“If we just could increase awareness,” some of my friends with Alzheimer’s say, “funding would rise and the illness could be eventually controlled or eliminated.” I wish it was that simple.

Politics of Research Funding
As we live longer with illnesses that in the past killed us off quickly, the demands for research funding that would lead to their control and elimination increase. With limited federal funding, the demands on the money pie expand while its size may only increase slightly. The 8” pie capable of feeding four people, may increase to 10”, but the number of hungry people waiting for a slice may have expanded to 20.

It’s understandable that someone affected by, or living with a chronic or terminal illness wants more funding for their problem—even if it means less for another illnesses. And as someone who is living with prostate cancer, I, of course, believe my illness should receive the most money. Self-preservation is a powerful factor in justifying inequities.

But if for a moment we can put aside our own biases, we probably could all agree that the greatest number of yearly deaths or the number of people living with a chronic or terminal illness should receive the greatest amount of research funding. But even a cursory look at the latest NIH funding figures suggests other factors may be influencing priorities—especially with Alzheimer’s.

 

NIH Spending                                                People
Amount                        Illness                        Living With It            Yearly Deaths
$890 million                 Breast Cancer             2.6 million                       40,000
$285 million                 Prostate Cancer          2.4 million                       34,000
$226 million                 Lung Cancer                373,000                           160,000
$381 million                 Cardiovascular            27.1 million                     600,000
$3 billion                       AIDs                              1 million                          18,000
$450 million                Alzheimer’s                   5.4 million                      82,000

 

Only cardiovascular illness (which includes various illnesses) has more people living with the illness than Alzheimer’s. And it’s estimated that over the next four decades, Alzheimer’s care will cost the United States approximately $20 trillion. Advocates would say, that based on the data, funding for Alzheimer’s should be at the top of the list. And many maintain that the path to a more favorable ranking is increased awareness.

The problem is that “awareness” follows a willingness to look. Without the willingness—because of fear or other factors—awareness often doesn’t occur. People tend to avoid things that frighten them. And Alzheimer’s is a big one.


A Lesson from Women

To understand how the fear of Alzheimer’s may prevent awareness, you can look at the history of research funding discrepancies between prostate cancer and breast cancer. While both kill approximately the same number of people each year, and both have the same number of people living with the illness, breast cancer funding is almost four times that of prostate cancer. So what could account for it?

I think it’s related to men equating what happens below their belt to who they are—their identity.  In the late 1960’s, women and their families realized identities weren’t tied to body parts. Very bluntly, women knew they weren’t their breasts.  Men, on the other hand, are still light years behind.  I believe it was the willingness of women with breast cancer and their advocates to openly deal with issues of fear and identity that allowed them to increase awareness of the illness, which led to demands for increased research funding, which hopefully is leading to its elimination or control.


Acceptance Before Awareness

The problem is more insidious with Alzheimer’s. It’s not the patient who needs to struggle with identity issues—unlike many men with prostate cancer—but rather society.

When people with little understanding of Alzheimer’s look at someone who suffers with it, they see someone who they fear, or a person who has regressed to being a child, or most frightening, someone who they fear becoming.  One person painfully described how when he told good friends about his Alzheimer’s, they gradually stopped coming by to visit.

The fear of what isn’t understood gets translated into isolating those with Alzheimer’s from a life filled with people with whom they’ve had a connection. It isn’t done because people lack compassion, but rather because they don’t understand what someone with Alzheimer’s is experiencing. And that uncertainty and fear can reduce awareness of the illness, which results in reduced demands for research funding, and delays its elimination or control.

I would guess that before breast cancer funding dramatically increased, it was proceeded by a changed view society—and men in particular—had of women with breast cancer. I think before research funding for Alzheimer’s can substantially increase, society needs to see the person with Alzheimer’s as someone who lives with a dreadful illness, rather than someone who is the illness, with all of the stereotypes that our culture attaches to it.

So yes, I agree that increased awareness is important. I welcome all of the impassioned pleas from Hollywood celebrities,  pronouncements by politicians, hearings by senators, and even articles of support by writers like me. But, in the overall picture, unless society is willing to look at the person with Alzheimer’s with the compassion and understanding we would give to our mother if she had a debilitating illness, all the awareness in the world may not effect funding priorities, and worse, will just continue the isolation people with Alzheimer’s experience.

14 Responses

  1. Steve Evans

    For the first time, I believe you are completely and totally mistaken. I have been deeply active in Alzheimer’s research. For a brief research period, we reversed it nearly completely in a number of patients. Our research was presented to the Board of Directors of two of the national Alzheimer’s associations for possible further validation funding. It fell on death ears. Why? Well, their traditional clinical medical board of advisors said, this line of research hasn’t been proven. This line of research is not currently validated in the literature. Never mind that the person presenting went from a nearly dire condition to a nearly well condition in less than 60 days. Never mind that there were other case studies of utterly remarkable reversals. [Without funding, our collaborators were dispersed and we can now no longer manufacture the product used in this specific research effort].

