MY dear Meningimates,
My main goal is to replace fear with confidence and enough medical knowledge to help the doctors of my dear meningimates, male and female, who want to try a safe effective drug therapy to possibly block low grade meningioma regrowth that has no risks of permanent brain injury or blood clots. I also want women to know it works safely to control and shrink uterine fibroids 50 % without the risks of major abdominal surgery.
This detailed longterm use research report of Mifepristone for two female meningioma patients below came out in 2004 and I have a similarly located left sphenoid recurrent meningioma tumor affecting my vision in one eye and in 2004 I had already had two craniotomies in 1986 and 2000 and I did not want the recommended six weeks of five days a week standard brain IMRT radiation, as if my non malignant low grade 2 brain tumor condition was real brain cancer.
http://www.nature.com/eye/journal/v18/n9/full/6701370a.html
My tumor had been stable for three years before in a similar US 1992 NCI SWOG 9005 trial of mifepristone for meningioma by Doctor Steven Grunberg I was in from 1996-1999 and during that time I had no new tumor symptoms or bad side effects. Dr Grunberg published another clinical trial report in 2006 below that says it also helped some male meningioma patients.
So I wanted to take this drug again, just like these two ladies above . I generally felt better while I was on the drug and I already had a total hysterectomy in 1992 for fibroids so I did not see any risk to me of endometrial hyperplasia like one lady had in this report and three in the other.
I was able to start taking this drug again in Feb 2005 after a delay of one year to complete all the FDA and IRB legal paper work to get my own individual clinical drug trial of mifepristone for meningioma. And Dr Grunberg published his additional PUB MED report below in 2006.
• Long-term administration of mifepristone (RU486): clinical tolerance ...
www.ncbi.nlm.nih.gov/pubmed/17162554
by SM Grunberg - 2006 - Cited by 47 - Related articles
2006 Dec;24(8):727-33. ... Grunberg SM, Weiss MH, Russell CA, Spitz IM, Ahmadi J, Sadun A, Sitruk-Ware R. Division of Hematology/Oncology, University of Vermont College of Medicine, Burlington, Vermont, USA. steven.grunberg@uvm.edu ...
Please feel free to take these reports to your own doctor. One of our m readers recently told me that three different doctors all told her there was an increased risk of blood clots with Mifepristone. Baloney!! None of these patients had any problem with blood clots and neither do I after taking this safe medication for six years the second time.
I have recently read it may be true of YAZ or other new drugs used for birth control, but generic Mifepristone (brand name Mifeprex the Early Option Pill) is not the same as these newer drugs. I believe all the scary possible side effects we hear about when good old Mifepistone is used as the first part of an early medical abortion are actually from the other drug usually/sometimes? given during a regular first trimester medical abortion. Certainly not when low dose Mifepristone alone is used for daily or emergency birth control. The small daily dose I take does not cause any bleeding problems, in fact I have read in the research below where very low daily dose Mifepristone fights anemia and stops uterine blood loss completely and safely when it is used to treat fibroids.
• Rochester Study Rolls Out RU-486 to Treat Uterine Fibroids - News ...
www.urmc.rochester.edu › NewsroomCached - Similar
Rochester Study Rolls Out RU-486 to Treat Uterine Fibroids. December 06, 2006. Low doses of the drug mifepristone shrink uterine fibroid tumors and greatly ...
• Pathology Study Tracks Uterine Changes with Mifepristone - News ...
www.urmc.rochester.edu › NewsroomCached
Mar 7, 2011 – URMC Research Confirms Possible Use of Drug for Painful ...
Show more results from rochester.edu
•
• Pathology study tracks uterine changes with mifepristone
www.sciencedaily.com/releases/2011/03/110307124927.htmCached
Mar 7, 2011 – Rochester Study Rolls Out RU-486 To Treat Uterine Fibroids (Dec. 7, 2006) — Low doses of the drug mifepristone shrink uterine fibroid tumors ...
These extra pathology study reports showed no pre cancerous changes to the uterus with low dose Mifepristone use.
I think her three doctors are all wrong about blood clots too with old generic Mifepristone because of this FDA report I googled last week.
The CBS Evening News (10/27, story 9, 0:30, Pelley) reported, "The FDA is raising serious questions tonight about the safety of a popular birth control pill. It says the pill, called Yaz [drospirenone and ethinyl estradiol], puts women at a 75% greater risk of blood clots than older forms of birth control."
