Saturday, April 30, 2011

Meningioma webinar info and patient questions

My dear Meningimates,
(My personal affectionate term for us Meningioma survivors and our loved ones) This is the NBTF followup patient question section and the Meningioma webinar if you missed it.

Great information for those whose lives have been affected by meningioma. You will find answers to some questions for which it is hard to find straight forward answers. There are also links to research articles
in response to some of the questions.

Thank you NBTS for posting this on their website and to all who submitted such good questions for the discussion.

And my special thanks to Cindi Rixey Scott who posted this on another braintrust m list GBYAY Anne

Friday, April 29, 2011

Good information about new surgeries for meningioma

Except that new meningiomas are now being diagnosed in 34% to 37% of all new primary brain tumors, not 20% as this website says.

Wednesday, April 13, 2011

My dear meningioma friend Karen Catlin RIP died April 9, 2011

Karen Catlin, one of our formerly most active online participants since the beginning of Alan's "Meningioma Talk" online groups shared her love, her humor, her knowledge of medical things and her gentle touch and gave us her time and talent for many years after her inital brain radiation therapy in Florida . Her words were a great comfort to many of us in times of medical crisis and during our ongoing bt recovery process.

I just got the call from a longterm friend of hers on Saturday April 9,2012 ... I visited her in early February after she missed the January Florida Bt conference. She was suffering from alot of pain. She had gall bladder surgery in February which didn't eliminate her pain. Afterwards they discovered something else on her chest scans and she had major lung surgery in April. They said it was stage 4 lung cancer and she was not able to recover afterwards, she died after two days in hospice on Saturday.

Our dear sweet meningimate Karen Catlin, 53 from Tampa Florida will be sorely missed by many of our regular online m readers and those who met her frequently in Florida and her many dear friends Fred, Jesse and Alan. I am very sad, my words are inadequate. Karen was my precious roommate every weekend for the past ten Florida Bt conferences since my second brain surgery and her one shot radiation therapy in Florida for her meningioma brain tumor. She always cheered me up, lightened my load and helped me recharge my own batteries, she was energizing, generous and caring of others, she understood their suffering and was comforting. She personally helped care for our meningimate Rick Fels, Fred's son for a long time. She will be greatly missed by her own family, her husband Steve, her son Daniel and many more relatives and good friends. She was a great woman and a good friend in deeds.

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)
United Spinal Association

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Additional reading about Medicare news

GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)