BOSTON — To get to the heart of the fight for more government funding for Alzheimer’s research, it’s instructive to look back into Rep. Ed Markey’s childhood. Standing in loafers in the sand of Revere Beach recently, Markey remembered summers there.
“My mother would take us down to Malden Square and we could get on the blue bus and come down from Malden Square to Revere Beach,” Markey reminisced.
He and his brothers would swim all day, stopping only to eat peanut butter sandwiches. At the end of the day, his father would join the family.
“He would come over here from the Hood milk company and we’d all swim together in the ocean,” Markey said.
Decades later, in 1985, Markey’s mother Christine developed Alzheimer’s when she was in her 80s. His father would often bring her back to Revere Beach.
“My father liked to just sit here and read the paper and look out at the beach and my mother could sit in the front seat,” Markey said. “But we taped over the lock and the handle on the passenger side seat so that she could not get out of the car.”
People with Alzheimer’s often become confused and might try to escape from people they know.
Markey says his father vowed he’d never let his wife set foot in a nursing home. He cared for her for 13 years at their family home. The congressman often came back from Washington to help until she died in 1998. Markey’s personal experience shaped his deep commitment to funding research for treatment. He’s the U.S. House sponsor of the recently passed National Alzheimer’s Project Act, a strategic plan to address the epidemic. But it’s a tough battle in Washington.
“Alzheimer’s is a disease which clearly has been underfunded,” Markey declared.
Why Funding Lags
For example, the National Institutes of Health (NIH) spends $3 billion a year on research of AIDS, which affects around 1 million people in the U.S. Nearly 5.5 million Americans are believed to have Alzheimer’s, yet it receives just under $500 million a year. The government funds more nutrition research than it does Alzheimer’s research.
In part, Markey says, that’s because most Alzheimer’s patients and their caregivers can’t get to Washington to fight for more funding.
“That’s different from other diseases where victims themselves can lead the marches,” he said.
While Markey fights for funding in D.C., John Yaris fights for it on a much smaller scale in western Massachusetts. He asks neighbors and co-workers to sponsor him in fundraising walks. His wife died of Alzheimer’s last year after 10 years of fighting the disease. He kept her condition quiet at first.
“I grew up where we don’t talk about certain things, and anything to do with the mind, with the brain, is something you just don’t talk about,” Yaris said. “And so people aren’t necessarily so quick to talk about it, much like [how] cancer was dealt with in the past.”
This stigma is another reason why it’s hard to raise money, according to Carolyn Whipple-Fraser , who runs development at the Massachusetts/New Hampshire chapter of the Alzheimer’s Association.
“Oftentimes when someone is diagnosed with Alzheimer’s, it stays within the family,” Whipple-Fraser said. “It’s a hush-hush disease.”
That may be one of the reasons why the fundraising walks for Alzheimer’s are much smaller than those of other diseases.
All 12 of the Alzheimer’s walks around the state raised a total of nearly $2 million this year. Compare that to the Pan-Mass Challenge bike ride, which raised $33 million for cancer research last year. The Boston Marathon Jimmy Fund Walk is expected to raise $7 million this year. Tim Armour, president of the Cure Alzheimer’s Fund, says diseases that affect young people are often viewed as being more worthy of support.
“There’s this sense that, well, it’s too bad that it happens to elderly people but it does happen, it’s just kinda natural and, isn’t it awful that we have these young people affected with these other terrible diseases, so I think there’s a certain amount of gentle cultural ageism involved with Alzheimer’s,” Armour said.
As chief fundraiser for the Alzheimer’s Association, Whipple-Fraser says she sees this type of ageism all the time.
“I actually had a conversation with a neurologist last year and he was involved with another disease and I said, ‘Would you consider being involved in the Alzheimer’s Association?’ and his response was, ‘I would rather support people who are younger in age than people who are elderly.’ ”
Stigma and the perception that the disease only affects the very old have left Alzheimer’s researchers struggling for private and government backing to find a drug that will delay or stop the disease. This was devastating news to Henry McCance when his wife Allison was diagnosed in her late 50s.
“‘Why don’t you try three Advil a day? It might help. Why don’t you try Lipitor, an FDA-approved drug for high cholesterol, it might help,’ ” he said the doctor told him.
McCance is appalled by the lack of progress in treating Alzheimer’s.
“When I learned the magnitude of the disease, the length of time the disease has been known and the weakness of the response that the medical community can offer families in my situation, I was shocked, frankly,” he said.
Urging Private, Public Support
But his shock quickly turned to action. He’s a man who is used to taking on big projects and getting results. McCance is president emeritus of Greylock Partners, a venture capital firm that backed Facebook and Millennium Pharmaceuticals. In 2004 he and two other families with local ties used their own money to create the Cure Alzheimer’s Fund. It uses the venture capital model to fund top researchers.
“We were going to challenge them: give us your best higher-risk research projects,” he said. “We are not afraid to fail and we know that if we do fail the learnings from that will be valuable as well.”
Last year the fund spent $3 million on 15 projects, which helped identify genes that show risk for the disease. Half of the money comes from the founders, the other from private donors. McCance is trying to widen the private fundraising base, but he says the government should make a larger commitment to funding Alzheimer’s research.
Markey agrees. He says the government is already spending billions in Medicare and Medicaid to care for people with Alzheimer’s and, without medical progress, those numbers will skyrocket.
“Very few members of Congress as we sit here knows that $130 billion was spent on Alzheimer’s to take care of the victims last year in the United States, and that number is going to balloon to $500 billion or $600 billion by the time the baby boomers have retired,” he said. “So the strongest argument beyond the humanitarian argument is that the budget cannot be balanced in the years ahead if this kind of a drain is placed upon it.”
Alzheimer’s advocates say that the flat federal funding is significantly hindering research advances and is driving some talented scientists from the field, especially younger researchers who have a hard time securing funding from the NIH. Armour, the president of the Cure Alzheimer’s Fund, says this is unfortunate because researchers say Alzheimer’s can be conquered.
“The shame of it is that the science is moving much more faster than the resources,” Armour lamented. “If we have the money … the science would be able to move much faster towards ameliorating this condition.”
The incidents of Alzheimer’s are surging at a time when federal funding is shrinking overall and the economy has put a strain on everyone’s wallet. But Alzheimer’s advocates warn it’s critical that the government find a way to increase funding not only to prevent the suffering of millions of Americans, but also to head off an economic crisis.