The AP (10/28) reports the FDA says "several new birth control drugs, including the Bayer pill Yaz, appear to increase the risk of dangerous blood clots more than older medications." Study results released by the FDA "reviewed the medical history of more than 800,000 American women taking different forms of birth control between 2001 and 2007."
In a separate story, the AP (10/28) reports the FDA also saw "higher complications in women using ethinyl estradiol and norelgestromin [Ortho Evra] patch from Johnson & Johnson and ethinyl estradiol and etonogestrel [Nuvaring] vaginal ring from Merck & Co. Inc." Recent studies show "differing conclusions on the risks of newer birth control pills." For example, "two studies published in 2007...did not find any difference in blood clotting between the two comparable groups."
MedPage Today (10/28, Gever) also reports, "Compared with hormonal contraceptives with relatively low estrogen doses, norelgestromin/ethinyl estradiol transdermal patch and etonogestrel/estradiol vaginal ring products were both associated with increased risk for venous thromboembolism (VTE), as were birth control pills containing drospirenone," according to the retrospective database analysis.
HealthDay (10/28) reports, "For now, the FDA is not advising that most women switch to another form of contraception." The FDA said, "If your birth control pill contains drospirenone, do not stop taking it without first talking to your health care professional." But "contact your health care professional immediately if you develop any symptoms of blood clots."
Bloomberg News (10/28, Bettelheim, Kresge) reports on study findings in Denmark published in the British Medical Journal this week, which found that "users of oral contraceptives with desogestrel, gestodene, or drospirenone were at least at twice the risk of venous thromboembolism compared with users of oral contraceptives with levonorgestrel."
We live in a free country with basic human rights for all people, therefore I want the US Congress to get out and stay out of private doctor/patient relationships. I want Congress to stop passing laws dictating to our well qualified medical doctors what FDA approved safe old generic drug they can not prescribe for their own patients to treat and improve their quality of life for rare chronic conditions.
Please ask them to stop procrastinating, ask them to read the Amendment to Medicare Part D for Drug Parity in HR 1055, then co sponsor it to get a bill in the Senate and pass HR 1055 in both houses in 2011.
And I hope you will read about HR 1055 and use my congressional zip code widget in the left sidebar to find your members of congress and tell them whether or not you want to have the freedom and right to the safest medical care from your qualified and well informed doctors without political and legal interference by others in your personal health care decisions.
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
Please scroll all the way down to my first two blog entries for my list of 28 questions to ask your medical team about brain tumor treatments plus my personal meningioma alternative drug therapy RU486 Mifepristone
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!
Showing posts with label brain tumor. Show all posts
Showing posts with label brain tumor. Show all posts
Tuesday, November 8, 2011
Tuesday, April 12, 2011
Please help me and others get this HR 1055 bill for MEDICARE drug coverage
Thornberry Introduces Bipartisan Bill To Let Patients Get the Medications They Need
I just got this announcement from NORD (National Organization for Rare Diseases). Some brain tumor patients need off label cancer drugs that have not been officially FDA approved in clinical trials as treatment for their condition. For example, this off label medical drug coverage is needed to get affordable mifepristone for meningioma treatment for myself and my dear meningimates. The cost of my mifepristone treatment has tripled in the past five years which seems very strange for an old generic drug that might help some specific type of cancer patients live longer and feel better.
I need brain tumor community advocates to help get this same bill introduced in the Senate as well by writing to their state senators.
Please read my blog post about the recent death from a meningioma brain tumor of the real "Norma Rae", not Sally Fields who played her in the famous movie by that name, since there is no standard drug treatment for this type of primary brain tumor.
Please write to your state senators, tell other brain tumor patients, doctors and other cancer organizations about this new bill HR 1055.
Washington, Mar 18, 2011
U.S. Representatives Mac Thornberry (R-TX) and Russ Carnahan (D-MO) today announced introduction of the bipartisan Part D Off-Label Prescription Parity Act. The bill, H.R. 1055, would allow Medicare Part D carriers to cover the "off-label" use of drugs prescribed to people living with chronic diseases when its use is supported by medical experts.
Currently, many Medicare consumers with serious and sometimes life-threatening conditions are unable to access safe and effective medications under Medicare Part D. Only Medicare Part B and Part D medications used to treat cancer, but not other medical conditions, are eligible for coverage.
