What Are the Politicians Doing About Alzheimer's?
Participants at a pre-convention forum in Philadelphia call for more government action
There was no argument among panelists gathered Monday in Philadelphia for a forum on the growing Alzheimer’s crisis: America is not ready, and things need to change.
As economist Laura Tyson put it, Alzheimer’s disease is "one of the leading economic concerns" she sees going forward.
Tyson, who served as chair of the Council of Economic Advisers during the Clinton administration, was among those gathered to hear policymakers speaking at The Path Forward: An Atlantic Forum on Alzheimer's just hours before the Democratic National Convention was gaveled to order. Tyson made her remark to The Atlantic's Washington editor-at-large Steve Clemons before the event.
Pennsylvania Secretary of Aging, Teresa Osborne, and three members of Congress addressed the issue.
Not Enough Political Movement
Michigan Democratic Sen. Debbie Stabenow conceded that Congress isn't moving fast enough to meet the annual $2 billion in research funds requested by the Alzheimer's community, though the $936 million appropriation for this year and $1.4 billion for next year is up from $600 million a year ago when The Atlantic last held a forum on Alzheimer's.
That's when Maine Republican Sen. Susan Collins warned that Alzheimer's is "going to bankrupt Medicare and Medicaid if we do not invest in research."
Though it's an election year, neither political party seems especially alarmed at the approaching Alzheimer's storm.
The only mention of Alzheimer's in this year's Democratic party platform is one line that feels almost boilerplate: "We must make progress against the full range of diseases, including Alzheimer's, HIV and AIDS, cancer and other diseases, especially chronic ones." The Republican platform says only this: "Federal and private investment in basic and applied biomedical research holds enormous promise, especially with diseases and disorders like autism, Alzheimer's, and Parkinson's."
Stabenow is increasingly worried about "a very important difference in philosophy being played out in Congress right now." She said there's a "growing group of very conservative Republicans who believe anything worth doing should be done by the private sector."
These are the same people, she said, "who think the National Institutes of Health should be gone and who say, if you can't make a profit doing research, it's not worth doing. Government, they say, is evil. That's a real danger in a democracy."
Stabenow added: "The reality is that the basic [Alzheimer's] research that needs to be done has such high [financial] risk, it has to be taken on as a public-private partnership."
New York Democratic Rep. Mark Tonko says funding for Alzheimer's research "is an issue that will drown us if we don't address it. We need truth in budgeting.”
Tonko was the Democratic sponsor of the Alzheimer Accountability Act that became law last year. It insures Congress makes decisions on Alzheimer's funding based on "professional judgment budgeting" — how the expert researchers gauge funding needs — and not based simply on "political whims."
‘Signature Disease of Boomers’
Oregon Democratic Rep. Earl Blumenauer, who launched the Congressional Neuroscience Caucus in 2010, made an impassioned plea at the forum for more funding.
"Alzheimer's is the signature disease of boomers. They're more afraid of Alzheimer's than cancer,” he said. “We don't have to cure Alzheimer's. If we're able to delay the onset for five years, it will cut in half the suffering, the cost and trauma because in that period of time for older people, something else will catch up with them."
Blumenauer said he couldn't understand why it's so hard to engage people with the need. "We talk about moonshots [for cancer]. We need a national initiative with major research components," Blumenauer said.
"Alzheimer's touches everybody. We've got to do a better job of why it inspires such passion to build a broader coalition. Failing that," he lamented, "we're going to be looking at 16 million people [with Alzheimer's] in 2050 at a cost that's larger than all our health care expenditures combined."
Hitting Home in Pennsylvania
Given the location, special attention at the forum was given to Pennsylvania, which is graying at a faster clip than much of the rest of the country. The state has the fourth highest percentage of people 60 and over. In another two decades, it's estimated that Pennsylvanians over 65 will make up nearly a quarter of the population.
Today, some 400,000 people in Pennsylvania have Alzheimer's or other dementias. Complicating their care, Pennsylvania is largely a rural state. That means most of its 67 counties are without access to resources and hospitals connected to research universities doing clinical trials.
Pennsylvania's Aging Secretary Osborne said the states are dependent on federal research into Alzheimer's. "When you're facing a health crisis and epidemic, such as Alzheimer's, with more and more boomers entering the ages when early onset diagnoses are being made, we need to have a plan going forward," she noted.
Funding for Early Care
Stabenow, the ranking Democrat on the Senate finance subcommittee on health care, was the lead sponsor of the Hope for Alzheimer's Act, which provides newly diagnosed patients access to early care management.
"The Alzheimer's Association says its surveys show 40 percent of doctors don't make an Alzheimer's diagnosis in their patients who have it, in part because the doctors don't think they can do anything about it. Or if you are given the diagnosis, you're frequently told, 'This is the diagnosis, good luck.' Now, doctors will be reimbursed for a caregiving plan," she said.
New Research Results
At this week's Alzheimer's Association International Conference in Toronto, one report said that less than half of people being affected by Alzheimer's have actually been diagnosed. And researchers pushed for doctors to use existing prescription drugs to treat symptoms of Alzheimer's — even without the promise of a cure — rather than wait for the next generation of medicines.
Stabenow reminded The Atlantic Forum that the brain is the least researched organ in the body. Because of it, she said, President Obama announced the White House BRAIN Initiative (Brain Research through Advancing Innovative Neurotechnologies) in 2013 to help researchers uncover the mysteries of brain disorders, including Alzheimer's, Parkinson's, depression and other mental illnesses.
"Alzheimer's is the new disease of us living longer," said Stabenow. "The good news is we're living longer." But because there's still no cure, "the bad news is we're living longer."