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Thread: Making lemonade from molehills

  1. #61
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    Quote Originally Posted by Al View Post
    Note to all: Regarding my semi-rant in the previous post, I really am hopeful that we can, in some small way--or, even better, in a huge, colossal way, influence public policy. Autoimmune diseases represent a gigantic expense to society, and thus a major drag on its progress, on several levels. To blow the specter off, for whatever reason, goes against enlightened self-interest. Ignorance leads, at the very least, to a lot of carcasses for the (as yet) undiagnosed to trip over.

    Al
    Hence my attempt to bring awareness to AI diseases as a whole. If people don't think they can be affected in some way (1 in 30 to 40,000 is a long shot) they wont do anything about it. If they know that being hit by an autoimmune disease (pick one, any one) has a 1 in 5 chance of happening, the mindset is suddenly different. I think that's our answer. Here are a couple of quotes from AARDA (American Autoimmune Related Disease Association - aarda.org)

    "Autoimmune disease ...faces critical obstacles in diagnosis and treatment.
    • Symptoms cross many specialties and can affect all body organs.
    • Medical education provides minimal learning about autoimmune disease.
    • Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
    • Initial symptoms are often intermittent and unspecific until the disease becomes acute.
    • Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed."

    " Autoimmune disease ...offers surprising statistical comparisons with other disease groups.
    • NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
    • NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).
    • NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
    • The NIH Autoimmune Diseases Research Plan states; "Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery."
    • According to the Department of Health and Human Services' Office of Women's Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women's Health Information Center."

    wow, hey? mindblowing!!!!!

    So the way I see it is the only way to get anything significant done is to look past our glass cage and see (and try and help) all the other people stuck in glass cages around us - there are many apparently. MANY! Together we can make a difference, and where's the difference, where's the answer - the etiology of ALL AI disease. The common thread. I'm a believer, and I truly with all my heart think we can do something big together.

    "First question is: How does autoimmunity arise? What causes the body to produce an immune response to itself? What are the circumstances, what are the mechanisms, what are the triggers for the phenomenon that we call autoimmunity? That's one question. That's a very basic question that involves biology, chemistry, even biophysics. It requires a deep understanding of the immune system. We need to know a lot more about how the body produces immunity reactions. We know a great deal, but there are still enormous voids in our understanding. We must know that in order to understand how the body normally distinguishes self from non-self.
    The second question is: What are the factors in the autoimmune response that sometimes cause disease? These are the two critical questions that are the topics of basic research. Sometimes the feeling is expressed that basic research is scientists fooling around in the laboratory doing things that are unimportant. Well, there is nothing that is unimportant about these questions. They are absolutely critical. We must understand that if we are ever going to develop effective treatments or, more important, cures for preventing autoimmune disease, we must understand them. Just as we would never have been able to control infectious diseases until we found the bacteria or viruses that cause diseases, so we cannot deal effectively with autoimmune disease until we understand its cause." Noel R. Rose, M.D., Ph.D.
    Chairman Emeritus, AARDA National Scientific Advisory Board; Professor of Pathology and of Molecular Microbiology and Immunology; Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD

  2. #62
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    Quote Originally Posted by marta View Post
    Here are a couple of quotes from AARDA (American Autoimmune Related Disease Association - aarda.org)

    " Autoimmune disease ...offers surprising statistical comparisons with other disease groups.
    • NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
    • NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).


    Very interesting, thanks for posting this Marta!
    This website :: American Autoimmune Related Diseases Association, Inc :: offers a lot of information indeed!

    I never saw this figures before. Would be interesting though to see how much people have Wegeners, on the whole group of AI-disease-sufferers.

    I totally agree that one of the most important questions regarding auto-immune-disease is:
    How does the body distinguish self from non-self!

  3. #63
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    Those numbers are amazing... and heartbreaking. Thanks for posting, Marta

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    As the originator of this thread, I am pumped that it has taken the tangent it has, weaving together all autoimmune diseases in a common fabric. And the original thread title makes even more sense to me now. Thanks to all. In particular, Marta's thoughtful post suggests conceptual underlayment for a possible course of action. Thanks, too, for posting the link to AARDA. For me, it would be the best Christmas gift ever, if we were to influence public policy on this issue.

    Al

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