Tag Archives for Alzheimer’s

Calling on Congress to Increase Alzheimer’s Funding

Published in Woonsocket Call on February 21, 2016

Three weeks before President Obama released his Fiscal Year 2017 Budget on February 9,  Senators Susan Collins (R-ME), who chairs the U.S. Select Committee on Aging, and Amy Klobuchar (D-MN) along with seven of their colleagues, called on the Democratic President to increase funding for Alzheimer’s research as part of his last proposed budget request. Senator Sheldon Whitehouse (D-RI), who sits on the Senate Aging Panel, was among the cosigners.

In the bipartisan January 28 correspondence,  the cosigners said, “If nothing is done to change the trajectory of Alzheimer’s, the number of Americans afflicted with the disease is expected to more than triple between 2015 and 2050,” the Senators wrote.  Already our nation’s costliest disease, Alzheimer’s is projected to cost our country more than $1 trillion by 2050… Surely, we can do more for Alzheimer’s given the tremendous human and economic price of this devastating disease.”

Furthermore, cosigners warned that “$2 billion per year in federal funding is needed to meet the goal of preventing or effectively treating Alzheimer’s by 2025.” 

 Aging Groups Express Disappointment

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare (NCPSSM), says that the Consolidated Appropriations Act, 2016, (P.L.114-113) provided $936 million in FY 2016 (a $350 million or 59.7% increase over FY 2015) for Alzheimer’s disease research at the National Institute on Aging (NIA), the nation’s leading funder of Alzheimer’s disease research.

Richtman expressed disappointment that Obama’s budget proposal did not recommend funding about the FY 2016 level for Alzheimer’s disease and dementia research, it was essentially flat funded.

“Scientists have estimated that spending at least $2 billion a year on research is necessary to accomplish the national Alzheimer’s plan goal of preventing or effectively treating Alzheimer’s disease by 2025,” says Richtman.

According to NCPSSM’s 2016 Legislative Report, “the number of people suffering from Alzheimer’s disease or a related dementia is expected to skyrocket over the next few decades because many people are living longer and the incidence of Alzheimer’s disease increases with age.”

Richtman says “making a significant investment in funding towards finding a cure and appropriate treatments for persons with Alzheimer’s disease and dementias is key to reducing the massive financial drain this disease will impose on the future of the Medicare program, along with the devastating emotional and financial toll exacted on the millions of Alzheimer’s victims and their family members and caregivers.”

The Alzheimer’s Foundation of America (AFA) also expressed disappointment in the proposed $337 million cut in research funding at NIA, contained in Obama’s 2017 Fiscal year budget proposal. “The Administration has been a champion in the fight against Alzheimer’s disease; however, we are disappointed that, in his final budget, the President is retreating,” said CEO and President Charles J. Fuschillo, Jr., of the Alzheimer’s Foundation of America (AFA). “We were hoping President Obama would take the dramatic step necessary to confront the dementia crisis in this country head-on. We will continue to work with Congressional appropriators to ensure we are on the path to a cure,” says Fuschillo, Jr.

Like NCPSSM, Cicilline, Reed, Whitehouse, and many members of congress, the New York-based AFA urged the Administration to build on the historic 60 percent increase in Alzheimer’s research funding that was included in this year’s budget that provided an additional $1 billion in research funding in the upcoming federal budget.  If done, total federal spending would reach almost $ 2 billion, an amount that Alzheimer’s experts say is necessary to finding a cure or meaningful treatment by 2025 (detailed in the National Plan to Address Alzheimer’s Disease.

According to AFA, currently Alzheimer’s disease is the sixth leading cause of death in the United States, with studies indicating it could actually be as high as the third-leading caused.  But this devastating disorder is the only disease in the top 10 for which there is neither a cure nor impactful treatment.  Furthermore, “even with the Fiscal Year 2016 funding increase, funding for Alzheimer’s lags far behind HIV/AIDS, cancer and heart disease.

On the Home Front

Congressman David N. Cicilline, who successfully led the effort in the House to increase funding for Alzheimer’s research by more than 50% last year, sees a need for increased funding a necessity in the Fiscal Year 2017. “Alzheimer’s disease afflicts 22,000 Rhode Islanders and their families each year,” the Democratic congressman representing Congressional District 1.

With Congress poised to begin hammering out next year’s federal budget, Cicilline plans to continue his efforts in the House to fight for an increase federal funding for a treatment and a cure of the devastating disorder.  He urges for Alzheimer’s disease research remain a major funding priority for policymakers at every level of government.

Senator Jack Reed, serving as a member of the Labor-HHS Appropriations Subcommittee, says, “Last year, we successfully included a $350 million boost in new spending for Alzheimer’s research, a 60% increase over the previous year.  Looking ahead to the coming fiscal year, we still have our work cut out for us in this challenging budgetary climate, but I am pushing to secure additional resources to help prevent, treat, and cure Alzheimer’s, as well as for education and outreach.”

