Maria Shriver, First Lady of California, wrote in a blog on www.huffingpost.com:
“I wrote a book called, What's Happening to Grandpa? At the time, I said I wrote it to help my children understand what was happening. In truth, I wrote it to explain Alzheimer's to myself. But when I wanted to turn it into a television special -- to shine some light on this subject -- no one was interested. I was told Alzheimer's wasn't big enough -- it was just "an old person's disease."
It is time for this attention. Because someone is diagnosed in this country with Alzheimer's every 70 seconds. And fully one third of Americans have a direct experience with this disease. The epidemic is growing.”
What a contrast with the 24-hour news cycle about the current flu which to date has affected a few thousand and caused (thankfully) relatively few deaths. It is also worth noting that an individual sufferer deals with flu for a matter of weeks. Decline and death from Alzheimer’s is often measured in years if not decades.
How do we make the invisible visible?
The HBO special on Alzheimer’s is a great start. Taking a cue from the current flu crisis I went to www.pandemicflu.gov. The website has a wonderful map. Visitors to the site can click on each state to see the number of flu cases reported including any deaths.
What about a site www.alzheimers.gov? Where we could click on each city to learn how many individuals with Alzheimer’s disease reside there? Of course it would be great to have this kind of visual presentation available for every disease.
As of now, most media attention about illnesses related to the aging process come from the pharmaceutical industry, i.e. advertising their drugs to treat Alzheimer’s, selling power chairs, or the like. Naturally their messages are geared toward the products they are selling. These commercials usually suggest that the viewer speak with his/her doctor about this or that condition.
Is the doctor’s office the only place for discussions? Are these subjects that only affect the individual?
No and No.
Friday, May 15, 2009
Wednesday, May 13, 2009
Alzheimer’s Disease---A Different Kind of Pandemic
Yesterday I watched "The Alzheimer's Project," a four-part HBO documentary which looks at the faces behind the disease and the hope for a cure. Anyone can watch these programs for free online at the website for the National Alzheimer’s Association.
The NAA has also published a new report, 2009 Alzheimer’s Disease Facts and Figures. The report is a comprehensive statistical abstract of U.S. data on Alzheimer’s disease that includes: prevalence, mortality, the costs of Alzheimer care, caregiving and a special report on Mild Cognitive Impairment and early-stage Alzheimer's.
The numbers are mind-boggling:
• As many as 5.3 million people in the United States are living with Alzheimer’s.
• Alzheimer's and dementia triple healthcare costs for Americans age 65 and older.
• Every 70 seconds, someone develops Alzheimer’s.
• Alzheimer's is the seventh-leading cause of death.
• The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year.
The National Pandemic Influenza Preparedness and Response Plan mandates that state plans identify “public and private sector partners needed for effective planning and response.” Also the plan insists on “coordination with local authorities, such as county and city public health departments, to assist in developing local plans on which the state plan depends.” Every state had to submit their plans to the CDC by April 2007 for evaluation.
What if we had this kind of plan for a community response to Alzheimer’s disease? To cancer? To all of the illnesses and disabilities that already afflict individuals and communities---contagious or not?
How would the national health care debate be different if we were asking each elected official---how many people in your district have Alzheimer’s? Are disabled? Need special equipment? Are dealing with cancer or HIV? Are 80+? 90+? Are the public and private sector partners in your district ready to meet these needs? Today? Tomorrow?
I think there is a huge disconnect between national discussions about health care and the current and projected local requirements.
All illness is local. All aging is local. All politics is local.
The NAA has also published a new report, 2009 Alzheimer’s Disease Facts and Figures. The report is a comprehensive statistical abstract of U.S. data on Alzheimer’s disease that includes: prevalence, mortality, the costs of Alzheimer care, caregiving and a special report on Mild Cognitive Impairment and early-stage Alzheimer's.
The numbers are mind-boggling:
• As many as 5.3 million people in the United States are living with Alzheimer’s.
• Alzheimer's and dementia triple healthcare costs for Americans age 65 and older.
• Every 70 seconds, someone develops Alzheimer’s.
• Alzheimer's is the seventh-leading cause of death.
• The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year.
The National Pandemic Influenza Preparedness and Response Plan mandates that state plans identify “public and private sector partners needed for effective planning and response.” Also the plan insists on “coordination with local authorities, such as county and city public health departments, to assist in developing local plans on which the state plan depends.” Every state had to submit their plans to the CDC by April 2007 for evaluation.
