WBUR

Alzheimer’s Funding Lags Behind Other Diseases

Rep. Ed Markey on Revere Beach, where his mother would take him and his brothers, before she developed Alzheimer's. (Jesse Costa/WBUR)

Rep. Ed Markey on Revere Beach, where his mother would take him and his brothers, before she developed Alzheimer's. (Jesse Costa/WBUR)

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.

The NIH spends $3 billion a year on AIDS research. Alzheimer’s, which affects more than five times as many Americans, receives just under $500 million a year.

“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.

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  • Anonymous

    I wonder how many complaining about this funding “gap” also support reducing medical care for the elderly (aka ObamaCare)?

  • Judith Luber-Narod, Ph. D.

    I made one of the seminal discoveries in the field of Alzheimer’s disease back in 1985–and the world has never heard of me. In fact, I now teach High School. Let me explain.

    Back in 1985 I was a postdoctoral fellow in the lab of Joseph Rogers at UMass Medical School. After Joe decided to fire me for not finding much interesting data in the project he had assigned me, I begged to be given a second chance on a project of my choosing. Long story, short, I was the first to publish evidence that there was an immunologic component to Alzheimer’s disease–by showing staining of immune markers in the brains of those patients. But, being a) Female and b) NOT FROM HARVARD or any other lab focused on Amyloid, I could only get an abstract published at that time, could not get the work published in a journal for a year, and could not get funding to pursue this notion. It was not until 10-15 years later, when I had already left the field due to an inability to get funding, that my work was recognized as the method of immunological staining proved that the then new animal models of the disease exhibited the same pattern of staining.

    I write this, not to pat myself on the back–as I said, I am no longer a researcher, but to point out how a) important NIH funding is for a promising scientist with a novel idea is (I was ahead of my time in my various projects in various fields at least 3 times, but could not get funding to pursue them) and b) the patern of such funding going to well established, “old” science and NOT to women.

    I hope this has changed in the 7 years since I left the scientific world, but I am guessing it hasn’t.

    • knowledge_is_power

      The NIH is incapable of funding anything other than “consensus science” — a great deal of the problem is that NIH review committees are composed of people who already have NIH grants, and one bad review is sufficient to get one’s proposal knocked out of consideration for funding. Groupthink sets in. As a result, any moderately innovative let alone controversial proposal will not make it through. The effect is that one has a select, self-appointing group of fundees. It is compounded by NIH policies that distribute extra money they get to those who already have NIH grants rather than to funding more scientists who don’t presently have grants. Them that has, gets. It’s not unlike the philosophy that has been increasingly prevalent in our own society that funnels more and more resources to the top.

      In a better world their funding processes would make it relatively easy to get money rapidly for pilot projects, even controversial ones, and successively harder to get larger grants that fund research empires. No lab head should have more than 20 people in his or her employ. Scientific progress needs a wide diversity of different perspectives, and progress is stifled when moneyed scientific establishments are constructed.

      Scientific progress could be much, much faster than it currently is if the system valued innovation and forward-thinking over incremental advances and having to do the work and prove it will work before it gets funded.

      We don’t think it is because you are a woman that you weren’t funded — plenty of women do get NIH grants, and there are even  special programs for funding women and minorities –at this point women are at least half of the faculties in biology at universities —  it’s because your approach was too innovative. Their review process absolutely cannot handle novelty.

      As far as Alzheimer’s goes, much more money should be put towards understanding AGING, which affects EVERYONE who survives beyond age 30. And there are strong arguments that money is better spent on the basic science directed at understanding basic mechanisms of how our bodies work rather than on the often myopic and narrowly targeted research aimed at particular diseases. 

      Don’t get me wrong, I would rather give the NIH the money, as screwed up as it presently is, rather than throwing down the Afghan toilet ($1 million/soldier) or buying weapons systems (such as new nukes and Star Wars) that we don’t need.

      It is too bad that you are out of the field, because we all need more scientists like you!

