Do You Want to Know That You Will Be an Alzheimer Patient in Two to Six years?

Yesterday The New York Times reported a medical breakthrough: “the development of a blood test that can  accurately  diagnose Alzheimer’s disease, and even do so years before truly debilitating memory loss.”

Well, “accurately” may be a bit of a stretch. As the Times explained, the test is about “90 percent accurate in distinguishing the blood of people with Alzheimer’s from the blood of those without the disease” and “about 80 percent accurate in predicting which patients with mild memory loss would go on to develop Alzheimer’s disease two to six years later.”

Then, the Times acknowledged, there is one other problem with the test:  “At present, treatments for Alzheimer’s disease are not very effective.”

So why exactly would I want an early warning that would give me two to six years to contemplate what it will be like to observe my mind dissolving? (Of course I could comfort myself with the fact that the test is only 80 percent accurate, but somehow I suspect that would only compound my anxieties.)

“There are people who want to know what their future holds so they can plan their estates and lives,” Dr. Sam Gandy, a professor at Mount Sinai School of Medicine in New York who is chairman of the medical and scientific advisory council of the Alzheimer’s Association, told the Times.

Right, this is an estate planning tool.

No, the “real usefulness of an early diagnostic test would come when
drugs are developed that slow or halt the progression of Alzheimer’s
disease,” the Times explains.  “The drugs would be most valuable if
they could be used before cognitive ability had declined too much.”

In other words, drug companies that are trying to develop Alzheimer’s
drugs need subjects who are still able to describe losing their
memories.

Does this justify putting those subjects through the nightmare of
dreading their fate for two to six years?  I’m not at all sure.  I’d
like to know more about just how close we are to finding a drug that
would slow the progress of the disease.

And what about the 20 percent who are screened and told that their
mild memory loss will probably turn into Alzheimer’s, only to discover,
six years later, that the result was a “false positive”?

No doubt, at that point, they would breathe a huge sigh of
relief—assuming that they hadn’t already had a nervous breakdown. I
would guess monitoring yourself for six years, always looking for signs
that your mind is beginning to shut down, would be quite stressful.

This isn’t to say that this breakthrough doesn’t represent a major
scientific advance. I can understand how finding a “biomarker” for the
disease would be very useful for doctors trying to pinpoint what causes
Alzheimer’s. As Dr. Tony Wyss-Coray, an associate professor of
neurology at Stanford and the senior author of the paper describing the
research, points out, “understanding why the levels of the 18 proteins
are different in Alzheimer’s patients might provide a better
understanding of the disease.”  This makes sense.

But Wyss-Coray doesn’t plan to keep the test in the lab where
scientists can study the bio-marker. Though "the test initially will be used
in research labs,” the San Francisco Chronicle reports,
Wyss-Coray anticipates taking his product to market soon. Already,
he has founded Satoris, Inc. “to commercialize the technology” the
Chronicle explained.

Patrick Lynn, Satoris’ CEO, outlined the game plan in
an interview with the San Jose Mercury News, saying that he hopes to
begin selling the test to laboratories next year—which won’t require
FDA approval, and then win the FDA’s blessing and begin selling it “for
general use” by 2009.

What does “general use” mean? I suspect it means that any elderly
person suffering “minor memory loss” would be seen as a candidate for
screening, and if the test proved positive, that person would then face
a terrible choice: “Do I want to try an experimental drug for
Alzheimer’s, even though they’re not entirely certain that I have
Alzheimer’s? On the other hand, if I do have Alzheimer’s, maybe this
will be the breakthrough drug. . .”

Perhaps it would be useful to have a simple test for Alzheimer’s.
Perhaps some people would like to know what horrors lie ahead for them
and their families.  After losing their motor skills, Alzheimer’s
patients lose their power to speak, and finally the ability to swallow
or eat. It can be a long process.

But why make it longer?  If we can’t help patients, what is the point of screening them?

My real concern is that this is another case of the pharmaceutical
industry’s priorities setting the agenda for medical research.  The
industry needs a larger pool of patients who have been identified
before symptoms develop–but how this knowledge will affect the patient is
not the industry’s concern.

9 thoughts on “Do You Want to Know That You Will Be an Alzheimer Patient in Two to Six years?

  1. There are even more aspects. I’d like to speak of one of the most courageous people I’ve ever know, Tom DeBaggion. Oddly, I knew him almost 40 years ago, when he was distributing the “Underground” newspaper in DC, and having assorted confrontations. Later, though, he discovered his lifelong interest in herbs, and set up a wonderful urban greenhouse and store in Arlingon VA, until the zoning people forced out to beyond Dulles Airport.
    Tom was not just running a store. He is a self-trained and respected botanist, perhaps most specialized in rosemary. The scientific community has accepted his naming of several species and his breeding of more. Stopping at the greenhouse, one could get a tremendous amount of advice from a supremely knowledgeable man who loved to share his knowledge.
    At age 59, he was diagnosed with early-onset Alzheimer’s. His response (see http://www.npr.org/templates/story/story.php?storyId=4658784 ) for one example is to gather friends and colleagues, and to get as much of his knowledge written down as possible. Sometimes a reminder will trigger a burst of remembrance, and sometimes he won’t remember the reminder the next day. Still, even as he documents “Losing my Mind”, he creates a form of immortality.
    One of the few parallels is that of Evariste Galois. Unless you’ve studied some very useful branches of “abstract algebra”, you’ve never heard of him — but he should be remembered as much for his courage as for his contributions to mathematics. His premonition was that he was to die the next day, in a duel at age 20. He stayed up all night, writing out every new mathematical insight possible, sometimes writing in the margin, “I do not have enough time.”
    Should that ever happen to me, I too would want to seek immortality through sharing. When the disease went beyond the point where I could no longer communicate in a meaningful way, my surrogates know that I want comfort measures only, with no life-prolonging treatment. The only exception is that I preauthorize my entering Phase I (if that’s all) clinical trials for the treatment of dementia.

