All posts by mcfadyena

To me, this is the most difficult part to accept. No appeal? No opportunity to ensure the decision was rendered correctly before we condemn this little boy to a life of pain and suffering…to death? Prisoners on death row – prisoners there for the heinous crimes they have committed – have multiple opportunities to appeal their decided fate. Before that, their fates get decided by collections of people, people who have the opportunity to hear all viewpoints, all expert testimony, everything. They exhaust all avenues in making death sentence rulings, and then we allow those prisoners the opportunity to appeal and fight their fate. Not so for this little boy, it appears, and that will never be OK with me.  ~Andrew McFadyen, Executive Director, The Isaac Foundation

Late last night, I boarded a plane to Fredericton with hopes of meeting with the Minister of Health, Victor Boudreau, about 10-year-old Morgan Doucet.  Recently, the Minister denied access to the life-saving medication that Morgan needs immediate access to, thereby condemning Morgan to a life of pain and suffering, and immediately signalling that Morgan’s care should enter a palliative approach to his disease.

This is NOT OK, for a whole host of reasons, not least of which is that we CAN help Morgan, we can stop his disease progression, and we can do it quickly with access to the treatment he needs.

This is not OK because the treatment Morgan needs has been approved by Health Canada for almost 2 years now, and it’s being used to help save the lives of  33 patients throughout the country, while being fully reimbursed for use in patients in Saskatchewan, Ontario, and Quebec.  It’s also funded in most developed countries throughout the world – including the UK – where they recently took steps to fund every patient that needs access immediately.

This is not OK because Morgan’s review was done by one person alone, a person who has never used this treatment before and a person who isn’t  a practicing physician anymore.  He’s a bureaucrat, paid by the government of Ontario to review files and render life and death decisions about kids – life and death decisions that come without rigorous debate and input from the true experts in the field.

This is not OK because the overwhelming evidence and recommendations by those true experts in the field all conclude that this drug works and should be given to patients immediately in order to stave off the ravages of the disease.  It has been prescribed by Morgan’s genetics specialist, it has been recommended for use in patients by the Canadian Expert Opinion on Morquio Syndrome and it is recommended as the front line treatment for Morquio Syndrome in the International Treatment Guidelines for Morquio Syndrome.  In fact, it’s considered the gold standard of care for patients suffering from this disease, and it’s inhumane and unethical to deny patients the help they need when they need it most.

This is not OK because we are allowing those bureaucrats and politicians to overrule and contradict medical experts, clinicians, and researchers, regarding best practice and treatment for this little boy suffering from this devastating disease.  In essence, the Minister and his bureaucrats are making clinical decisions where they are not qualified to do so.

And this is not OK because denying life-saving treatment to dying kids is not what our Health Care System is supposed to stand for, it’s not the principles that our country and our Medicare Act were founded on, and it’s not who we want to be as a Canadian People.

With all this on my mind, I took the late flight here for an arrival in New Brunswick in the middle of the night.  I came  to Question Period this morning to hear MLA Jake Stewart ask the hard questions of the Minister that he’s been avoiding answering.  Jake was poignant, thoughtful, and strong in his belief that Morgan should receive access to this drug.  After all, the Liberals themselves said last year that they “can – and MUST – do better” for our kids suffering from rare diseases.

With three questions asked, Minister Boudreau decided not to provide proper answers.  He started by saying there is a process, and that process includes a CDR report and they won’t fund drugs until that process is complete (it is, and was completed a long time ago).  He neglected to mention that no MPS drugs ever get the blessing of the CDR panel, yet New Brunswick is paying for every other drug for MPS diseases that are currently on the market.  He neglected to point out that the only patient with MPS in this province that isn’t receiving the life saving drug they need is Morgan.  He neglected to say that this has less to do with what the experts say and more to do with the cost of the drug, something that should never be a hinderance to proper care in this country.

Minister Boudreau commented on the process used – Morgan’s file was sent to a reviewer in Ontario to make a decision whether to treat or not.  One reviewer.  With no avenue for appeal after any decision is rendered.  He didn’t comment on that in Question Period, but after the decision was delivered I asked the Ministry of Health how we can appeal the ruling.  I was ignored.  I asked the Minister of Health 7 times for a meeting or information about how we can appeal the ruling.  I was ignored.  And I asked the Premier multiple times for a meeting to discuss an appeal.  As you all know, I received a note telling me that he was unable to meet, with apologies “for the inconveniences this may cause.”

