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A little more old 2000 history about my Mifepristone battle to pass on please

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  • anne91547@aol.com
    Dear Good People, These letters below are old news now, it was quite an uproar in 2000, but after the 9/11 attack it got put on a back burner, just like
    Message 1 of 1 , Nov 4 1:08 AM
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      Dear Good People,

      These letters below are old news now, it was quite an uproar in 2000, but
      after the 9/11 attack it got put on a back burner, just like federal embryonic
      stem cell research. When the FDA did finally approve Mifepristone as totally
      safe for abortion in 2000 they did include a specific dreadful restriction that
      only a surgical abortionist doctor could prescribe this drug for anyone, then
      they allowed many pharmacists to not stock or deliver this drug product even
      if the woman patient had a prescription from a doctor, if the pharmacist felt
      it was against their personal faith.

      Believe you me, we do not live in a truly free country anymore when certain
      religious conservative groups can dominate medical science and women's personal
      basic health care decisions and cancer care in this manner.

      My doctor and I had to get an IND individual clinical trial FDA approval and
      my hospital IRB Institutional Review Board approval which took a full year of
      red tape paperwork and legal negotiations before I was allowed to take this
      drug again in FEb 2005 which had helped my tumor remain stable, no change,
      before in a National Cancer Institute Phase 3 clinical trial for three years.

      A drug does not get to a phase 3 trial of a US government study unless it has
      already had some significant value for some subset of patients in the two
      previous required government trials. It might help primarily those like me with
      low grade meningioma, who have not had any radiation yet. I believe,
      radiotherapy scrambles the DNA in the tumor cells, perhaps causing further mutations
      in any remaining tumor cells or healthy cells in the margins of radiation near
      the original tumor. Then the drug can not imitate the original natural hormone
      receptor selection process as easily on these further mutated cells.

      I had a lot of good support and help from the current brain tumor community
      as you can see below, but many people decided Mifepristone, was just not their
      problem anymore after it was approved for abortion in 2000 and didn't even
      know about the dreadful extra restrictions placed on its off label use by some
      appointed officials in the fine print.

      Its therapeutic value for meningioma patients and other types of progesterone
      receptor breast cancer, endometriosis and uterine fibroids is still being poo
      pooed by many cancer professionals and medical doctors...who may not have
      read enough recent literature and the pharma drug companies, big and small, who
      know this cheap cost effective medical reproductive drug (without any added
      female hormones) would cut into the huge profit margins for their other popular
      female hormone replacement and birth control products.

      The current US patent for mifepristone has to run out...I hope someday... how
      much do most people care about the future health of thousands of mostly
      middle-aged men and woman living with a meningioma brain tumor? Especially if they
      are not thinking about them as potential second or third trophy wives or
      husbands? lol

      Why don't medical doctors consider using this mifepristone drug as an early
      alternative (before invasive surgery or brain radiation) while many meningioma
      patients are on watch and wait anyway to see if it grows at all? It could
      potentially save many of these meningioma patients without any serious symptoms
      from the risk of serious neurological deficits from treatment side effects,
      especially since the medication is safe and side effects are only temporary. I
      thought the doctor's medical oath was to first do no harm...even if they might
      lose some potential customers.

      The letters below are old 2000 news

      Click Here For Index Of Back Issues

      Clinical Trials And Noteworthy Treatment For Brain Tumors

      Issue #26 9/8/00
      Welcome to the VirtualTrials Newsletter!

