Hemophilia reason for PR rejection. Is there a way?

[canuck78]

Its my son with sever hemophilia A. We asked for Permemnant residence visa but were rejected.

Have you calculated his approx yearly cost of treatment?

 

[Gitibhd]

Have you calculated his approx yearly cost of treatment?

The officer said it is 500000 CAD per year but Canadaian Blood Service said it is between 60000 to 90000 CAD per year.

 

[canuck78]

The officer said it is 500000 CAD per year but Canadaian Blood Service said it is between 60000 to 90000 CAD per year.

That is still significantly higher than the 5 year limit even if you use Canadian blood services numbers.

 

[canuck78]

The officer said it is 500000 CAD per year but Canadaian Blood Service said it is between 60000 to 90000 CAD per year.

Sorry got confused thought you were the new person without further information.

 

[Jamesaus]

Hi all.
We are a family of 4 from Iran. We have 2 kids aged 9 and 6. My son has sever hemophilia type A and has to inject FACTOR 8 three days a week.
3 yeas ago we applied for permenant resident visa to canada via investment program and we spent so much money and time waiting all these years to be accepted. We were all qualified and even we paid the landing fee to Canada's government but when we did the medical tests,a letter came to us telling that my 9 year old son's medication costs cause excessive demands on Canada's social service. The IRCC officer had estimated the costs to be 537000 CAD/year . Our lawyer in Canada responded to their procedural fairness letter indicating by proved documents that the costs would be between 40000 to 95000 CAD which was well bellow the 537000 CAD that IRCC had estimated. Four months later,we recieved a letter from the officer telling us that we were rejected.
We are all hopeless now.
Our lawyer is going to file a notice to the court for leave and judicial review.
According to humanitarian and compassionate considerations, do you think we have any chance?

Have you found the price of Hemlibra for your son? This is a new preventative medication for Hemophilia A. We are in Australia and the price may be different there, but it may be an alternative to look into.

This is a new medication that replaces the regular factor 8 treatment for children and adults.

 

[scylla]

Have you found the price of Hemlibra for your son? This is a new preventative medication for Hemophilia A. We are in Australia and the price may be different there, but it may be an alternative to look into.

This is a new medication that replaces the regular factor 8 treatment for children and adults.

Hemlibra is unfortunately not accessible / available in Canada at this time. Sadly the Quebec government has recently made a recommendation not to fund it for reasons that are a bit beyond me (the bleeding community and medical professionals are arguing against this recommendation). The verdict on the rest of Canada is still TBD in the last newsletter I read. I follow this stuff since I have a factor VIII deficiency myself, although not the kind that would make me a candidate for Hemlibra.

 

[canuck78]

Have you found the price of Hemlibra for your son? This is a new preventative medication for Hemophilia A. We are in Australia and the price may be different there, but it may be an alternative to look into.

This is a new medication that replaces the regular factor 8 treatment for children and adults.

Don’t think that would change refusal. If available it will be at significant cost.

 

[immig_IT_guy]

please let us know if you made some progress.

 

[Sourish26]

Dear team I also applying for Canadian PR from India.but after reading all this staff about hemophilia I am really scared what to happens with my proceeding as my 3 yrs old son is a severe hemophilia A. He is under the treatment of Hemlibra in India which cost me around 4lakhs a year. Can any one tell me what I need to do..should I proceed further or not.

 

[scylla]

Dear team I also applying for Canadian PR from India.but after reading all this staff about hemophilia I am really scared what to happens with my proceeding as my 3 yrs old son is a severe hemophilia A. He is under the treatment of Hemlibra in India which cost me around 4lakhs a year. Can any one tell me what I need to do..should I proceed further or not.

Research the costs of Hemlibra in Canada. Unfortunately it doesn't matter what it costs in India. What matters is how much this treatment costs in Canada. To the best of my knowledge, this treatment costs the Canadian health care system well over $20,000 per year which unfortunately means your application could be refused due to excessive demand. You can still try applying. However be prepared for the possibility that you'll run into issues and may or may not be successful. Good luck.

 

[HemoMom]

I am also planning to apply for PR. My 7 yo son is having Severe hemophilia B. Even though he has severe factor deficiency he is less symptomatic. He takes medicine once a year only. How can I calculate my son's treatment cost at Canada?. Our consultant told us that there is only 50/50 chance for us to get PR. equally worried. Please update if there is any progress in any application.

 

[canuck78]

I am also planning to apply for PR. My 7 yo son is having Severe hemophilia B. Even though he has severe factor deficiency he is less symptomatic. He takes medicine once a year only. How can I calculate my son's treatment cost at Canada?. Our consultant told us that there is only 50/50 chance for us to get PR. equally worried. Please update if there is any progress in any application.

Should give you the approximate cost. Although he is not currently requiring a lot of treatment whether he is anticipated to require more treatment as he ages will be a factor.

https://www.formulary.health.gov.on.ca/formulary/

 

[canuck78]

Dear team I also applying for Canadian PR from India.but after reading all this staff about hemophilia I am really scared what to happens with my proceeding as my 3 yrs old son is a severe hemophilia A. He is under the treatment of Hemlibra in India which cost me around 4lakhs a year. Can any one tell me what I need to do..should I proceed further or not.

Between access to therapy and cost you may be better staying in India.

 

[HemoMom]

Should give you the approximate cost. Although he is not currently requiring a lot of treatment whether he is anticipated to require more treatment as he ages will be a factor.

https://www.formulary.health.gov.on.ca/formulary/

Thanks much for the response. But the quoted site does not have our drug listed. Meanwhile I tried to find the estimated cost from the site below,

https://www.cihi.ca/en/patient-cost-estimator

from the given data set (2015-2019),an average total estimated cost of $15500 is reflected per year(hospital cost + physician cost, rounded off figure). Still i am not sure whether the price of the drug is included in the particular calculation.

 

[canuck78]

Thanks much for the response. But the quoted site does not have our drug listed. Meanwhile I tried to find the estimated cost from the site below,

https://www.cihi.ca/en/patient-cost-estimator

from the given data set (2015-2019),an average total estimated cost of $15500 is reflected per year(hospital cost + physician cost, rounded off figure). Still i am not sure whether the price of the drug is included in the particular calculation.

That would usually mean the drug is not covered by ODB in Ontario a,though the site is a bit glitchy.