December 01, 2016
2017 Patient Education Day
Mark your calendar! Saturday, September 30th at the Sheraton Vancouver Airport Hotel. More details to follow.
October 19, 2016
Mixed Match Screening
Mixed Match will be screening at the Toronto Reel Asian Film Festival, Tuesday, Nov. 15th at 7pm at the Japanese Canadian Cultural Centre. There will also be a stem cell drive before and after the screening. Doors at 6:30pm.
Tickets are available at bit.ly/mixedmatchra
September 29, 2016
Patient Education Day
It's not too late to register for the Moncton meeting being held on October 15th
September 29, 2016
November 10th Tips for Your Caregiving Journey: Self Care for Caregivers.
See "Upcoming Events" for details
September 20, 2016
PNH Awareness Week
(Week of September 26th)
September 20, 2016
MDS Awareness Day
August 24, 2016
The Canadian Association of PNH Patients is holding a PNH patient and caregiver meeting in Montreal on September 24, 2016. See for details and registration: http://www.pnhca.org/news/invitation-montreal-patient-and-caregiver-meeting/
August 17, 2016
Ontario Teen Meets German Donor
March 01, 2016
Clinical Trial Alert!
Kallisto Canada-wide clincial trial.
See "Treatment & Support" for details.
December 02, 2015
Patient Support Meetings 2016
See "Upcoming Events" for details
September 29, 2015
Living with MDS - Managing the Disease, Treatment & Side Effects
View the Presentations from Michelle Forman RN, CON(C), Burnaby Hospital Cancer Center
September 01, 2014
Become a Member or Supporter of AAMAC
Due to the new non-profit legislation, we need you to formally become a member or supporter of the association.
Support the work of AAMAC by becoming a member or supporter:
in English: English Membership Form
en Français Formulair d'inscription.
Fax, mail or email scanned form to AAMAC office.
October 28, 2013
Pediatric Research Grant Announced - October 2013
The Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) and the C17 Research Network are pleased to announce a Request for Applications for research studies into aplastic anemia, myelodysplasia (MDS) and paroxysmal nocturnal hemoglobinuria (PNH).
The area of research can include all phases of clinical trials, disease or population-based registries or biological sample banks, quality of life, health outcomes and psychosocial research, basic and translational research with a direct application to research into the causes, treatment, cure and quality of life for young people with aplastic anemia, myelodysplasia or PNH.
Funding available for this competition is a one-time grant of $45,000.00 per year for 2 years.
Read the request for applications, and complete the letter of intent if interested in applying.
The deadline for the Letter of Intent application is November 29, 2013.
June 14, 2013
World Blood Donor Day
World Blood Donor Day, celebrated on 14 June every year, serves to raise awareness of the need for safe blood and blood products and to thank voluntary unpaid blood donors for their life-saving gifts of blood. With the slogan "Give the gift of life: donate blood", this yearâ€™s campaign, the 10th anniversary of World Blood Donor Day, will focus on the value of donated blood to the patient, not only in saving life, but also in helping people live longer and more productive lives. To learn more about World Blood Donor Day, please visit the WHO's site at http://www.who.int/campaigns/world-blood-donor-day/2013/en.
For those of you who have received the life-saving gift of blood, consider thanking your donor by leaving a note at Thank Your Donor, http://www.thankyourdonor.ca, a website created by Canadian Blood Services.
June 28, 2012
Advisory - Contaminated Kleenex-brand Hand Sanitizer Poses Serious Risk for People with Weakened Immune Systems
OTTAWA, June 28, 2012 /CNW/ -
Kimberly-Clark Professional Corporation is voluntarily recalling Kleenex-brand Luxury Foam Hand Sanitizer due to microbial contamination. Product testing undertaken by the company detected bacteria that may pose serious health risks to people with weakened (compromised) immune systems, especially those with cystic fibrosis. The affected Kleenex Luxury Foam Hand Sanitizer comes in 1 litre and 1.2 litre containers and is used in large-volume dispensers, such as those found in public areas and workspaces. The recall affects approximately 430 containers in total, which were distributed to retail stores and wholesalers across Canada.
Who is affected:
Canadians with compromised immune systems, especially those with cystic fibrosis, who have bought or used this product.
What purchasers should do:
Companies or individuals who have purchased the affected product for use in their facility should remove it from use. Contact the company, Kimberly-Clark Professional Corporation at 1-888-346-4652 for more information about the recall.
What immune-compromised consumers should do:
Do not use the affected Kleenex-brand Luxury Foam Hand Sanitizer or any sanitizer which you cannot identify from a dispenser. Speak to your healthcare practitioner about any questions or concerns regarding this product. Report any adverse reaction you suspect may be related to this product to Health Canada (see below).
What Health Canada is doing:
Health Canada is monitoring the recall and the company's investigation to identify and address the root cause of the contamination. No adverse reaction reports involving the use of this product have been reported to Health Canada. The company has also confirmed it has received no adverse reactions reports involving the affected product to date.
The bacteria identified in the tested samples are from the Burkholderia cepacia group. These bacteria pose little risk to healthy Canadians, as their bodies are able to successfully fight off infections. For someone whose immune system has been weakened by other serious illnesses, especially cystic fibrosis, these bacteria can cause serious infections, including pneumonia and blood infection. Please note only the products described below are affected by this recall. http://files.newswire.ca/1043/en.pdf
For more information:
Consumers and health professionals wanting more information about this advisory from Health Canada can contact the Public Enquiries Line at 613-957-2991, or toll free at 1-866-225-0709.
Media enquiries related to this Advisory should be directed to Health Canada Media Relations at 613-957-2983.
How to report side effects to health products to Health Canada:
Call toll-free at 1-866-234-2345
Visit MedEffect Canada's web page on Adverse Reaction Reporting for information on how to report online, by mail or by fax.
