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Ulla Thu Jul 17, 2008 12:22 PM

Medications for MDS in Canada
I have heard different things about what is available in treatment of MDS. There are two issues: One, what is available and two, what is being paid for. I was told that Vidaza and Dacogen are not approved here. Could they still be used in clinical trials, or would I have to go to the U.S. for that? My doctor told me that Revlimid was only approved for 5q syndrome, but I know there have been trials for RARS without the 5q, with somewhat lower responses, but still effective. The erythropoetin drugs such as Aranesp can be prescribed here, if you can pay for them. Can they be covered if your doctor applies?
Another question: Where can I get the names of hematologists who are specializing in MDS and MPD in Ontario?
DX MPD June 2007, RARS June 2008, possibly MDS/MPD.

chris Mon Jul 21, 2008 10:46 PM

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 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 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.

Ulla Wed Jul 23, 2008 05:16 PM

Thanks for the info
I am grateful for your info, even though it is in a way discouraging that so many drugs are not available or are outrageously expensive! I have not had an epo test and perhaps there is something there for me to ask my physician. How do they apply for the aranesp or similar drug? I was told by somebody that private insurers might cover it.
Thanks again.

Joanne Thu Jul 24, 2008 01:22 PM

Hi Ulla
Where about's in Ontario are you from? My mother was diagnosed with RARS in May. Her doctor is Dr. Irwin Walker from Mcmaster. I was just wondering if you had the same hematologist or not.
I totally understand what you are saying about not being covered/drugs not being available here. It is very frustrating. Especially when you read on this forum about all the wonders that these drugs are doing for people.

chris Thu Jul 24, 2008 09:32 PM

Hello Ulla & Joanne,

I agree that it’s extremely frustrating when medications are not accessible because they're not available or too costly and hope you'll both join our advocacy efforts here in Ontario.

In terms of how to access coverage for eprex and aranesp in Ontario, I
understand that private insurers will generally cover eprex or aranesp for
MDS patients without hesitation.

If you do not have private insurance, I’m told it is pretty straightforward
to get Individual Clinical Review (ICR) coverage for these medications
in Ontario and that this pretty much provides full coverage for patients
over 65 years of age.

Generally, patients in Ontario under 65 need to apply for the Trillium Drug Program (TDP). This Ontario government program: ”is intended for Ontario residents who have a valid Ontario Health Card and who have high prescription drug costs in relation to their net household income.” Patient contributions for part of the cost vary depending on their income and household size.

Details about Trillium are posted at:

Information about ICR is at

You should talk to your hematologist (or your mom's hematologist) as this is something they should know about.

Best, Chris.

LynnI Thu Jul 24, 2008 11:00 PM

The info that you have provided is very much appreciated, being new to MDS it can be so frustrating and overwhelming to know where to start when denied coverage of meds here in Ontario. As I am sure you know.
I was denied Rivlimid and now my Dr. has decided to try other treatments, if those fail he says we can push for assistance on the Rivlimid. I hope his choice of treatment is the correct one.........

chris Mon Jul 28, 2008 07:38 AM

MPD in Canada
Hello Ulla,
I heard about something yesterday at the AAMDSIF conference that may interest you. It's an MPD Research Consortium and info is at Although mostly linked to U.S. and European centres, McGill is a participating Canadian centre under Dr. Jaroslav Prchal. Although this is not in Ontario, perhaps they could connect you with someone locally. Also, there are patient links on the website which may also be of interest. I don't know much about MPD but hope this info is helpful.
Best, Chris.

Ulla Sun Aug 3, 2008 09:27 PM

I read with great interest the lengthy article about the Eu deciding against allowing Revlimid. It is very disappointing, but apparently there was this unexplained transformation to AML that was statistically significant. Any comments? It has been used for a few years in the U.S. and has anyone heard any similar stats?

Birgitta-A Tue Aug 5, 2008 04:11 AM

Hi Ulla,
I don´t know anything about Revlimid that they didn´t write in the EMEA paper but as far as I understand they found that AML transformation had been more commonly observed in patients who had not evidenced a cytogenic response to Revlimid treatment and who had frequently had limited exposure to this drug (page 48).

I don´t know if this means that patients that have a good response do not have an increased risk of AML. They have shown in another study that patiens with anemia (not low WBC:s and platelets) have the best response to Revlimid.
Kind regards

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