“More and more Americans are being impacted by Alzheimer’s disease and we need a serious national commitment to finding cures and treatments.  That means making strategic investments now that will help save lives and future dollars in the long-term,” notes the Senator.

A Call for Action

Experts tell us an impending Alzheimer’s disease epidemic is now upon us. Federal and state officials are scrambling to gear up for battle, developing national and state plans detailing goals to prevent or treat the devastating disease by 2025.

According to the Rhode Island Chapter of the Alzheimer’s Association, an estimated five million Americans over age 65 are afflicted with Alzheimer’s disease in 2013.  The prevalence may well triple, to over 16 million, if research does not identify ways to prevent or treat the cognitive disorder, says the Rhode Island nonprofit.  By 2050, it’s noted that the estimated total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

Congress must not act “penny wise and pound foolish” when it ultimately comes to determining the amount of federal dollars that will be poured into Alzheimer’s research in next year’s fiscal budget.  Less dollars or level funding will only increase state and federal government’s cost of care for Alzheimer’s care in every municipality in the nation.  A total of 469 seats in the Congress (34 Senate seats and all 435 House seats) are up for grabs in the upcoming presidential election in November.  Lawmakers must remember that every voter may be personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.  That ultimately becomes a very powerful message to Capitol Hill that it is important to increase the funding to NIA to find the cure.

 

 

Deciphering the Effectiveness of Alzheimer’s Research Findings

Published July 6, 2012, Pawtucket Times 

          Over a decade my mother was afflicted with the devastating medical disorder, Alzheimer’s Disease. Over the years with this affliction her physician would keep our family updated on the effectiveness of pharmaceutical research on medications that could put the breaks on this devastating disorder, one that would ultimately erase her short and long-term memory, making her husband of sixty years, and adult children virtual strangers to her.

            My family like hundreds of thousands of baby boomers and seniors sought out information from local newspapers, senior publications, national magazines, like Time or Newsweek, to unravel the medical mysteries of Alzheimer’s Disease.  Occasionally, I, like many shoppers at the local grocery store would sneak a peek, reading the National Enquirer while waiting in line looking for a little bit more information on new effective treatments for Alzheimer’s Disease.

Unraveling the Mysteries of Alzheimer’s Disease

            Oftentimes it becomes very confusing for caregivers to determine which profiled treatments are promising ones and which ones are not, due to the diversity of opinions in the research community.  Some articles might detail the effectiveness of taking Vitamin E; while others stress the effectiveness of Gingko, noting how it just might improve your memory.  Others might describe studies that indicate that estrogen replacement therapy is not really an effective treatment for Alzheimer’s Disease for some women.  Or some might even issue a warning to the reader to “not eat off of aluminum plates” because some research findings seem to indicate that an accumulation of heavy metals, such as aluminum, in the brain might cause the devastating disorder of Alzheimer’s.

            Years ago I provided the following helpful tips to readers of my column that might just unravel the mysteries of reported research findings in Alzheimer’s research that are reported by the nation’s media.  These tips are just as true eleven years later.

            Always beware of glitzy headlines. Time limitations keep people from reading every word in articles that appear in their daily, weekly or monthly newspapers.  As a result, may readers just choose to quickly scan the headlines for their information.  Don’t judge an article by its cute headline.  The content of an article is much more balanced than the headline that is composed of catchy words, crafted to draw the reader in.

            Look for authoritative commentary.  You can consider an article to be more credible when it provides multiple quotes on the indications of an Alzheimer’s treatment.  Consider the report to have done a good job if there is an authoritative expert commentary of the significance of the study.  Two likely sources might come from staffers employed by either the National Alzheimer’s Association or the National Institute of health, a major federal government agency that fund’s Alzheimer’s research studies.  One might consider the National Alzheimer’s Association point of view to be less biased and a more reliable opinion than those researchers who have ties to a pharmaceutical company that issued the press release.

            Determine if there are disputes in research findings.  Keep in mind that even if a research study is reported there might be those persons who believe that the study is not well designed or has major research flaws.   On the other hand, the study might just be accepted by the scientific community as a solid study.  However, there might still be serious disagreements about how to interpret the results or how to classify it.  Some researchers might consider it a major study while others would not.  A well-researched article will include the quotes of those who oppose the study.

Seeking out Reliable Expert Sources

            Are you still confused by how to cull articles for tips to learn about safe and effective treatments for Alzheimer’s?  Where do we go from here?  Caregivers should view any article written about new Alzheimer’s treatments as informational in nature.  The article can open the door to the nation’s research community and it now becomes your responsibility to do your homework by seeking out more details about what the research findings indicate.