Stay connected with Health Canada and receive the latest advisories and product recalls using these social media tools: http://www.hc-sc.gc.ca/home-accueil/sm-ms/index-eng.php
Également disponible en français
PDF available at: http://stream1.newswire.ca/media/2012/06/28/20120628_C5036_DOC_EN_15829.pdf
For further information:
May 12, 2012
AAMAC partners with CIHR to offer research grants
May 14, 2012: Today's news release announces two research fellowships in the area of bone marrow failure disease which are being funded by AAMAC in partnership with the Canadian Health Institutes of Research.
More information on these projects can be found on the CIHR website.
August 01, 2011
Governments agree to fund Soliris (eculizumab) treatment for PNH
The Aplastic Anemia and Myelodysplasia Association of Canada commends the provincial/territorial governments of Canada for their decision to provide public access to Soliris (eculizumab). Soliris was approved by Health Canada for the treatment of paroxysmal nocturnal hemoglobinuria (PNH) in January 2009. It is the first and only treatment specifically for this bone marrow disease and has been a miracle drug for numerous patients. Until now, only patients with third party insurance coverage have been able to obtain this expensive and life-saving medication. This recent decision is extremely good news for the remaining PNH patients who might benefit from Soliris.
Read the Press Release at: http://www.digitaljournal.com/pr/371075
Read the Toronto Star article at: http://www.thestar.com/article/1029235--premiers-reach-deal-on-bulk-buying-of-expensive-drug
June 01, 2011
Interested in Stem Cell or Bone Marrow Transplantation? Webinar Series Continues
Patients from across Canada joined Dr. Karen Yee for a MDS Overview during the first in a series of educational webinars offered by AAMAC. For those who were unable to attend, Dr. Yee has kindly offered to allow us to post her slides online. The next webinar features an overview of the OneMatch Stem Cell and Marrow Network with the organization's Patient Transplant Liaison Specialist Mary Lynn Pride.
Join us for the presentation on Saturday, June 11 from 2:30 p.m. to 3:30 p.m. Mary Lynn will provide an overview for those interested in OneMatch and the process involved in finding an unrelated donor.
Join toll-free by phone by calling 1-800-615-2900 and enter 287078#. To view Mary Lynnâ€™s slides during the call, visit http://www.freeconference.com/SharePlusConnect.aspx?E=cc7f1164548fd575a2ae9118709c4f76&B=10232501&AC=1 from a computer five minutes before the call and follow the sign in instructions. Viewing the slides is optional.
A question and answer session will follow the presentation.
For details or to suggest future webinar topics, please contact Chris at email@example.com or (416) 994-6712.
Mary Lynn's presentation will also be heard live at the regular support group meeting at Canadian Blood Services' 67 College Street location. The regularly scheduled support group runs from 2 to 4 p.m. If you are interested in attending in person, please RSVP to Stan Chmelyk at firstname.lastname@example.org.
March 31, 2011
MDS Overview Conference Call - March 31
Slides from March 31, 2011's hour-long MDS Overview by Dr. Karen Yee at Princess Margaret Hospital in Toronto are now available online.
November 01, 2010
Education Days 2010 Videos
Videos of the presentations from AAMAC's Education Days 2010 are now available for viewing online.
May 10, 2010
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.
February 28, 2010
Spread the Word
To mark Rare Diseases Day on February 28, the Canadian Association of PNH Patients asks you to help spread the word about the issue of a lack of publicly-funded access to Soliris for PNH patients.
- Watch the new patient video from the Canadian Association of PNH Patients - By accessing the link below, you can view the four-minute patient video, which outlines the need for publicly-funded access to Soliris for PNH patients.
- Write to your Premier and Minister of Health - By going to www.pnhca.org, you will see a link to send an online letter to your Minister of Health or Premier. A standard letter can be found on the website, but please feel free to personalize this letter with your own words or stories about your experience with PNH, or the context surrounding your relationship to a person with PNH. Please note that you can only send the letter to one recipient at a time.
- Write to your MPP - By either using the standard letter found at www.pnhca.org or by writing your own letter, express to your MPP the importance of publicly funding access to Soliris for PNH patients.
Contact information for all MPPs can be found at this link, or if you don't know your riding or MPP, click here.
- Join and engage with its social media networks - In addition to the existing Facebook page for the Canadian Association of PNH Patients, we have also launched a Twitter and YouTube presence. Please comment, tweet and post your support for funding for Soliris. In your letters, and when reaching out to your friends and family, please share the following links:
- tweet your words of support
- include "@PNHCanada" in your tweeted message - for example: "I support @PNHCanada and the fight for access to life-saving treatment for PNH patients!"
- "Like" the page - click "Like" when you are logged into Facebook
- write on the wall, post photos, and other relevant media
- comment on the patient video and discuss with fellow supporters
- "Like" the video â€“ click the button with the thumbs up sign
- share the link with your friends
- Spread this message to your friends and family members - Urge your network of friends and family to become engaged in the fight to have Soliris publicly funded for PNH patients. Send them a personalized message asking them to spread the word to their own networks.
November 02, 2009
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.
October 24, 2009
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.
September 01, 2009
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.
August 27, 2009
AAMAC responds to article in The Windsor Star
"Treatment access in Canada"
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
The original article, "Teen needs marrow transplant to hold off leukemia" was published on August 19, 2009 in the Windsor Star.
July 29, 2009
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.
January 30, 2009
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.
January 29, 2009
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
September 01, 2008
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.
August 01, 2008
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:
- 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.
- MDS/AA/PNH patients should not consume deli meat.
If you have any questions please consult a doctor.
July 01, 2008
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.
June 09, 2008
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.
May 01, 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.
January 01, 2008
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 ...