  • Dee

    It will be a joy some day  to sent all t hose old and narrow minded men in Congress
    into retirement….They are so out of touch with the needs of ordinary  Americans –
    Even– their own age brack….Dee

  • Dee

    Addendum…

    They probably haven’t the slightest idea about the cost of getting Americans waistline
    under control either–obesity. Some experts  on the Diane Rehm show were talking
    about this huge pending cost to Medicare ..Thus just to stay on top of this problem
    would reduce billions in savings, also. No need to cut the budget –just become pro-
    active ….We need younger people representing us….Many of those guys in the US
    Congress are losers…They are so out of touch with the needs of ordinary people.

    I wish they would go……Dee

  • HS

    It is frustrating to hear that Alzheimer’s “doesn’t affect young people.”  Most young people may not be directly affected, but they have to live with the emotional and financial consequences of caring for someone with the disease.  I know from personal experience that it takes a huge toll on the family of Alzheimer’s sufferers as they do their best to love and take care of their loved one.

  • Anonymous

    This is a sad development. A professor from Brandeis University is predicting an onslaught of Alzheimer’s and Parkinson’s disease in the near future and that we do not have any of the resources in place to treat it or care of elderly with the disease(s): http://michaelmaczesty.blogspot.com/2011/06/senile-america-2050.html

  • Lane Simonian

    More funding is not the key to treating Alzheimer’s disease.  More action is.  Since 1997, scientists have known that peroxynitrite-mediated damage is widespread in Alzheimer’s disease.  This damage includes the oxidation of glucose transport systems, choline transport systems, the enzyme choline acetyltransfersase, g proteins coupled to receptors involved in short-term memory (acetylcholine muscarinic), sleep (melatonin), mood (serotonin), smell (olfactory), and alertness (dopamine), the hyperphosphorylation and nitration of tau proteins (thus interferring with neurotransmission), and the influx of calcium resulting in neuronal cell death.  Every risk factor for Alzheimer’s disease, including high blood pressure, high glucose levels, the APOE4 gene, presenilin gene mutations, bisphosphonate osteoporosis drugs (such as Fosamax and Boniva), late estrogen replacement therapy, mercury, aluminum fluoride, and stress increases peroxynitrite formation.  Every putative prevention measure such as phenolic compounds in various vegetatbles, fruits, spices, and essential oils, and Omega 3 fatty acids in fish oil  prevents the formation of peroxynitrites.  Every peroxynitrite scavenger used in animal models of Alzheimer’s disease , clinical trials, and case studies including ketones from coconut oil, mincycline and other tetracycline antibiotics, rosmarinic acid, grape seed extract, cinnamon extract, true cinnamon essential oil, rosemary essential oil,  sage essenial oil, and lemon balm essential oil has improved cognitive function in animals and /or human beings.  So I say to the Alzheimer’s collection organizations (funding and research) stop refusing to put two and two together and put your careers and profits aside and start effectively treating this disease. 

    • Shirley Lindsay

      Maybe you should do some more research. There IS NO CURE or ONE TREATMENT for Alzheimers. There are multiple types of Alzheimers and in all the medical conferences I have attended treatment will not cure or stop the disease. Research is the key to finding drugs and to matching those drugs to the various types of Alzheimers.

  • Shelly F. Cohen

    I’m really disappointed in the way this article sets up a false conflict – the idea that if, say, AIDS or cancer research gets more funding, Alzheimers research must get less. Pitting old patients against younger ones is equally counterproductive. Instead we need to all join together to increase the total amount of research funding, perhaps by whittling away at the defense budget. Further, over the past several decades the U.S. has gradually reduced the level of funding for pure (as opposed to applied) research. Many great scientific discoveries – including cures – have come about from research that was simply aimed at answering the questions “how?” or “why?” instead of being narrowly focused on a particular result.

  • Sylvia Mackey

    What a shame that the government is not doing more.  A broken brain that is deteriorating is the same as a heart with heart disease that cannot be repaired.  Why does the government not see this growing epidemic of Alzheimer’s Disease as a disease  that has to be arrested and cured?

    Sylvia Mackey, Mrs. #88

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