    Increasing money for research will not in any reasonable amount of time whatsoever have a major impact. You simply don’t understand the financial basis for disease research. The driver for research is primarily to find patentable therapeutics that can give some temporary relief [but ideally require the ongoing ingestion of the prescription drug]. Another driver is to prove the pet theory current having a strangle hold on the boards that allocate funds – even though this line of research has been seriously indicted. Another driver is to pursue some conceptual break-through that could lead to a Novel Prize for the researcher – even though it might not have any conceivable way as yet to impact any patient at all. Oh, by the way, the last point is why one would never ever share their findings with others since they may then win, and you won’t.

    This completely naive imagination about medical research lies at the basis for why the War on Cancer has yielded in fact hardly any progress at all since the 1970’s when it was launched by Nixon. So until we change the fundamentals on the very nature of how the money is actually spent, the expectations are quite pessimistic. As an independent research institute, we have actually tackled this disease head-on. We fund the research out of our own pocket. And if we are successful, we will disseminate the results publically without any revenue stream returning to us. Oh, and by the way, the answer will NOT be a proprietary product costing a fortune. If we are very lucky, we’ll in fact just give it away.

    Stay tuned – I’ll pass along to Stan any results we achieve that can be disseminated.

    Reply
    • Stan Goldberg

      Hi Steve,

      The intent of the article was not to pit traditional research against others that might be less mainstream–even those that offer a greater possibility of success, along with lower costs. I defer to you and others who are engaged in research–either primary or secondary–to argue the points.

      What I tried to focus on in the article is that with Alzheimer’s and other diseases, there is the hope that by simply increasing awareness, public support for NIH funding will follow. It’s been my experience that awareness is the result of a willingness to personally connect with an illness, rather than fearing and pushing it away.

      Unless my writing wasn’t clear, I don’t think I was making a judgement about the quality of NIH or major illness Foundation funding. Rather it appears to me that there is a connection between honestly talking about an illness, to increasing awareness, to increasing federal funding. Whether federal and foundation administrations are making wise decisions regarding where they are putting their money is a different issue. That’s something I’ll leave to you.

      Take Care,
      Stan

      Reply
  2. Cindy Laverty

    Thank you for having the courage to state what is true…to talk about the compassion that is void from the discussion. You are so right. Until our society looks into the eyes of the person with tenderness and kindness, not much is going to change. Until we, as a society wrap our heads around the fact that the soul never has Alzheimer’s or any other disease for that matter…the isolation will continue for the person afflicted with Alzheimer’s and the caregiver who never feels heard.

    Reply
  3. Mary Hamilton

    You hit it right on with all these diseases; but having a spouse with prostate cancer for the last 8 years, I’m in agreement with you. Men just don’t realize that it is a “we” disease – we women suffer just as much as they do, and not for the lack of sexual activity; but for the debilitating psychological effect it has the male psyche and how that is in turn portrayed to the spouse who longs to see her man the way he used to be. Only the man feels he is less than a man; we women see no difference except in the way he portrays himself with this dreadful disease. And you are right again that there isn’t enough funds OR interest OR expertise out there to conquer it even if the funds WERE available. Not quite the same as alzheimers and breast cancer, in my opinion. It seems the hardest part of alzheimers is the ones left behind that are not remembered. I think I could handle that better, just saying, as a spouse.

    Reply
    • Stan Goldberg

      Hi Mary,

      Thanks for you kind words. I think for those of us with an identity-changing illness, there is always a battle between what we have been taught through years of cultural indoctrination (e.g., masculinity, self-reliance, “stiff upper lip,” etc.) and what we think would make us happy.

      Years of being told what we SHOULD be, often overwhelms what we would like to be. I do believe that as societal values change, there will be a greater acceptance for modifying “identity.” It’s been my experience (with myself and conversations with others)that even with people who consider themselves enlightened, it’s difficult shedding societal expectations.

      And you are very right that often the needs of those who care for someone with an illness are ignored or devalued. Hopefully my book Leaning Into Sharp Points will change that.

      Take Care,
      Stan

      Reply
  4. Luke Vorstermans

    I helped and watched my mother died of Alzheimer’s — a terrible undertaking for both of us. And I would concur with some of Steve’s comments (above)… and certainly not to take away from your perspective.

    The billions of dollars spent on big pharma drugs, who’s intention is to alter the body chemistry and illicit a favorable response, i.e. healing, is a fallacy. There only motive is a fat paycheck. The fact is… we have fallen for their marketing hype and believe that in number of ‘cures’ are just around the corner, save for a few more dollars.

    We do not address the ‘whys’ of our diseased society… why is cancer running rampant through our culture? What is cardiovascular disease the #1 killer? Why is Alzhemier’s the ‘next big thing’?

    We don’t want to ask those questions and Big Pharma certainly doesn’t want us to… their fortunes depend on it. We hope for that magic pill… the quick fix. That way we don’t have to accept responsibility for our complicity in our overly sick society.