What if we had this kind of plan for a community response to Alzheimer’s disease? To cancer? To all of the illnesses and disabilities that already afflict individuals and communities---contagious or not?
How would the national health care debate be different if we were asking each elected official---how many people in your district have Alzheimer’s? Are disabled? Need special equipment? Are dealing with cancer or HIV? Are 80+? 90+? Are the public and private sector partners in your district ready to meet these needs? Today? Tomorrow?
I think there is a huge disconnect between national discussions about health care and the current and projected local requirements.
All illness is local. All aging is local. All politics is local.
Monday, May 11, 2009
The Five People You Meet in a Pandemic…
I am a member of The Hastings Center---an independent, nonpartisan, and nonprofit bioethics research institute founded in 1969. To quote from their home page: The Center's mission is to address fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies.
During the recent flu flurry I checked to see if the Center had published anything on the flu pandemic. I found this treasure written by Nancy Berlinger and Jacob Moses: The Five People You Meet in a Pandemic—And What They Need from You Today. (November 2007)
The five people (truck driver, gatekeeper, triage officer, janitor, and public health official) each represent a group of first responders. Each has needs and complex responsibilities to the community. The authors ask important questions about health care during a pandemic, for example: incentives, public education, collaboration, fairness, end-of-life care, training for triage, and rationing supplies. They urge public and private sector leaders to recognize the duty to plan, the duty to develop rules and tools for first responders, and the duty to be accountable to one another. The also urge that ethics be given a seat at the planning table. The report ends with these words:
“All of these decisions are hard decisions. To say these decisions are too hard to make today is to shirk our duty to plan, and to make the duties of first responders even more difficult.
And to say Americans won’t plan, or won’t ration, or won’t care about others---and will no longer trust the public sector to be on their side---is to allow cynicism to triumph over civic responsibility and the public interest. In considering these five people, pandemic planners must show the rest of us how we will care for one another, as communities and as a society, in perilous times.”
My question is---how do we apply this commitment to planning, to confronting hard choices to less sexy illnesses that afflict millions already---like alzheimer’s disease? The chronic, debilitating illnesses of old age?
Do only contagious diseases merit a community response? Qualify for public and private sector planning?
These questions are vital. I think we make an artificial dichotomy between contagious disease and non-contagious disease. We see the former as a community issue requiring planning/preparation and the latter as a private tragedy/responsibility confined within the home. Yet anyone who has had an illness or cared for someone through an illness process has met the truck driver and the gatekeeper; has confronted the ethical challenges of collaboration, fairness, end-of-life care, triage, and rationing supplies.
All illness is a community issue. All illness mandates planning by both the public and private sector.
During the recent flu flurry I checked to see if the Center had published anything on the flu pandemic. I found this treasure written by Nancy Berlinger and Jacob Moses: The Five People You Meet in a Pandemic—And What They Need from You Today. (November 2007)
The five people (truck driver, gatekeeper, triage officer, janitor, and public health official) each represent a group of first responders. Each has needs and complex responsibilities to the community. The authors ask important questions about health care during a pandemic, for example: incentives, public education, collaboration, fairness, end-of-life care, training for triage, and rationing supplies. They urge public and private sector leaders to recognize the duty to plan, the duty to develop rules and tools for first responders, and the duty to be accountable to one another. The also urge that ethics be given a seat at the planning table. The report ends with these words:
“All of these decisions are hard decisions. To say these decisions are too hard to make today is to shirk our duty to plan, and to make the duties of first responders even more difficult.
And to say Americans won’t plan, or won’t ration, or won’t care about others---and will no longer trust the public sector to be on their side---is to allow cynicism to triumph over civic responsibility and the public interest. In considering these five people, pandemic planners must show the rest of us how we will care for one another, as communities and as a society, in perilous times.”
My question is---how do we apply this commitment to planning, to confronting hard choices to less sexy illnesses that afflict millions already---like alzheimer’s disease? The chronic, debilitating illnesses of old age?
Do only contagious diseases merit a community response? Qualify for public and private sector planning?
These questions are vital. I think we make an artificial dichotomy between contagious disease and non-contagious disease. We see the former as a community issue requiring planning/preparation and the latter as a private tragedy/responsibility confined within the home. Yet anyone who has had an illness or cared for someone through an illness process has met the truck driver and the gatekeeper; has confronted the ethical challenges of collaboration, fairness, end-of-life care, triage, and rationing supplies.
All illness is a community issue. All illness mandates planning by both the public and private sector.
Subscribe to:
Posts (Atom)
Posts
