News

AAMAC Education Day 2010

AAMAC's Education Day 2010 will be taking place on Saturday, October 16th, 2010 at the Ottawa Marriott Hotel. Our theme this year is Living With Bone Marrow Failure. For more details, please see our Upcoming Events page.

We have posted a step by step guide to get you started.

General information about the walk including a map is at www.torontowaterfrontmarathon.com.

For more about the Marrow Movers, please contact me at chris_meyer@sympatico.ca or 416-994-6712 or Susan McVeigh at susanbmcveigh@hotmail.com or 416-251-9552.

We look forward to seeing fellow Marrow Movers online and on walk day!

Vidaza Information Session

On July 12 at 7:00 pm EST, the Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) will be hosting a national phone teleconference where Dr. Brian Leber will present the latest information on the efficacy and application of Vidaza. All interested patients, care givers and health care providers are invited to participate in the call.

For more details, please click here.

Vidaza on Alberta Formulary

As of May 1, 2010 Alberta Health Services has listed Vidaza (generic name azacitidine) under the Outpatient Cancer Drug Benefit Program. The Alberta Health Services provides cancer drugs specified in the Outpatient Cancer Drug Benefit Program, at no charge, to eligible residents for the treatment of cancer.

The listing for azacitidine is for the treatment of patients with MDS with IPSS high-intermediate and high-risk scores or AML with up to 30% blasts and myelodysplastic features. Prescribing of the medication is limited to written authorization by certain physicians only.

You can get all the details at: this link

Alberta is the first province to put Vidaza on the formulary for funding. This does not mean it isn't available in other parts of the country, just that there is some special access or authorization process that must be gone through to get the medication there.

Exjade access expanded in Alberta

Alberta Blue Cross has updated their coverage for the new iron chelator Exjade. Effective April 1, 2010 the criteria outlining when Exjade would be funded has been expanded. Full details can be found at: https://www.ab.bluecross.ca/dbl/pdfs/ahwdbl_april_list.pdf

From the Alberta Blue Cross website, the benefit is described as:

"For patients who require iron chelation therapy but in whom deferoxamine is contraindicated.

Information is required regarding the contraindication to use of deferoxamine. Contraindications may include one or more of the following: known or suspected sensitivity to deferoxamine, recurrent injection or infusion-site reactions associated with deferoxamine administration (e.g., cellulitis), inability to obtain or maintain vascular access, concomitant bleeding disorders, or risk of bleeding due to anticoagulation."

A physician still has to apply using the Special Authorization process.

Education Day Coverage on Global

Click here to play.

Vidaza Approved by Health Canada

In August 2008, Vidaza became the first and only drug approved by the U.S. Food and Drug Administration (FDA) to demonstrate a significant extension of overall survival compared to conventional care regimens, for patients with Intermediate-2 and high-risk MDS and AML. On October 23, 2009 Vidaza (azacitidine) was approved by Health Canada for two specific groups of patients. The special announcement from Celgene read: "VIDAZA is indicated for the treatment of adult patients who are not eligible for hematopoietic stem cell transplantation with:

• Intermediate-2 and High-risk Myelodysplastic Syndrome (MDS) according to the International Prognostic Scoring System (IPSS).
• Acute Myeloid Leukemia (AML) with 20-30 % blasts and multi-lineage dysplasia, according to World Health Organization (WHO) classification.

Celgene is working quickly towards the commercial availability of VIDAZA in Canada. Until further notice, VIDAZA is only available through the Special Access Program (SAP) from Health Canada. For more information about VIDAZA and how to access VIDAZA, please contact Celgene Medical Information at 1-888-712-2353 ext 4850."

Getting Health Canada's approval is the very first step in making a drug marketable in Canada. Of course, having it on the market does not mean that it is truly accessible to all patients. AAMAC will advocate on behalf of patients to ensure that it is covered by provincial funding programs.

H1N1 Guide Available

The Public Health Agency of Canada has released the Your H1N1 Preparedness Guide which includes information about how to develop a pandemic plan (with a check list), symptoms and details of those at risk of developing complications, how to prevent the virus (protect and prevent), how to take care of someone who is sick with the virus, as well as additional resources for more information. See their website.

AAMAC responds to article in The Windsor Star

"Treatment access in Canada"

Windsor Star

August 27, 2009

Re: Teen needs marrow transplant to hold off leukemia, Aug. 19.

