Hello Ulla,
First of all, I'm glad you found the Canadian section of the site. While patients and family members share many issues across borders, access to medication and funding for treatment can be very confusing because the options differ depending on the country you live in. In Canada there are also funding differences between provinces. I can certainly understand your confusion and hope to clarify things from an Ontario perspective where I volunteer as the Ontario chapter coordinator for AAMAC. We're fortunate to have a strong group of medical advisors from across Canada who help us navigate the confusion.
I understand that getting government coverage for Aranesp or Eprex in Ontario is quite straight forward.
Neither Vidaza nor Dacogen are approved by Health Canada although both treatments are commonly used for higher risk MDS patients in the U.S. (Neither manufacturer has as yet submitted their medication to Health Canada.) However both medications can be obtained through the special access program (SAP) in Canada. Unfortunately the cost of the drugs on the SAP must be covered by the patient (estimated at $20,000 to $30,000 for a four-month trial). More information about the SAP can be found in our newsletters which are posted at
www.aamac.ca. Currently we are not aware of any clinical trials of Vidaza or Dacogen in Canada.
Revlimid is approved by Health Canada for patients with 5q-. However the provinces have not yet decided if they will fund it on their public formularies.
Some non 5q- MDS patients are also interested in accessing Revlimid in Canada as I have been told it has about a 25% response rate in MDS patients who are not 5q-. I understand that some patients have had their private drug insurance pay for the medication in this situation. This is called off label use.
AAMAC has and continues to advocate for access to new bone marrow failure treatments. When it was founded 20 years ago, the association advocated with others for an unrelated bone marrow donor registry…something Canada now has. We have advocated with manufacturers about submitting medication for approval by Health Canada.
In Ontario, we have been advocating for funding for exjade for iron chelation and more recently began working with multiple myeloma patients to advocate for provincial funding of Revlimid now that it has been approved by Health Canada. It is currently the only medication approved in Canada specifically for MDS – specifically 5q-. Health Canada is reviewing Revlimid for multiple myeloma and those patients are concerned that if it doesn't get funded for MDS patients it doesn't bode well for them if Health Canada approves it
for them.
I hope you can join us. I would encourage any marrowforum members from Ontario do so as well, even if they do not have MDS 5q-. After all the more voices, the more likely we'll be heard. Details are in our Summer 2008 newsletter at
www.aamac.ca including contacts for more information. I'll also post more details on marrowforums shortly.
(Some B.C. patients are also interested in this issue although I'm more familiar with the situation in Ontario.)
Where are you located in Ontario? Ontario is fortunate to have three Centres of Excellence for the treatment of MDS – the Hospital for Sick Children (pediatric), Sunnybrook and Princess Margaret, all in Toronto. There are also knowledgable doctors who are treat MDS patients in other locations across the province.
Things are always changing so it's best to have a hematologist who is active in the area of MDS so that you hear about any changes in the future that might benefit you.
It's also great to share information and experiences on forums like this and attend educational events. AAMAC is hosting its annual patient education day in Toronto, Ontario on October 4, 2008 and I would strongly encourage Canadian patients and family members to attend. The day will feature updates on treatment and allow everyone to ask questions of doctors who specialize in bone marrow failure diseases. I hope you can make it.
Unfortunately I'm not aware of any MPD specialists in Ontario. At one point I was contacted by someone who was hoping to start a support group for MPD patients but I did not hear if one actually started.
I hope this helps. Best, Chris.