Life Raft Group Canada News
AGM 2011
LRG Canada held its 2011 AGM on November 5th in downtown Vancouver at the Coast Coal Harbour Hotel. This provided an opportunity to meet in person, share experiences, and hear about LRG Canada's advocacy efforts on behalf of Canadians with GIST. Click here for the President's report to the 2011 AGM. Attendees included GIST patients and family members who are LRG Canada Members and Board Members from across the country. Prior to the AGM, Dr. Cheng-Han Lee, a GIST pathologist and researcher, presented some of the latest information about GIST diagnosis, genetic markers, mutations, and emerging therapies. Click here to see Dr. Lee's Presentation
Ontario Ministry of Health and Long-Term Care Approves Public Funding of Gleevec for Adjuvant GIST
Click here to see an email received by David Josephy, LRG Canada's President, from the Director of Drug Program Services with the Ontario Ministry of Health & Long-Term Care.
Additional information is available on the Ontario Ministry of Health and Long-Term Care Website at: http://www.health.gov.on.ca/english/providers/program/drugs/pdf/frequently_requested_drugs.pdf (See 'Imatinib' P. 57)
We are very happy to present the first official Newsletter of Life Raft Group, Canada!
LRG Canada's 'GIST The News' Newsletter July 2011
Sarcoma Patients EuroNet (SPAEN) Breaking News from ASCO June 2011
Getting the "GIST" of Gastrointestinal Stromal Tumours: LRG Canada's first webcast a success!
The Life Raft Group has been pioneering the development of GIST online resources since its inception. Life Raft Group Canada relies heavily on the internet to overcome the distance barrier in a country that stretches "from sea to sea to sea" (Atlantic to Pacific to Arctic).
Life Raft Group Canada's first online interactive webcast in March 2010 was very successful. Entitled Getting the "GIST" of Gastrointestinal Stromal Tumours, the event reached patients and caregivers across Canada with information about GIST and about Life Raft Group Canada and its upcoming initiatives.
We were very fortunate to have one of Canada's leading experts in GIST as our key presenter. Dr. Shailendra Verma, Medical Oncologist at the Ottawa Hospital Cancer Centre, shared his expertise on GIST and its treatment, including the approval in Canada of Gleevec for adjuvant (post-surgical) treatment of GIST.
After the webcast, Dr. Verma addressed several questions from the live audience. In fact, we ran out of time before he could answer all of the questions that came in. The GIST Sarcoma Life Raft Group Canada is thankful to Dr. Verma for sharing his time and expertise. We look forward to holding more webcasts in the future.
Report Card on Cancer in Canada
The 2010 Report Card on Cancer (prepared by the Cancer Advocacy Coalition of Canada) highlighted several issues, including the need for legislation bans on smoking in vehicles carrying children to be extended to all provinces; the frustrating delays in providing patient access to Electronic Health Records; and the problem of providing funding for cancer drugs. Rare cancers were featured in the Report, and Life Raft Group contributed one page about GIST. You can access the full 2010 Report Card at http://www.canceradvocacy.ca.
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The Toronto Globe and Mail's report on the subject:
Cancer treatment becomes perfect fiscal storm for Canadians Lisa Priest
From Thursday's Globe and Mail Last updated on Wednesday, Mar. 24, 2010 9:09PM EDT
Canadians are remortgaging their homes or relying on church fundraisers to pay for cancer medicines - a situation destined to grow worse as the population ages and drug coverage erodes, says a leading advocacy group.
Eighty per cent of working Canadians lose private health coverage at retirement. With most cancer patients diagnosed after age 60, benefit plans under pressure and high-priced cancer drugs coming on line, the problem has the makings of a perfect fiscal storm.
Typically, intravenous cancer medicines provided in hospital are paid for by medicare, while oral drugs may not be. The biggest problem arises with newer drugs - sometimes they are covered in one province but not another, and often funding comes years after approval by Health Canada.
That's where private health insurance, often provided through work, comes in. It usually pays for drugs approved by Health Canada two to three years before they are funded by the province, Mr. Bonnett said.
And while civil servants have been the envy of many, with their gold-plated private health plans following retirement, even they are being targeted for cuts. In an effort to save money, Treasury Board President Stockwell Day has opened the door to a two-tier pension system in which new employees may get reduced benefits.
The problem of obtaining cancer drugs has become so labour intensive, Canadian oncologists are spending 20 per cent to 25 per cent of their time trying to get medicines for their patients, said James Gowing, a hematologist-oncologist based in Cambridge, Ont., and co-chair of the Cancer Advocacy Coalition of Canada.
When that doesn't work, some patients are remortgaging their homes or turning to their community or churches to raise funds for treatment, which can run in the tens of thousands of dollars.
The advocacy group called for a national catastrophic drug plan, noting that even those with private coverage may face thousands of dollars in co-payments for cancer drugs. Such a plan would protect patients' out-of-pocket drug costs, co-ordinate planning between public and private drug plans to eliminate gaps in coverage and have a national claim-pooling mechanism to absorb high-cost drug claims.
"There are too many people who are forced to pay out of pocket," Mr. Bonnett said.
Multiple myeloma cancer patient Carolyn Henry, 65, certainly knows the high cost of drugs. When she looks at her prescription for Revlimid, she can't believe the cost - about $9,800 a month - and how fortunate she is to have it covered in Ontario. Before that, she had it covered under a clinical trial. Today, patients are lobbying to get the drug funded in New Brunswick and Manitoba.
"My goal was to see my daughter graduate from university," said Ms. Henry, diagnosed a decade ago with multiple myeloma, a cancer of the blood's plasma cells found in bone marrow. "Now that that's happened, I have to make new goals."
LifeFest 2010: Celebrating a Decade of Life
The Life Raft Group USA held “Life Fest 2010" in June 2010 at the Hyatt Regency in Jersey City, NJ.
Press Releases
Regarding Canada's Approval for Gleevec for Adjuvant Use