Any News on Congressional Bill?

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maggs
maggs Member Posts: 164
edited March 2014 in Breast Cancer #1
Hummingbyrd,
Have you heard any news about the progress of the new bill on alternative treatment studies?
I hope you are okay and your brother is doing fine, too! Maggs

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  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #2
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    Arm hurts, but is improving slooowly.
    Brother has gone to MDAnderson for tests to see if chemo is working, so all prayers appreciated!
    Senate Bill 1101 which calls for some serious clinical trials on target cell therapy hasn't done anything yet. These are good drugs, not chemo, but not alternative meds either. Is there a Bill out there that focuses on alternative treatment only?
    Love to hear from you! (((HUGS))) hummer
  • llange
    llange Member Posts: 54
    #3
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    hummingbyrd said:

    Arm hurts, but is improving slooowly.
    Brother has gone to MDAnderson for tests to see if chemo is working, so all prayers appreciated!
    Senate Bill 1101 which calls for some serious clinical trials on target cell therapy hasn't done anything yet. These are good drugs, not chemo, but not alternative meds either. Is there a Bill out there that focuses on alternative treatment only?
    Love to hear from you! (((HUGS))) hummer

    I heard on the news yesterday that Congress has appropriated $117M this year alone for research into alternative medicine. I don't know any more details.
    Lisa
  • inkblot
    inkblot Member Posts: 698 Member
    #4
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    hummingbyrd said:

    Arm hurts, but is improving slooowly.
    Brother has gone to MDAnderson for tests to see if chemo is working, so all prayers appreciated!
    Senate Bill 1101 which calls for some serious clinical trials on target cell therapy hasn't done anything yet. These are good drugs, not chemo, but not alternative meds either. Is there a Bill out there that focuses on alternative treatment only?
    Love to hear from you! (((HUGS))) hummer

    Hi Ladies:

    Not aware of any Bills re alternative therapy/trials, Hummer. We'll likely all grow old waiting.

    However, thought some of you may find Congressional Bill HR 742 very interesting. It will require registering with the Secretary of Health, ALL dietary supplement info. The name,
    what's in them, what they do, etc.. Also requires all manufacturer's, marketer's, retailer's, to report any alleged adverse effects. Particulary those suspected of interacting with a "drug". (Likely the verbage refers to traditional Rx drugs) The Bill also gives the Secretary the right of assessing a "registration" fee from all but the smallest businesses in the industry. Sets the same standards for foreign importers of dietary supplements. (Does this mean the raw materials used or just the final product? Vague wording in there) Imagine that. They've found an avenue for taking a piece of the supplement pie, yet every supplement will likely continue to carry the disclaimer: These claims have not been evaluated/assessed by the FDA. Still means zip to the savvy consumer. Except, of course, for those of us who use supplements regularly...we'll likely pay more, as the registration costs must be recouped.

    Note, however, that the financial responsibilty for any testing of the supplement, to determine exactly what it contains, is upon the manufacturer, at the will/request of the Secretary. Mr. Secretary requests the testing be done but no guidelines or protocols for who must test it or how the testing must be certified to the Department's satisfaction. Interesting stuff. Wonder where all this may be going, aside from its garnering funds, via the "registration" fees. The Secretary, Dept. of Health and FDA still do no blanket testing for certifying any supplement, even to content, thereby bearing no responsibility within the supplement industry.

    Go to: www.congress.gov to see Bill detail. (choose "Text of Legislation", to read entirely, once you locate the Bill)

    Love, light and laughter,
    Ink
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #5
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    inkblot said:

    Hi Ladies:

    Not aware of any Bills re alternative therapy/trials, Hummer. We'll likely all grow old waiting.

    However, thought some of you may find Congressional Bill HR 742 very interesting. It will require registering with the Secretary of Health, ALL dietary supplement info. The name,
    what's in them, what they do, etc.. Also requires all manufacturer's, marketer's, retailer's, to report any alleged adverse effects. Particulary those suspected of interacting with a "drug". (Likely the verbage refers to traditional Rx drugs) The Bill also gives the Secretary the right of assessing a "registration" fee from all but the smallest businesses in the industry. Sets the same standards for foreign importers of dietary supplements. (Does this mean the raw materials used or just the final product? Vague wording in there) Imagine that. They've found an avenue for taking a piece of the supplement pie, yet every supplement will likely continue to carry the disclaimer: These claims have not been evaluated/assessed by the FDA. Still means zip to the savvy consumer. Except, of course, for those of us who use supplements regularly...we'll likely pay more, as the registration costs must be recouped.