      The North American Brain Tumor Coalition (NABTC) has asked us to help them
      with a letter writing campaign. Details are on our website at:
      This is a very important issue. The FDA is considering approving the drug
      mifepristone (which used to be called RU-486), for use in abortions. This drug
      also has a place in the treatment of some brain tumors, such as meningiomas and
      any other types of cancer that have progesterone receptors. The FDA is
      considering a restriction on the drug that would make it impossible for oncologists
      to use it on cancer patients. The NABTC (and we agree) feel that IF the drug
      is approved, oncologists should be able to use it off-label for brain tumor
      patients, just like many other drugs are used off-label. For example, the drug
      Thalidomide is approved for the treatment of Leprosy, but many oncologists are
      using it for brain tumors.
      If we let the FDA get away with this now, it will create a precedent that
      may be used in the future to restrict off-label usage of drugs. Brain tumors are
      relatively rare. Meningiomas are a rare sub-group of brain tumors. Most
      meningioma patients can be successfully treated with surgery and radiation. The
      ones that fail surgery and radiation sometimes respond to mifepristone, but there
      are few other options. NO drug company would ever spend the money needed to
      get a drug approved for this small group of patients, so they depend on
      off-label use of drugs.
      Everyone has to participate in this. Get a few of your friends to mail the
      letters also. We need the FDA to know that brain tumor patients are now
      organized as well as the AIDS activists were in the 80s, and that we will fight to get
      access to the drugs that we need. We have to stick together. Even if you
      don't have a meningioma, send the letters! The next campaign might affect you
      directly, and our entire community will help you.
      The Patient Advisory Committee of the David A. Nass, Jr. Memorial Foundation
      and The Musella Foundation For Brain Tumor Research and Information would
      like to inform you of a letter writing campaign for grassroots advocacy initiated
      by the North American Brain Tumor Coalition (NABTC). We support the NABTC in
      this effort and set forth below is the background provided by the NABTC:

      DATE: August 10, 2000
      TO: Brain Tumor Advocates
      FROM: North American Brain Tumor Coalition
      RE: Action Needed to Ensure Access to Potential Treatment for Meningioma

      The Food and Drug Administration is currently considering approval for
      mifepristone, the drug formerly known as RU-486. This drug has shown potential use
      as a treatment for meningioma. However, because its pending approval at the
      FDA is for another purpose, the Agency is reportedly considering restricting
      physician access to the drug. Under the reported terms of restricted access, only
      doctors currently performing surgical abortions would be permitted to
      prescribe the drug. This would obviously prevent oncologists and other physicians
      treating brain tumor patients from prescribing the drug.
      We are requesting that patients, their families and friends send the
      following letter (or one of your own creation, should you choose), to Dr. Jane Henney,
      FDA Commissioner, with a copy to Patty Delaney, of FDA's Cancer Liaison
      Program. The letter to Dr. Henney would preferably be sent by regular mail, but can
      also be sent by email (jhenney@...); Ms. Delaney can be reached by fax
      (301.443.4555) or email (pdelaney@...).
      Thank you in advance for your action on this important matter.

      Click HERE for sample letter

      Please send the letter even if you do not have a meningioma. This is an
      issue that impacts all cancer patients. There are adverse implications in denying
      oncologists' access to an approved drug as a potential treatment for brain
      tumor, or other cancers that the drug may be found to be effective. The issue
      here is solely the appropriate regulatory mechanism so that oncologists have
      ready access to an approved drug for the treatment of brain tumor(s) and breast
      cancer in accordance with established medical standards and practice.
      Thank you for taking action on this matter and caring to make the

      It is still a viable medical treatment option for meningiomas and some breast
      cancers driven by progesterone, but it is also a political "hot potato" just
      like embryonic stem cell research.

      Unless you choose to vote for candidates this week who have said they support
      a woman's right to choose her own doctor, choose her own medical care and
      progesterone hormone modulating compounds for her own personal reproductive
      health plan we do not have the democratic freedoms given equally to us all by our
      own US Constitution. See ratings below


      And please elect the officials below who have agreed to allow our qualified
      medical scientists to do their job with the best laboratory specimens available
      which are now 500,000 excess surplus lab frozen embryo specimens, not people
      at all.


      These so called "souls on ice" are just "cold cash" because they are still
      allowed to be bought and sold freely as surplus medical waste products to
      private investment entrepreneurs in this country. Bush didn't stop his deep pocket
      investors from this type of embryonic research with his personal veto or his
      control of FDA approval processes by his personal political appointments. He
      just made it much harder for decent people who are very sick, terminally ill or
      trying to deal with unexpected pregnancy to benefit from modern medical science
      by overriding the normal regulatory operations and functions of the FDA, the
      National Institute of Health, the National Cancer Insititute and NINDS.

      Now, pass this on and please go vote, one person can make a difference!

      Keep your faith, cherish your reason, treasure your mind and hold to your own
      good purpose

      Please scroll down the left side column on my journal below and look for my
      list of current personal musings on these GREY MATTERS of interest to me and 28
      questions to ask about any low-grade brain tumor
      GBYAY Anne McGinnis Breen

      [Non-text portions of this message have been removed]
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