  2. What’s the science of this new test? Since we don’t have any effective
    therapy for treating Alzheimer’s (i.e., we don’t know what to inhibit
    with a therapeutic to prevent or slow down its progression, whether it
    be a small molecule drug, a biologic, a monoclonal antibody, or, hell,
    even a food or vitamin), no one can be certain as to what to measure
    to show advanced knowledge of progression toward the disease.
    I suspect the test makers are seeing correlations. That’s a start.
    That’s how scientists discovered that high cholesterol correlates with
    heart disease. But it was only by testing drugs that reduced
    cholesterol that scientists could actually prove that the correlation
    mattered, and that by reducing cholesterol you could in fact reduce
    your risk of heart disease. And even with a proven biomarker like
    cholesterol, you can’t know if you will be among the ones with high
    cholesterol who will get heart disease; i.e., there’s a bell curve
    distribution even with proven biomarkers.
    So what can they possibly know now about this suite of genes as a potential biomarker of Alzheimer’s (AZ)? There may be a correlation between increase or deficit of these genes and the development of AZ. So developing a test that measures that may in the short run be useful in developing new drugs. It gives them a target to shoot at. But whether affecting the proteins expressed by these genes actually affects the natural history of the disease can only be proven in clinical trials. Until then, all the test can tell a patient is that you MAY be at risk of
    developing AZ, and that risk is purely theoretical and unproven.
    So that brings us to the market potential of this new test. Other than as a laboratory tool for scientists
    who are developing drugs, this test can be nothing more than a way of
    generating fear among the public. It also could be paired with
    unproven products, assuming there is an unregulated supplement that
    affects the unvalidated biomarker behind the test.
    Full disclosure: My father suffered through a horrible fourteen-year
    decline with degenerative AZ that began when he was 62. I have a
    vested interest in believing it was his daily exposure to high levels
    of unvented hydrocarbons in the factory where he spent the majority of
    his working life as a process engineer. There’s some evidence to
    support my theory. His brother, my uncle, didn’t begin suffering the
    symptoms of what we used to call senility until he was well past 80.
    He was a school teacher.

  3. Merrill–
    I think you’re right. This should be seen a laboratory tool for scientists trying to understand the disease. But if brought to market, I’m afraid test would, as you say, “generate fear among the public.” And very likely, “It also could be paired with
    unproven products, assuming there is an unregulated supplement that affects the unvalidated biomarker behind the test.”

  4. Everyone speaks of how it will affect somebody else.
    Would you want to bankrupt your family, your spouse, while existing in an unthinking state? Diapered, not knowing anything? Tied into a chair until your body joins your mind in death inch by inch? Not me. I’ll start saving my meds. There are worse things than death, that’s for sure.

  5. William–
    I agree completely.
    This is an example of
    why we need better laws on
    euthanasia.
    They need to be very carefully constructed, of course, and limited to extreme situations. And I think the patient has to be well enough to participate in the decision. This shouldn’t be decided simply by a doctor and a relative.
    Two physicians (who don’t know each other) should sign off on the patient’s competence when making the decision. And ideally, a loved one would be involved.
    But there are, indeed, things I fear far more than death. And outliving my mind is at the top of the list.

  6. William, some of what you say in your comment above may or may not happen with Alzheimer’s. I speak not from a medical background but as a caregiver who took care of my mother for over 12 years in my home until she died from end stage Alzheimer’s.
    I can promise you there was not even one day ever where she was tied to a chair. It was really pretty bad the last 1-2 years but prior to that I think she was not uncomfortable with her life or her surroundings.
    I never knew exactly where she was in her mind, but I do know that where ever it was, it was not always unpleasant. Sometimes we do them a grave injustice when we only talk about how bad it is. End stage is BAD. But, So is endstage lung cancer, coronary disease and multiple sclerosis.
    It is a very long, seemingly non ending road from early ALZ, through end stage, but not all stages are bad. It is what you make of it and how you treat your loved one who has it, that makes the difference.
    Peole talk about killing themself if they are diagnosed with ALZ yet those same people will do no such talk of dying of other illnesses that are even more painful than ALZ.

  7. Cathy–
    It sounds to me that you were a very fine care-giver. Your mother was extremely lucky.
    And I do believe you that the final stage of Alzheimer’s was the really tough part–and that some patients are quite calm during much of the disease.
    My guess (based on what you say) is that you were probably pretty calm, which probably created a calm environment of your mother.
    Some caregivers are so frustrated–especially spouses–that perhaps the patient feels that frustration. (Here, I’m simply guessing.)
    In terms of what type of death a person most fears (and would consider suicide so as to avoid that death), I believe that varies greatly depending on the individual’s temperament, values, priorities and greatest fears . . .

  8. Cathy–
    It sounds to me that you were a very fine care-giver. Your mother was extremely lucky.
    And I do believe you that the final stage of Alzheimer’s was the really tough part–and that some patients are quite calm during much of the disease.
    My guess (based on what you say) is that you were probably pretty calm, which probably created a calm environment of your mother.
    Some caregivers are so frustrated–especially spouses–that perhaps the patient feels that frustration. (Here, I’m simply guessing.)
    In terms of what type of death a person most fears (and would consider suicide so as to avoid that death), I believe that varies greatly depending on the individual’s temperament, values, priorities and greatest fears . . .