Thursday, February 5, 2015

Do We Need An 'Ice Bucket Challenge' to Help Fund Alzheimer's Research?

Projected  future victims of Alzheimer's (right), and projected costs  - from AARP Bulletin.

"It's just a fact that some diseases have stronger political backing ad that leads to federal funding." - Sen. Susan Collins (R-Maine).

 By all accounts the 'Ice Bucket Challenge',   which seized the nation to help fund ALS research last year , has been an unqualified success. The money raised by some estimates has come to more than $200m. It has propelled ALS funding as no other campaign in recent years. Now, we need the same for Alzheimer's disease - which claimed the life of my mother - because federal funding is not adequate.

Sen. Collins' words expressed at the top -  as quoted in the AARP Bulletin (Jan-Feb, p. 16) - ought to make citizens sad beyond belief. Sad, because it means that without the extra ballast and bucks federal money can offer we may not find a cure or even satisfactory treatment before the number of Alzheimer patients balloons to the point of straining tens of millions of caretakers, and the costs to the nation explode. But it may provide incentive to launch a powerful public funding campaign as we beheld for ALS.

To put Sen. Collins' remark in perspective, the Bulletin notes that "Alzheimer's disease is an also-ran  when it comes to federal funding for research on prevention and treatment....other diseases come out far ahead".  Some of the figures cited for other diseases:

$5.4 billion this past fiscal year for cancer research

$1.2 billion for heart disease

$3 billion for research on HIV/AIDS

Meanwhile, total federal funding for Alzheimer's:  $566 million - or not even half of the amount allotted  for heart disease.

"But heart disease is a bigger threat and challenge!" you say.

Not so. Most heart disease victims either recover within a year thanks to efficacious,  superior treatments (e.g. stents or open heart surgery) or they die quickly after a massive coronary. Alzheimer's patients can linger for years as their mental faculties decline, and the degree of care rises with each passing year - adding to costs- including of lost productivity for the caretaker(s). 

According to federal government estimates cited in the Bulletin (ibid.), Alzheimer's currently costs the United States some $214 BILLION  annually, according to federal government estimates. Putting that amount in perspective, it is 220 times the gross domestic product of Barbados, and  roughly equal to five years fighting in Afghanistan. In other words, if we'd pulled out five years ago from that useless engagement, we could have confronted the Alzheimer's costs - and perhaps cut those costs with high research funding.

The Bulletin also notes that care of the victims will cost Medicaid and Medicare some $150 BILLION in the current fiscal year - with the remaining costs (some have estimated as high as $40 billion) falling on patients and their families. This is what we call the unseen dimension of costs of care because no government accountant or dept. tallies them up.

A 2014 study by reported that 42 percent of families that include someone with Alzheimer's  will spend more than $20,000 per year for care. If that care lasts for six years, as it did with my now deceased mom, it means $140,000 that the family will have to cough up. This might include private nursing payments or even nursing home care at some point.

Bear in mind also, that no one can feel "immune" since early phase Alzheimer's rates are also increasing. But generally it is a disease that singles out those over 65, or so-called "seniors". Indeed, the frequency of Alzheimer's doubles every five years after that age 65 marker. The Alzheimer's Association estimates that  5.2 million Americans had the disease in 2014. As the side graph on the right shows, this is forecast to reach 13. 8 million by 2050.  The attendant costs will meanwhile rise to $1.2 trillion a year as the graph on the left shows.

Nearly two-thirds of these are women, because women tend to live longer than men and so have enhanced probability of getting it (that doubling aspect after 65 again)

The sense of the AARP article is that government and the public too is averse to jumping on the bandwagon - say like so many millions did for ALS (with the "ice bucket challenge") because they dislike the degenerative mental aspects. It's almost as if people feel somehow embarrassed to support such a cause.

But we need to get over this and the sooner the better. Time won't wait and neither will the thousands more Alzheimer's patients and their families to be diagnosed over the coming few months. To that end, why not start an Alzheimer's Ice Bucket Challenge to raise added funds the gov't doesn't seem to be willing to? It will at least make a start and then - who knows? - the government may finally get its own act together when it sees the citizens' response.

Hell, I will be one of the first to sign on to do it if that's what it takes - after all my mom died from it after six years of mental regression. So did my wife's first cousin, see e.g.

One thing we cannot do is harbor a personal or  political unwillingness to confront this monster - or it will consume us, in more ways than we'd like to believe.

See also:

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