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My 20 year old daughter is in remission for AML. AML is very are at such a young age. Our oncology team is recommending sprycel (dasatinib) for maintenance. This drug is NOT covered by U.S. insurance companies. I am here at this forum because sprycel is used often in CML treatment. The cost of cost of Sprycel in states is more than double than in Canada. I have no idea of which Canadian pharmacies or how to go about researching credentials vs marketing scams. your help would be greatly appreciated.

 

Peter Gottstein

Deerfield Illinois

Peter, 

I am in the US and my Dasatinib (Sprycel) is covered all but $200 per month.  Then I qualify  for Dasatinib Patient Assistance to cover the $200.  I pay zero. 

Who has told you US insurance companies don’t cover it?  I have BC/BS Anthem.  Sprycel requires a “specialty pharmacy” but it is certainly covered. 

I have CML, and you say she has AML.  Is it that they don’t want to cover it for AML?  I can’t imagine that is right.  

In any event, call this number: 

1-855-SPRYCEL to  enroll.   I don’t think they even inquired into my income.  

At the same time press your health insurance company.  It’s a tier 4 or 5 medication, maybe your coverage excludes that category?? 

It’s completely unacceptable to not get her covered, I will do everything in my power to advocate for her, and I believe I can help you. Advocating for health coverage was one of my previous professions. 

If all else fails there is another resource to help you find and acquire what you need world wide   https://www.themaxfoundation.org/ 

Sarah 

 

Sara unfortunately sprycel is not covered by American insurance companies for AML. My family has currently gone though internal and external peer review by the insurance companies and have been denied. The reason being is that AML is fairly rare at such a young age of 20. Average age is 64. So insurance companies don’t see it as medical necessity drug because so few studies on young AML patients. We currently are waiting to hear directly from manufacture on a compassionate basis. However because of income I feel we will be denied. There are couple advocacy groups out there that we will try next if we our turned down. Last result is to buy it in Canada. That’s why we’re looking for reputable pharmacy recommendations . The cost in United States is double. The research on sprycel for maintenance drug for AML is still grey but we feel it’s worth exploring at least 3-6 month basis. 

 

Best

Peter

Wow, this is a travesty. We have got to demand universal health care in America. That’s another topic, but a passionate one we should all fight like hell for.  

The maxfoundation should be highly informed on pharmacy choices across the globe. I would trust their recommendation on a Canadian pharmacy or a pharmacy anywhere.

I also suggest you join the Facebook group “CML International Network - Journey to a Cure” as they have lots of knowledge on resources for TKI and assistance. 

Best of luck... !! 

keep us in the loop! 

Wow, this is a travesty. We have got to demand universal health care in America. That’s another topic, but a passionate one we should all fight like hell for.  

The maxfoundation should be highly informed on pharmacy choices across the globe. I would trust their recommendation on a Canadian pharmacy or a pharmacy anywhere.

I also suggest you join the Facebook group “CML International Network - Journey to a Cure” as they have lots of knowledge on resources for TKI and assistance. 

Best of luck... !! 

keep us in the loop! 

Sara, thank you so much for your response

Peter, I'm from the LLS forum ... what dosage of Sprycel have they prescribed?  20mg is the lowest Sprycel dosage manufactured.  20mg is referred to as the maintenance dose.  When CML has been undetectable, or at a very low level, rangebound, or plateaued for a period of time, at least a year, or so, it typically only requires a minimal TKI dose to control it.  I would think that applies to AML as well.  Most Sprycel longtimers take 20mg.  I've seen a few maintain successfully on 10mg, Sprycel pills are splittable; waiting for a 5mg.  Your daughter is likely to be on Sprycel for a long time.  It would behoove her to find the lowest dose possible.  When it comes to finding the necessary maintenance dose there is actually nothing wrong with becoming detectable again, at least with CML. while in the process of dosage reduction, as you can always increase the dose, back to the prior level.  20mg is more TKI than is needed for maintenance.  In addition, although younger CML patients tolerate TKIs much better than the older CML patients, TKIs are toxic drugs and the less we take over the longterm, the better off we are likely to be.  

