includes $10 billion in new mandatory funding for the National Institutes of Health. This infusion of funding is long overdue, and reflects the broad consensus that the health of our country depends on robust investment in medical research.”

POLITICS AND POLICY

A June 13, 2014 Toronto Sun article highlighted one couple’s difficulties with long-term Alzheimer’s care in Canada. According to the article, “But Andrew Robertson, spokesman for Health and Long-Term Care Minister Eric Hoskins, insists the ministry has “enhanced and continues to enhance the amount and quality of care and services provides to long-term care home residents, insisting the funding has increased to $3.9 billion this year from $2.1 billion 11 years ago. But if you look at how the funding formula per diem breaks down through the ministry level of care model, you’ll see that the lion’s share (56%) goes to pay for nursing and PSW wages for basic care with a mere 5% allocated to quality of life programs to allow residents to maintain their optimal level of functioning. Mary Schulz, education director of the Alzheimer’s Society of Canada, says staffing, or the lack of it, is a legitimate issue but it’s not the ‘be-all and end-all.’”