“Doctors and patients should be able to choose the safest and most effective medications for their treatments,” said Rep. Thornberry. “Right now, the requirements for coverage of the off-label use of a drug are burdensome and often result in Medicare patients not being able to get the drug coverage they need. Our bill helps fix that problem,” continued Thornberry.
The bill would give Part D plans the same flexibility allowed under other parts of the Medicare program and in the commercial insurance market.
“When we talk about setting aside our differences to solve problems, this is exactly what we mean,” said Rep. Carnahan. “This common-sense bipartisan legislation will get life-saving medicines to those who need them.”
Off-label prescribing is widespread in the medical community as an essential means of providing patients with optimal medical care. Under Medicare Part B, CMS allows carriers to consider “the major drug compendia, authoritative medical literature and/or accepted standards of medical practice” in determining whether an off-label use is medically accepted. In 2008, through the Medicare Improvements for Patients and Providers Act (MIPPA), Congress required CMS to apply the Part B standard to Part D cancer drugs used off-label.
“The Part D Off-Label Prescription Parity Act takes a balanced approach to keeping patients safe from improper prescribing while allowing access to the most up-to-date treatments available, “ said Joe Baker, President of the Medicare Rights Center. “Doctors routinely prescribe medications for uses other than those on the FDA label, according to their professional judgment and evidence in the medical literature. We are grateful Congressmen Thornberry and Carnahan have re-introduced this important bill,” he continued.
The bill is also supported by the National Multiple Sclerosis Society, the Medicare Access for Patients-Rx (MAPRx), as well as:
The AIDS Institute
The ALS Association
The Alzheimer’s Association
American Academy of Neurology
American Autoimmune Related Diseases Association
American Society of Consultant Pharmacists
Arthritis Foundation
Center for Medicare Advocacy
Easter Seals
Hemophilia Federation of America
The Lupus Foundation of America
Men’s Health Network
Mental Health America
National Alliance on Mental Illness
National Council for Community Behavioral Healthcare
National Grange of the Order of Patrons of Husbandry
National Health Council
National Spinal Cord Injury Association
National Organization for Rare Disorders (NORD)
RetireSafe
United Spinal Association
# # #
Additional reading about Medicare news
http://www.medpagetoday.com/PublicHealthPolicy/Medicare/
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
I just got this announcement from NORD (National Organization for Rare Diseases). Some brain tumor patients need off label cancer drugs that have not been officially FDA approved in clinical trials as treatment for their condition. For example, this off label medical drug coverage is needed to get affordable mifepristone for meningioma treatment for myself and my dear meningimates. The cost of my mifepristone treatment has tripled in the past five years which seems very strange for an old generic drug that might help some specific type of cancer patients live longer and feel better.
I need brain tumor community advocates to help get this same bill introduced in the Senate as well by writing to their state senators.
Please read my blog post about the recent death from a meningioma brain tumor of the real "Norma Rae", not Sally Fields who played her in the famous movie by that name, since there is no standard drug treatment for this type of primary brain tumor.
Please write to your state senators, tell other brain tumor patients, doctors and other cancer organizations about this new bill HR 1055.
Washington, Mar 18, 2011
U.S. Representatives Mac Thornberry (R-TX) and Russ Carnahan (D-MO) today announced introduction of the bipartisan Part D Off-Label Prescription Parity Act. The bill, H.R. 1055, would allow Medicare Part D carriers to cover the "off-label" use of drugs prescribed to people living with chronic diseases when its use is supported by medical experts.
Currently, many Medicare consumers with serious and sometimes life-threatening conditions are unable to access safe and effective medications under Medicare Part D. Only Medicare Part B and Part D medications used to treat cancer, but not other medical conditions, are eligible for coverage.
“Doctors and patients should be able to choose the safest and most effective medications for their treatments,” said Rep. Thornberry. “Right now, the requirements for coverage of the off-label use of a drug are burdensome and often result in Medicare patients not being able to get the drug coverage they need. Our bill helps fix that problem,” continued Thornberry.
The bill would give Part D plans the same flexibility allowed under other parts of the Medicare program and in the commercial insurance market.
“When we talk about setting aside our differences to solve problems, this is exactly what we mean,” said Rep. Carnahan. “This common-sense bipartisan legislation will get life-saving medicines to those who need them.”