            If the article describes the results of an actual published research study, obtain the scientific journal with the published study at your local library or search for it on the Internet.   When found carefully read it.  If the findings are reported from a presentation at a conference attempt to track down the researchers for more information.  Finally cruise the Internet and check out the official Websites of the Alzheimer’s Association or the National Institute on Aging, to determine if you can locate more information about a reported new treatment.

            Finally, don’t hesitate to call Donna McGowan, Executive Director of the Alzheimer’s Association – Rhode Island Chapter at 401 421-0008 or email, Donna.McGowan@alz.org, to solicit the organization’s comments on research findings reported by the media. Remember Federal agencies, along with national and state Alzheimer’s organizations monitor research studies and their implications for treatment.

              Herb Weiss is a Pawtucket-based freelance writer who covers aging, health care and medical issues.  His Commentaries are published in two Rhode Island daily’s The Pawtucket Times and Woonsocket Call.

Documentary Explores World of Alzheimer’s Victims, Caregivers

Published in Pawtucket Times on January 26, 2004

Sally Weiss, my 80-year-old mother, has Alzheimer’s disease.

Over the past seven years, the progression of this disease was noticeable to me when I made my trips back home to Dallas, Texas.

However, my family, just like the tens of millions of families across the nation who have loved ones afflicted with this mental disorder, tries to understand and cope with the emotional social and financial impact of this devastating disease.

Last Wednesday, a hard-hitting, nationally broadcast PBS program, “The Forgetting: A Portrait of Alzheimer’s,” sought to bring more “insight, context, hope and help” to viewers who tuned in, hoping to better understand this frightening disorder.

The 90-minute documentary explores Alzheimer’s disease by weaving together the history and biology of the disease, the real-life experiences of three Alzheimer’s patients and their families who lives are touched by Alzheimer’s and the latest research findings that may lead to a cure.

Shame on you if you missed last week’s showing of “The Forgetting,” but you’re in luck, especially if you want a second chance to see the PBS program before it comes out on video. The Rhode Island PBS program affiliate, WSBE 36, has scheduled a rerun of this broadcast for Jan. 29 at 9:00 p.m. and again on Feb. 5 at 2:00 p.m.

The PBS documentary is based on David Shenk’s best-selling book, “The Forgetting.”

After overhearing a conversation in a restaurant about a man and his wife- a woman in her 50s afflicted with Alzheimer’s – he realized that this woman could not recognize her husband. By the time Shenk left the restaurant, he was horrified at the thought of his wife not even knowing who he was, being a stranger to her during the best years of their marriage. This thought ultimately propelled Shenk, a journalist and occasional National Public Radio commentator, to explore the mysteries of Alzheimer’s leading to the writing and publication of his 292-page book.

The PBS documentary warns that with the graying of our nation, we will see a growing number of person’s afflicted with Alzheimer’s disease which is considered  to be an age-related disordered.

By 2011, the first of the nation’s 76 million baby boomers will turn age 65, ultimately setting off a demographic time bomb, creating this Alzheimer’s epidemic.  When this occurs, Alzheimer’s may well become American’s biggest public health concern.

Using special animation, “The Forgetting” helps viewers better understand how Alzheimer’s begins, how it does damage and what kind of new medical treatments are being used to treat it.

“The Forgetting” also focuses on the real-life stories of three families, showing how the disease slowly impacts the family caregivers and the loved ones afflicted with Alzheimer’s.

“Like so many coping with this tragedy, the families who share their stories in  “The Forgetting” all have one major motivation in common – they want to let other people facing similar situations know that they are not alone, that there is help and that they too, can find the strength to face a  tragedy like Alzheimer’s with dignity and grace,” said Elizabeth Arledge, a respected film producer who created the PBS documentary, in a written statement.

“These families are drawing on reservoirs of strength and compassion to stay focused on seeing the person they love instead of the symptoms of the disease,” added Arledge.

Liz Morancy, executive director of the Alzheimer’s Association’s Rhode Island chapter, calls of Rhode Islanders to watch a Rhode Island PBS program. “The 13th State,” on Wednesday, Sept. 28, 2004 at 7:30 p.m.

Scheduled one day before the re-airing of “The Forgetting,” the 30-minute local PBS program will feature a panel discussion about Alzheimer’s.

Panelists included Dr. Cynthia Holzer, of Roger Williams Hospital, along with 84-year-old Sterling Ivision, who is in the early stages of Alzheimer’s, and his daughter Kate Meleny.

“The Forgetting’ shows what a really hard, hard disease Alzheimer’s is,” said Morancy, “but by listening to Ivision, you will learn that he still drives and lives independently. People who have early-stage Alzheimer’s can still have a quality of life.”

Check out the Web site, www.pbs.org/theforgetting. This site will provide advice, resources, and chances for caregivers of Alzheimer’s victims to share emotions and insights. In addition, a downloadable viewer’s guide will provide practical information and answer questions.