    My mother’s doctor prescribed all kind of ‘pills’ but he not once said to me, “Why not comfort your mother on her last journey.” He was more comfortable pushing a phony agenda of possible healing.

    Of course we need to talk about all these diseases… but not so much their ‘cure’ as why we’ve gone down a path of completely giving into the corporate agenda on many fronts… in our diets, our pollution, our rabid energy consumption, our ‘getting more useless stuff’, our obsession with media and entertainment, etc…. all those wants and distractions which serve little purpose except to stress the body, corrupt the mind and steal our souls.

    We’re disease ridden because we’ve given up personal responsibility. We expect ‘them’ to heal us. But ‘them’ are just as diseased as we are.

    The political charade with the Republican Party highlights all that’s wrong with America. They stand before us with lies, spin the truth and promise a better slice of life if we back them. And yet, we really do know they are incapable of doing so.

    And yet we play the game… picking sides and probably going to the polls to hopefully back a winner. Unfortunately, we all lose.

    Reply
    • Stan Goldberg

      Hi Luke,

      Good to hear from you. I agree with everything you wrote. As someone who has been immersed in critical health issues (caring for the dying, balancing contrasting professional opinions about my own health, battling insurance companies, counseling caregivers, etc.) I nodded in agreement as I read each of your points–and also Steve’s.

      As you point out, there are no easy fixes. But there are many greedy fingers and vested interests. And unfortunately, various illness groups find themselves pitted against equally deserving groups for attention and money, each looking for support and influence.

      In many ways, healthcare funding has turned into a zero sum game (“I can only win if you lose”) I believe Steve is correct in viewing funding decisions with a healthy amount of skepticism. “Breakthrough” remedies always seem tied to huge profits for someone-usually drug companies or those who facilitate their influence. And often those who suffer the most are people with chronic or terminal illnesses who are willing to try anything to prolong life–regardless of what it costs them financially, physically, or psychologically.

      As an old activist from the 60’s I’ve come to understand what things I can influence and what battles I need to yield to others. As important as it is to highlight the role of self-interest in the research funding and the drug manufacturing game, my focus is on those who have chronic or terminal illnesses and the people who care for them. In Leaning Into Sharp Points and Lessons for the Living, I try to enable those who aren’t ill to understand the world of those who are.

      It may not be as grand a strategy as calling drug and insurance companies to task for their greed and insensitivity, but I know from personal correspondence that my words are making a difference. And possibly, just as we did in Montgomery, Alabama in 1965, what I do and say now will not only enable caregivers to understand the world of their ill loved ones, but also may eventually effect the overall discussion about health in our country. I can only hope.

      Take Care,
      Stan

      Reply
      • Luke Vorstermans

        Stan,

        Yes, ‘a little older, a little wiser…’ us former 60s activists!

        What I love about your writing style is the honesty relating to the reality. That’s in sharp contrast to what Steve and I were addressing above.

        In the grand scheme of things, your words will make a big difference! Big Pharma plays on the level of form where most of the action (and profits) ‘appear’ to be. Most people only know the game on this level.

        But the greater influence comes from an alignment with Spirit. I have no idea of what will come forth from that alignment but I do know it will require immensely fewer people (and dollars) to have an effect.

        Sometimes it does feel akin to being a leaf in a windstorm, but a powerful voice, influence a few more, will have a monumental influence.

        You know the analogy of the rudder changing the direction of the whole ship. Well, the rudder is actually controlled by much smaller component called the trimtab — a pivoting mechanism that moves the rudder’s position and therefore the whole ship.

        I feel that voices like yours provide the trimtab factor. It may appear to be so insignificant, and yet, the whole ship moves on that tiny point.

        The health discussion that’s really needed is underway… don’t stop writing!

  5. Paula Christman Lilly

    Did you know that when the name “Alzheimer’s disease” replaced the diagnosis of “senility,” it was not considered a cause of death? The death certificate had to list something else, such as congestive heart failure, even though the heart failure was a direct result of the physical deterioration from Alzheimer’s. And yes, my greatest fear is that I will succumb to this horrible disease the way my father did.

    Reply
    • Stan Goldberg

      Hi Paula,

      I can understand your concern and I’m sure that the thought pops up at the slightest encounter with a cognitive “blip.” I might be wrong but the genetic lines are stronger with Early Onset Alzheimer’s rather than “regular” Alzheimer’s. How the two are differentiated is something beyond my knowledge.

      Take Care,
      Stan

      Reply

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About The Author

I am an author of eight books in four languages. LESSONS FOR THE LIVING: STORIES OF FORGIVENESS, GRATITUDE AND COURAGE AT THE END OF LIFE is my memoir of being a bedside hospice volunteer for six years while battling prostate cancer. My next book, LEANING INTO SHARP POINTS: PRACTICAL GUIDANCE AND NURTURING SUPPORT FOR CAREGIVERS will be published in March, 2012 by New World Library and focus on caregiving for loved ones who have a progressive or terminal illness.