Off-label prescribing is widespread in the medical community as an essential means of providing patients with optimal medical care. Under Medicare Part B, CMS allows carriers to consider “the major drug compendia, authoritative medical literature and/or accepted standards of medical practice” in determining whether an off-label use is medically accepted. In 2008, through the Medicare Improvements for Patients and Providers Act (MIPPA), Congress required CMS to apply the Part B standard to Part D cancer drugs used off-label.
“The Part D Off-Label Prescription Parity Act takes a balanced approach to keeping patients safe from improper prescribing while allowing access to the most up-to-date treatments available, “ said Joe Baker, President of the Medicare Rights Center. “Doctors routinely prescribe medications for uses other than those on the FDA label, according to their professional judgment and evidence in the medical literature. We are grateful Congressmen Thornberry and Carnahan have re-introduced this important bill,” he continued.
The bill is also supported by the National Multiple Sclerosis Society, the Medicare Access for Patients-Rx (MAPRx), as well as:
The AIDS Institute
The ALS Association
The Alzheimer’s Association
American Academy of Neurology
American Autoimmune Related Diseases Association
American Society of Consultant Pharmacists
Arthritis Foundation
Center for Medicare Advocacy
Easter Seals
Hemophilia Federation of America
The Lupus Foundation of America
Men’s Health Network
Mental Health America
National Alliance on Mental Illness
National Council for Community Behavioral Healthcare
National Grange of the Order of Patrons of Husbandry
National Health Council
National Spinal Cord Injury Association
National Organization for Rare Disorders (NORD)
RetireSafe
United Spinal Association
# # #
Additional reading about Medicare news
http://www.medpagetoday.com/PublicHealthPolicy/Medicare/
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
Friday, February 26, 2010
Norma Rae's real story ends with meningioma
Dear Good People
The real Norma Rae, Crystal Lee Sutton's life ends with more insurance and treatment questions than answers, The fine print in the health care legal documents are too complex for most of us to figure out and it depends on how smart you are, who you are, or how much money you have, or your family has connections to good doctors or, what medical attorneys know to help people navigate the health care system to figure out how to get an exception to almost any exemption. The two party system of government is not protecting ordinary working people, it is protecting the wealthy investors who hide behind corporate shields so they are not personally responsible for the damage and death they cause and/or allow to happen. Senators are not working for all Americans or unemployed people who do not have a union job or employee benefits. I have heard even union workers might not get enough hours and coverage paid if they do not follow the party line.
I hope responsible investigative reporters and "truthseekers like me" will continue look for more details on her treatment plan and her insurance company.
What kind of health insurance policy did she have? I read online somewhere that it had an annual cap of $100.000 per year and she was 67 years old when she was first diagnosed. I wonder why not, or if she was actually on MEDICARE? We need more facts instead of the typical media hype for dummies that we get even from senators on both sides, because they are not our our side.
There is no approved FDA chemotherapy for malignant meningioma because the mega big corporations of the pharma industry and the NCI Adult Brain Tumor Consortium have decided not spent our tax money on research studying this usually slow growing brain tumor that strikes women teice as often as men, because it is generally considered rare and benign. But our meningiomas are twice as common as the deadly type that killed Ted Kennedy and they hasppen twice as often to women. And surviving two brain surgeries exactly a year apart is a remarkable feat for anyone, especially someone her age. I would have expected that once her doctor found out it was malignant after her first surgery she would have been treated with brain radiation therapy and chemo right away, why wait a year and why another surgery at her age? Why didn't she get radiation therapy and some chemo a year earlier, like other malignant brain tunor patients? Did she chose not to have brain radiation? Was it recommended for her case? I would like to know waht actually happened here before Democrats try to use her as a poster child for Obamacare. According to her age, she was medicare eligible for the past three years. Secondly, We do not have enough information. What was the chemo drug she was offered? Was it experimental? or not normally used or considered effective for this type of tumor? Or was it a simple coding error?
Do we know what drug she would have been given if she was on MEDICARE? Could she even get an investigational drug like I am on, if she was on MEDICARE or if she had a private policy, I doubt the drug I take was even mentioned to her by her doctors. I can't get it from my private insurance UNITED HEALTH CARE and will our government pay for it once I do get on MEDICARE? I got it for free from the NCI in the 1990's. Or will I have to stop taking it, if we can no longer afford an extra $6,000 a year for my care? And I had to wait a whole year for the paperwork while my vision got worse before I could get for myself, not just two months. IS it big mega corporation profit? bribes and/or bonuses? I wish I knew all the answers, but I want the federal government plan that retired employees like Dick Cheney has, he got such good care he has survived 5 heart attacks intact, although I thought he had some brain cells missing even when he shot that guy while out hunting, many people do not even survive one.
