Surely it’s coming.
If what researchers at the Cleveland Clinic Lou Ruvo Center for Brain Health recently reported doesn’t result in a national conversation over care for Alzheimer’s disease, nothing will.
It turns out that the failure rate for drugs developed to treat Alzheimer’s over a recent decade was a woeful 99.6 percent and there are few new drugs in the pipeline to be tested.
With the number of people hit by the disease that robs people of memory and their ability to think and reason expected to increase from 6 million today to 16 million by 2050, and with the costs of yearly care projected to rise from $200 billion to $1.1 trillion over the same time frame, how can the conversation not happen?
Especially when study after study shows that young taxpayers who support Medicare and Medicaid will bear the brunt of the huge rise in costs — on the care of people who never get better, only worse.
Yes, chances are better than good there will be a heated and protracted national argument over Alzheimer’s disease care, one where solutions will unleash fallout far more fractious than the debate over the Affordable Care Act ever produced.
But it has to be done. To do nothing is to make our children and grandchildren the working slaves of the brain dead.
Medicare payments alone are around three times higher for people with Alzheimer’s and dementia than for others age 65 and over. Medicaid payments are more than nine times higher.
While the Alzheimer’s Association, which provides the frightening statistics, sees the gigantic costs of care as a morally necessary burden, there are those, including doctors and medical ethicists, who question whether that position is justified.
In an Open Salon Internet blog, Dr. Amy Tuteur, a former clinical instructor at Harvard Medical School, posed a question that drew a huge response: Is Alzheimer’s care a waste of money?
Influential British medical ethicist Baroness Warnock, whom Tuteur greatly admires, has already answered the question of whether it made sense for someone like my dear late mother to receive comfort care in Alzheimer’s facilities that run $40,000 to $80,000 a year.
She suggested, in an interview with the Church of Scotland’s magazine Life and Work, that old people with dementia have a duty to die for the good of the country, that valuable public health resources are wasted on people with dementia.
“If you’ve an advance directive, appointing someone else to act on your behalf if you become incapacitated, then I think there is hope that your advocate may say that you would not wish to live in this condition so please try to help her die.
“I think that’s the way the future will go, putting it rather brutally, you’d be licensing people to put others down.”
What has kept this type of discussion largely under wraps in the United States is the public’s willingness to buy into the optimism of researchers who have repeatedly said, in effect, that the future never looked brighter for developing drugs that would at least slow the progression of Alzheimer’s disease.
But reality intruded on that optimism with the Ruvo study. Despite billions spent on research by both the government and private sector during the decade 2002-2012, only one drug showed effectiveness while 244 others failed.
It was in 2003 that the FDA approved the last of five medications, Namenda, that are used to treat the cognitive symptoms — memory loss, confusion, and problems with thinking and reasoning — of Alzheimer’s.
None of the drugs can stop the damage the disease does to brain cells, but they may help lessen or stabilize symptoms for a limited time by affecting certain chemicals involved in carrying messages among the brain’s nerve cells.
If they did anything for my dear mother, who died from complications of the disease in 2012, it wasn’t evident. She died in diapers, for years unable to recognize her own family or the woman she saw in the mirror.
That Warnock draws criticism in her own country of Great Britain for her position on Alzheimer’s care is an understatement. Spokesmen for Alzheimer’s charities have condemned her comments as “shocking ignorance” and “barbaric.” So have many legislators.
Right to Life’s Phyllis Bowman asked, “When has loving somebody been a waste?”
To assume Americans couldn’t back the kind of ideas promoted by Warnock appears to fly in the face of 20 years of Gallup polls on the question of euthanasia. In a May poll nearly 70 percent of Americans answered “yes” to this question:
“When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient’s life by some painless means if the patient and his or her family request it?”
Make no mistake: Without the production of new mind-saving drugs, the kind of arguments made by Warnock and Tuteur will become more frequent as more billions are spent on the growing millions with Alzheimer’s.
“In a health care system that cannot afford to provide care to all its citizens,” Tuteur wrote in her blog, “Alzheimer’s care diverts massive amounts of resources away from caring for the young and curable toward caring for the elderly and incurable. As a matter of justice, such a diversion cannot be defended.”
There will be those who say costs of care can be cut by more families taking care of their loved ones at home. Maybe so. But when both Mom and Dad work in a household, that isn’t easy. And 24-hour in-home nursing care isn’t cheap.
Maybe a cost-cutting solution will be the placing of Alzheimer’s patients in the kind of inexpensive steel Quonset hut barracks I lived in during basic training at Fort Leonard, Mo.
Or is it time for baby boomers to fight for the right to let doctors kill them should they get Alzheimer’s?
Let the conversation begin.
Contact reporter Paul Harasim at firstname.lastname@example.org or 702-387-2908.