Sprycel Assist https://www.sprycel.com/sprycel-assist
they should be happy to know that it is being used for AML

Buzzm1, 

While you await a response from Peter, do you mind if I ask you a question? 

I am on low dose, 20 mg Sprycel. My tablets are very small. I had wondered about slicing those (I sliced 50 mg tablets successfully for a while).  But these are much smaller.  I may try it just to see if the halves hold together.  But I wonder if you have thoughts on an “every other day” dosage with 20 mg Sprycel vs slicing them in half.  Just curious.  I’m not ready yet to do this, just exploring. 

Sarah, Buzz, excuse me for butting in here.  You might be interested in reading this, from the Stockholm Congress (2018) of the European Hematology Association:  Maintenance Therapy with Dasatinib Administration Every Other Day in Patients with Chronic Myeloid Leukemia, by Loiseau, Spentchian, Charbonnier et al EHA Library.LoiseauC. June16, 2018;215435;PS1121. (Sorry, I don't know how to "do" links.)

Sarah63, I don't know your CML history, I'm assuming your CML will have been stable for a prolonged period of time, but if and when the time comes you might first skip every fourth day, averaging 15mg per day, for a full testing cycle, before proceeding to skipping every other day.  

kat73, I found this:

Abstract: PS1121
MAINTENANCE THERAPY WITH DASATINIB ADMINISTRATED EVERY OTHER DAY IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA Clemence Loiseau
Aims
We first conducted a retrospective analysis on real-life CML pts allocated to maintenance therapy and then proposed a prospective maintenance study as part of the OPTIM dasatinib trial (EudraCT 2008-006854-17). The primary objective was to assess survival in maintenance without loss of MMR (BCR- ABLIS>0.1%).
Conclusion
A maintenance therapy with dasatinib once every 48 hours after achievement of a deep molecular response is feasible. Pts with duration of TKIs≥3y and duration of MR4≥1y experienced very high rates of survival in maintenance without loss of MMR (>95%) and without dasatinib related toxicities. Our results suggest that maintenance with dasatinib is an attractive option for pts in sustained deep molecular response.
 

I'm certain there is more to it .. I'll teach you how to post links

Yes, there is more, particularly that in the prospective arm, 31 out of 36 patients retained MR4 on the maintenance regimen.  But, again, these people were taking more than 20 mg Sprycel.  I wish the researchers would start including people on 20 mg!!

Everybody. Sum how with all due respect. My daughter is an AML patient who medical team believes putting her on sprycel for maintenance drug. It is NOT covered by by US insurance companies. This looking for reputable Canadian pharmacie as cost is half. Somehow it has gone into treatment protocols. Which I am not looking for. 

 

Thanks

 

peter 

Sorry dont have direct answer for you question but i think your chance to get an answer here is more likely.

https://communityview.lls.org/groups/chronic-myeloid-leukemia

this is the us forum for cml.

 

Also maybe just maybe, if someone switched spycel to another drug, or they are taking lower dose than their prescription, someone may help you for a short time period. 

 

Best wishes.

 

 

 

Check groups on Facebook. There are many people with the same problem as you. You can find answers.

I know American insurance companies do not cover Sprycel for AML. They don't consider it as a medical necessity drug. I recommend you contact the manufacturer directly. However, take into account that Sprycel causes severe side effects. It's known about bleeding, fluid retention, skin reactions, etc. It would be suitable for your daughter to take ношпа pills simultaneously. It's an excellent spasmolytic and vasorelaxant. Besides, it can prevent and treat pain quickly. Her body will thank you later!

Hi,

I am not sure about insurance companies,but at least in India ,generic version of sprycel is now available,I don't know if that is an option in Canada.
Good wishes to your daughter.

https://www.innomar-strategies.com/our-integrated-model/pharmacy

I recommend giving these guys a call .

Go to the contact us page for the addresses and phone numbers.

For Canadians , the government covers the 1st line TKI but only after they max out your personal insurance. But I have zero idea about the process for an American using a Canadian pharmacy.