Yes, this is very personal for me, that's why I am such a fanatic about health care issues and education and information. Reading is fundamental to survive in the world today. I guess they will probably try to deny me approval again, but if I only have to wait two months to get it that will be better than the situation while I was on private insurance. I certainly do not have all the answers, but I can keep on asking probing questions because this is so vital to my own health and my future, because inquiring minds want to know more. I believe there is no such thing as a dumb question as long as we are polite, and some times we might need to be persistent. It is incorrect answers or silence without any answer that hurts us the most. GBYAY Anne McGinnis Breen
The real Norma Rae, Crystal Lee Sutton's life ends with more insurance and treatment questions than answers, The fine print in the health care legal documents are too complex for most of us to figure out and it depends on how smart you are, who you are, or how much money you have, or your family has connections to good doctors or, what medical attorneys know to help people navigate the health care system to figure out how to get an exception to almost any exemption. The two party system of government is not protecting ordinary working people, it is protecting the wealthy investors who hide behind corporate shields so they are not personally responsible for the damage and death they cause and/or allow to happen. Senators are not working for all Americans or unemployed people who do not have a union job or employee benefits. I have heard even union workers might not get enough hours and coverage paid if they do not follow the party line.
I hope responsible investigative reporters and "truthseekers like me" will continue look for more details on her treatment plan and her insurance company.
What kind of health insurance policy did she have? I read online somewhere that it had an annual cap of $100.000 per year and she was 67 years old when she was first diagnosed. I wonder why not, or if she was actually on MEDICARE? We need more facts instead of the typical media hype for dummies that we get even from senators on both sides, because they are not our our side.
There is no approved FDA chemotherapy for malignant meningioma because the mega big corporations of the pharma industry and the NCI Adult Brain Tumor Consortium have decided not spent our tax money on research studying this usually slow growing brain tumor that strikes women teice as often as men, because it is generally considered rare and benign. But our meningiomas are twice as common as the deadly type that killed Ted Kennedy and they hasppen twice as often to women. And surviving two brain surgeries exactly a year apart is a remarkable feat for anyone, especially someone her age. I would have expected that once her doctor found out it was malignant after her first surgery she would have been treated with brain radiation therapy and chemo right away, why wait a year and why another surgery at her age? Why didn't she get radiation therapy and some chemo a year earlier, like other malignant brain tunor patients? Did she chose not to have brain radiation? Was it recommended for her case? I would like to know waht actually happened here before Democrats try to use her as a poster child for Obamacare. According to her age, she was medicare eligible for the past three years. Secondly, We do not have enough information. What was the chemo drug she was offered? Was it experimental? or not normally used or considered effective for this type of tumor? Or was it a simple coding error?
Do we know what drug she would have been given if she was on MEDICARE? Could she even get an investigational drug like I am on, if she was on MEDICARE or if she had a private policy, I doubt the drug I take was even mentioned to her by her doctors. I can't get it from my private insurance UNITED HEALTH CARE and will our government pay for it once I do get on MEDICARE? I got it for free from the NCI in the 1990's. Or will I have to stop taking it, if we can no longer afford an extra $6,000 a year for my care? And I had to wait a whole year for the paperwork while my vision got worse before I could get for myself, not just two months. IS it big mega corporation profit? bribes and/or bonuses? I wish I knew all the answers, but I want the federal government plan that retired employees like Dick Cheney has, he got such good care he has survived 5 heart attacks intact, although I thought he had some brain cells missing even when he shot that guy while out hunting, many people do not even survive one.
Yes, this is very personal for me, that's why I am such a fanatic about health care issues and education and information. Reading is fundamental to survive in the world today. I guess they will probably try to deny me approval again, but if I only have to wait two months to get it that will be better than the situation while I was on private insurance. I certainly do not have all the answers, but I can keep on asking probing questions because this is so vital to my own health and my future, because inquiring minds want to know more. I believe there is no such thing as a dumb question as long as we are polite, and some times we might need to be persistent. It is incorrect answers or silence without any answer that hurts us the most. GBYAY Anne McGinnis Breen
Saturday, January 3, 2009
Hello Good People
Welcome to my blog I will return with some of my previously saved rambling articles and the list of questions to ask your medical team about brain tumors Ta Ta for now GBYAY Anne
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