    Note, however, that the financial responsibilty for any testing of the supplement, to determine exactly what it contains, is upon the manufacturer, at the will/request of the Secretary. Mr. Secretary requests the testing be done but no guidelines or protocols for who must test it or how the testing must be certified to the Department's satisfaction. Interesting stuff. Wonder where all this may be going, aside from its garnering funds, via the "registration" fees. The Secretary, Dept. of Health and FDA still do no blanket testing for certifying any supplement, even to content, thereby bearing no responsibility within the supplement industry.

    Go to: www.congress.gov to see Bill detail. (choose "Text of Legislation", to read entirely, once you locate the Bill)

    Love, light and laughter,
    Ink

    Thanks for the info Ink!
    Very interesting what the govt is trying to pass in regards to "dietary supplements".
    Went to www.congress.gov forgot the bill number, imagine that! LOL so typed in "dietary supplements".
    Got your HR Bill plus Senate Bill 722
    This is a wild one! Way I read it, ANY dietary supplement can be brought under investigation and pulled from the market if someone has an adverse reaction.
    The kicker is...
    THEY DON'T EVEN HAVE TO PROVE THE DIETARY SUPPLEMENT CAUSED THE ADVERSE EVENT!
    Take, take, take...take away our access to alternative therapies, that may actually work, IF they would take the time to test them.
    At this time less than 1% of research funding goes to study alternative therapy.
    The true picture was painted when I read the minutes of one "alternative therapy" study.
    The study focused on palliative care and how 'product X' relieved pain and improved end-of-life quality.
    The question was asked, by a committee member, what if patients go into remission while in this study?
    The answer; that data will not be reported as it will confuse the investigators and alter the goal of the study which is determining patients perception of improved end-of-life quality.
    HELLO?
    Get this man a sign...if I'm dying and this vitamin, herbal remedy or whatever just put my cancer in remission...
    MY QUALITY OF LIFE JUST IMPROVED 100%!
    DUH?! but to him or me?
    He's got the money for the research, a nice executive paying job and I've got the cancer.
    Injustice at it's worst.
    The good news is there is always hope.
    Hope for better drugs, earlier diagnosis, and easier access to medical care.
    Everything is possible for him who believes!
    hummb
  • inkblot
    inkblot Member Posts: 698 Member
    #6
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    hummingbyrd said:

    Thanks for the info Ink!
    Very interesting what the govt is trying to pass in regards to "dietary supplements".
    Went to www.congress.gov forgot the bill number, imagine that! LOL so typed in "dietary supplements".
    Got your HR Bill plus Senate Bill 722
    This is a wild one! Way I read it, ANY dietary supplement can be brought under investigation and pulled from the market if someone has an adverse reaction.
    The kicker is...
    THEY DON'T EVEN HAVE TO PROVE THE DIETARY SUPPLEMENT CAUSED THE ADVERSE EVENT!
    Take, take, take...take away our access to alternative therapies, that may actually work, IF they would take the time to test them.
    At this time less than 1% of research funding goes to study alternative therapy.
    The true picture was painted when I read the minutes of one "alternative therapy" study.
    The study focused on palliative care and how 'product X' relieved pain and improved end-of-life quality.
    The question was asked, by a committee member, what if patients go into remission while in this study?
    The answer; that data will not be reported as it will confuse the investigators and alter the goal of the study which is determining patients perception of improved end-of-life quality.
    HELLO?
    Get this man a sign...if I'm dying and this vitamin, herbal remedy or whatever just put my cancer in remission...
    MY QUALITY OF LIFE JUST IMPROVED 100%!
    DUH?! but to him or me?
    He's got the money for the research, a nice executive paying job and I've got the cancer.
    Injustice at it's worst.
    The good news is there is always hope.
    Hope for better drugs, earlier diagnosis, and easier access to medical care.
    Everything is possible for him who believes!
    hummb

    Good stuff there, Hummer! And thanks for posting and enlightening!

    Let's keep on tracking these bills and when we find proposed bills which are counterproductive and do not serve the interest of the public, fire off letters to our Congressmen, with any supporting evidence, instances, etc., together with our opinions and questions. Can sometimes help them to make better decisions at vote time...particularly those who are not well educated about the bill they're voting on. Also, remember to ask your representative to "show up" for the vote as well. If he/she isn't there, then it becomes a moot point.

    Love, light and laughter,
    Ink

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