The Aplastic Anemia and Myelodysplasia Association of Canada provides support and information to those dealing with serious bone marrow failure diseases. We also advocate for access to treatment and fund research to discover a cure.

I understand the devastation and fear that accompanies a diagnosis of myelodysplasia and my heart goes out to Wes Laporte and his family. I have been in contact with the family and offered our support and guidance.

I am very concerned, however, that this family was not made aware that Vidaza is indeed available through Health Canada's Special Access Programme.

It is unfortunate that they felt their only option was to fundraise to send their son to the U.S. for treatment.

This is a terrible burden on a family that is dealing with such a stressful situation. Furthermore, I am shocked that your newspaper did not research the facts but instead incorrectly stated that Vidaza is not available in Canada.

I would like to make all MDS, patients and their caregivers aware that your assertion about the availability of Vidaza in Canada is incorrect. If a physician believes that Vidaza is the most appropriate treatment option, they can obtain the medication for the patient in Canada.

STAN CHMELYK, president, Aplastic Anemia and Myelodysplasia Association of Canada, Brampton
(from http://www.windsorstar.com/health/Treatment+access+Canada/1933460/story.html)

The original article, "Teen needs marrow transplant to hold off leukemia" was published on August 19, 2009 in the Windsor Star.

Join the 'Marrow Movers' as we walk 5K for AAMAC

Sunday September 27, 2009 is the 20th Scotiabank Toronto Waterfront Marathon - Fast, Flat and Festive! AAMAC is one of the official charities that will use the five kilometre walk/run as a fundraiser. It is the first time we will be participating, as the 'Marrow Movers'.

Visit www.torontowaterfrontmarathon.com for details and see our page at www.torontowaterfrontmarathon.com/en/charity/aamac.htm.

Beginning at 10:20 a.m. inside the Princes' Gate of the Canadian National Exhibition, the short and scenic distance finishes at Toronto City Hall's Nathan Phillips Square in time to meet friends for brunch. A brisk walk several times a week is usually enough to get you prepared for a 5K route. This is an ideal event for the whole family to support - there are no age restrictions!

You can register online for the walk, and even the fundraising. Donations can be made online or you can download a pledge form here or on the race site.

Let's make this a cross-country event! Online pledging means you can support this fundraising effort by rounding up support for any of the walkers/runners registered to support AAMAC. You don't have to be in Toronto to participate!

Join the 'Marrow Movers' today!

• Each Marrow Mover receives a red and white "Lifeblood" bracelet.
• Raise $250 or more and we'll cover your entry fee for the 5K walk.
• Walk with your family - the first 12 children age 13 or under who join the walk will each receive one Webkinz® pet courtesy of GANZ. (Just email or phone us with your child's name.)
• The Marrow Mover who raises the most funds for AAMAC this year will receive a $50 movie gift certificate.
• Let us know if you are walking in honour or memory of someone and we'll include their name in our national newsletter.

Register at ww.torontowaterfrontmarathon.com. Please contact volunteer Susan McVeigh at 416-251-9552 or susanbmcveigh@hotmail.com if you have any questions.

Instructions - It's Quick and Easy to Register (Really!!)

• Register as a race/walk participant. Visit the event website and select 'Registration and Confirmation'. You can register through either eventsonline or the Running Room links.
• After you have registered to run or walk, you must then register separately as part of the Scotiabank Group Charity Challenge. Follow the link, 'Sign up online to raise funds...' , or if you registered through eventsonline, you can use their site to set up your fundraising page.
• Our charity is listed under the heading 'Other Official Charities at the 2009 STWM.' Select our charity, click on the link 'start fundraising or pledging today,' and it will guide you through becoming a member of The Marrow Movers. There will be a button on the left side of the page that says 'Sign up', and that's what you do! Chris Meyer is our Team Captain.

Soliris(™) (Eculizumab), The First and Only Therapy For The Treatment of Patients with PNH, Is Now Available in Canada

Toronto, ON, July 29, 2009 - Alexion Pharma Canada, a newly incorporated division of Alexion Pharmaceuticals, Inc. (NASDAQ: ALXN), today announced the availability in Canada of Soliris™ (eculizumab) for the treatment of patients with paroxysmal nocturnal haemoglobinuria (PNH), an ultra-rare, progressive and life-threatening blood disease characterized by chronic haemolysis, or red blood cell destruction.

Click here (or here for French version) for the complete press release.

Aplastic Anemia in the News

In 2009 Citytv featured the story of James Ilari, an aplastic anemia patient in Ontario. To view the segment click here.

MDS in the News

Read one MDS patient's story in the January 2009 North York Mirror article "Woman with rare disease living life to fullest again."

Read Dr. Richard Wells and Dr. Isaac Odame's article "Breakthrough blood therapy sees first advance in 40 years" on page 26 in the November 2008 issue of Hospital News.

PNH Drug Approved

January 29, 2009 - Soliris® (eculizumab) is approved by Health Canada for the treatment of paroxysmal nocturnal hemoglobinuria (PNH). This is the first and only drug available to treat PNH.

You can read the press release at the manufacturer's website: http://ir.alexionpharm.com/releasedetail.cfm?ReleaseID=362191

AAMAC Education Day Webcasts

Link to select webcasts from AAMAC's Education Day on October 4, 2008. The presentations by Drs. Wells, Messner, Buckstein and Gupta are available. Click on this link and choose a name on the left hand side of the screen to select an individual presentation.

Listeriosis Message

You may be concerned about listeriosis following the recent recalls of deli meat. After all, immunocompromised patients are at increased risk for listeriosis, and many patients with a bone marrow failure disease are immunocompromised.

We asked the Chair of our Medical and Scientific Advisory Committee, Dr. Richard Wells about this and he advises the following:

1. Any patient with myelodysplastic syndrome (MDS), aplastic anemia or PNH who experiences flu-like symptoms and who has recently (within a week) consumed deli meat should go to an emergency room for blood cultures.
2. MDS/AA/PNH patients should not consume deli meat.

If you have any questions please consult a doctor.

AAMAC Announces $45,000 MDS Grant

The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is pleased to announce that it is funding a proposal to create Canadian Consensus Guidelines on the Treatment of myleodysplastic syndrome (MDS). In addition, this new two-year, $45,000 grant will be named the Gord Sanford Memorial Grant in honour and in recognition of the extensive contributions made by our late President to Canadian patients.

The guidelines will focus on the diagnosis and management of MDS. They will be developed by Dr. Richard Wells, Co- Director, Myelodyplastic Syndromes Program at Sunnybrook Health Sciences Centre and the Chair of AAMAC's Medical and Scientific Advisory Committee, and an expert panel of 10 to 15 hematologists from across Canada.

"In the past few years there have been numerous major advances in MDS - including new pathological classification and prognostic systems, new approaches to supportive care, and new disease-modifying therapies," wrote Dr. Wells in his proposal. "It has been very difficult for practicing hematologists, oncologists and internists to keep pace with these developments and as a result practice patterns have become haphazard. To ensure delivery of proper, up- to-date care to Canadian MDS patients, it is essential to produce a strong, evidence-based practice guidelines."

Dr. Wells was part of a recent collaboration by Canadian hematologists to create Canadian Consensus Guidelines on the management of iron to create Canadian Consensus Guidelines for iron overload in MDS. Those guidelines were recently published after peer review in the journal Leukemia Research. It was during the development of the iron chelation guidelines that need for broader MDS guidelines was highlighted.

A consensus conference meeting will be held in May 2009 and following approval of recommendations by the panel, a manuscript will be drafted for submission to a peer- reviewed journal such as the Canadian Medical Association Journal.

AAMAC is pleased to support this effort which is designed to improve the lives of Canadians with MDS as reflected by the Board's unanimous support. The Board also agreed it was a most fitting tribute to Gord Sandford who worked tirelessly to improve the lives of other patients while fighting the disease himself.

Canadian Blood Services Board Meeting

When:   Thursday, June 26, 2008; 8:30 am - 4:30 pm
Where: Ottawa, Ontario

Click here for details: in English or French.

First National Blood Donor Week & World Blood Donor Day

The week of June 9, 2008 is the first National Blood Donor Week recognized by the Government of Canada. The week, culminating June 14 on World Blood Donor Day, is an opportunity to thank volunteer donors for their gift. This year's theme, "Many Happy Returns", was chosen to highlight the importance of committed, lifelong donors, and the many opportunities to save lives through blood donation in the course of a year.

Thank a blood donor today!

Last spring, the federal government passed a bill making National Blood Donor week "official." The bill was initially brought forward in the Senate in 2005 by Liberal Senator Terry Mercer and co-sponsor Conservative Senator Ethel Cochrane (Newfoundland and Labrador). Navdeep Bains, MP (Mississauga-Brampton South) sponsored the Senate Bill in the House of Commons where all parties supported it.

Canadian family and friends of patients can call 1 888 2 DONATE (1-888-236-6283) today to book an appointment to give blood.

2008 MDS/MPD Patient Conference

When:   Saturday, June 7, 2008; 8:30 am - 5:00 pm
Where: Fred Hutchinson Cancer Research Center
Pelton Auditorium, Weintraub Building
1100 Fairview Avenue North, Seattle, WA 98109
To register or for more information please call 1-800-747-2820

Click on the links for conference brochure and tentative agenda.

May 2008
Third Canadian MDS Center of Excellence Named

Congratulations to Princess Margaret Hospital (PMH) in Toronto which was recently designated as a Center of Excellence by the U.S.-based Myelodysplastic Syndromes Foundation. PMH is a comprehensive cancer treatment and research centre in Toronto, Ontario.

The others to have received this designation are the Hospital for Sick Children and the Odette Cancer Centre at Sunnybrook Health Sciences Centre, both also in Toronto.

To be recognized as a Center of Excellence, an institution must have an established university (or equivalent) program; recognized morphologic expertise in MDS; available cytogenetics (chromosome evaluation) and/or molecular genetics; documentation of peer-reviewed publications in the field and the ability; intention to register patients in the MDS International Registry Database; and ongoing research including Institutional Review Board-approved clinical trials.

The Princess Margaret Hospital is currently involved in a number of clinical trials for MDS and aplastic anemia patients including the following.

• a pilot study to evaluate immunosuppressive therapy using a reduced dose of thymoglobulin (rabbit anti-thymocyte globulin) and cyclosporine in the treatment of patients over 60 years of age with low-risk MDS or AA;
• a phase II trial of sunitinib, a multi-targeted receptor tyrosine kinase (receptor enzyme) inhibitor, in patients with MDS or chronic myelomonocytic leuekmia (CMML);
• a pivotal randomized study of an anti-cancer drug called lonafarnib versus placebo in the treatment of patients with MDS or chronic myelomonocytic leukemia (CMML) who are platelet transfusion dependent with or without anemia;
• a multi-centre, open-label, phase II study of obatoclax mesylate in patients with previously untreated MDS with anemia and/or thrombocytopenia (a low platelet count);
• a study of health-related quality of life in patients requiring chronic red cell transfusions with the goal of developing a new disease-specific measure;
• a phase 1 study of MKC-1 in patients with refractory hematologic malignancies;
• a phase I/II study of sorafenib in combination with low dose cytarabine in elderly patients with acute myeloid leukemia or high risk MDS;
• and a pilot study to understand the impact of AA and its treatment on quality of life.

New Oral Medication Gives Hope to Patients with Blood Cancer

REVLIMID ® Receives Health Canada Approval for the Treatment of Deletion 5q Myelodysplastic Syndromes

OAKVILLE, ON, Jan. 24 /CNW/ - Celgene announced today that Health Canada has granted a Notice of Compliance with Conditions (NOC/c) to the oral cancer therapy REVLIMID ® (lenalidomide) to treat patients with transfusion-dependent anemia due to Low- or Intermediate-1-risk myelodysplastic syndromes (MDS) associated with a deletion 5q cytogenetic abnormality with or without additional cytogenetic abnormalities. In clinical trials, Revlimid has been shown to significantly reduce or eliminate the need for blood transfusions and raise hemoglobin to nearly normal levels in the majority of these patients.

"Revlimid is a great advance for the treatment of patients with this particular type of MDS," said Dr. Richard Wells, Co-Director of the Crashley Myelodysplastic Syndrome Research Program, Odette Cancer Centre and Scientist with the Sunnybrook Research Institute. "Our clinic has seen dramatic life-transforming results. Patients treated with Revlimid may stop needing blood transfusions which means they feel healthier and energized. Also, Revlimid allows patients to enjoy more independence and have fewer hospital visits."

Unlike other treatments for deletion 5q MDS, Revlimid treats the underlying cause of the disease rather than merely the symptoms. More ...