To me, this is the most difficult part to accept.  No appeal?  No opportunity to ensure the decision was rendered correctly before we condemn this little boy to a life of pain and suffering…to death?  Prisoners on death row – prisoners there for the heinous crimes they have committed – have multiple opportunities to appeal their decided fate.  Before that, their fates get decided by collections of people, people who have the opportunity to hear all viewpoints, all expert testimony, everything.  They exhaust all avenues in making death sentence rulings, and then we allow those prisoners the opportunity to appeal and fight their fate.  Not so for this little boy, it appears, and that will never be OK with me.

As I was typing this entry, Minister Boudreau dropped over to meet with me to discuss Morgan and his plea for help.  I am thankful that he did, as I was able to present everything I’ve written above.  He made a commitment to take a look at this case but truly believes in the process put in place.  In his words, he will make not promises or commitments, but he will look at things and get back to me.

Knowing this, I implore Minister Boudreau to take a real look at this case and seek a new review of Morgan’s application.  I asked Minister Boudreau to seek outside opinions from a panel of 3 or 5 International and Canadian experts that deal front-line with this disease and this treatment each and every day.  I asked Minister Boudreau to allow a rigorous discussion on all available evidence that exists on this drug and the impact it has on patients, and I asked for expediency because it’s unethical to make a child and his family wait.

I asked this to allow for a transparent and fair process for Morgan.  His life depends on it and it’s the right thing to do.  And in the end, if the Minister doesn’t want to listen to and seek feed back from clinical expert opinion, patient reported outcomes, peer-reviewed published journals, etc., then who will he listen to?  The opinion of 1 person who has never used this treatment and didn’t engage with those experts to help make his decision on Morgan’s fate?

If that’s the case, it’ NOT OK.

I’ll be here for a short while and will be putting out a PR tomorrow morning so that media can cover this story if they choose.  Thank you for all of your support over the past little while – our last entry was seen over 20,000 times in a few short days.  Sharing Morgan’s story is helpful, and staying ready to fight means the world to us.

I’ll update with any news as it develops.

To me, this is the most difficult part to accept. No appeal? No opportunity to ensure the decision was rendered correctly before we condemn this little boy to a life of pain and suffering…to death? Prisoners on death row – prisoners there for the heinous crimes they have committed – have multiple opportunities to appeal their decided fate. Before that, their fates get decided by collections of people, people who have the opportunity to hear all viewpoints, all expert testimony, everything. They exhaust all avenues in making death sentence rulings, and then we allow those prisoners the opportunity to appeal and fight their fate. Not so for this little boy, it appears, and that will never be OK with me.  ~Andrew McFadyen, Executive Director, The Isaac Foundation

Late last night, I boarded a plane to Fredericton with hopes of meeting with the Minister of Health, Victor Boudreau, about 10-year-old Morgan Doucet.  Recently, the Minister denied access to the life-saving medication that Morgan needs immediate access to, thereby condemning Morgan to a life of pain and suffering, and immediately signalling that Morgan’s care should enter a palliative approach to his disease.

This is NOT OK, for a whole host of reasons, not least of which is that we CAN help Morgan, we can stop his disease progression, and we can do it quickly with access to the treatment he needs.

This is not OK because the treatment Morgan needs has been approved by Health Canada for almost 2 years now, and it’s being used to help save the lives of  33 patients throughout the country, while being fully reimbursed for use in patients in Saskatchewan, Ontario, and Quebec.  It’s also funded in most developed countries throughout the world – including the UK – where they recently took steps to fund every patient that needs access immediately.

This is not OK because Morgan’s review was done by one person alone, a person who has never used this treatment before and a person who isn’t  a practicing physician anymore.  He’s a bureaucrat, paid by the government of Ontario to review files and render life and death decisions about kids – life and death decisions that come without rigorous debate and input from the true experts in the field.

This is not OK because the overwhelming evidence and recommendations by those true experts in the field all conclude that this drug works and should be given to patients immediately in order to stave off the ravages of the disease.  It has been prescribed by Morgan’s genetics specialist, it has been recommended for use in patients by the Canadian Expert Opinion on Morquio Syndrome and it is recommended as the front line treatment for Morquio Syndrome in the International Treatment Guidelines for Morquio Syndrome.  In fact, it’s considered the gold standard of care for patients suffering from this disease, and it’s inhumane and unethical to deny patients the help they need when they need it most.

This is not OK because we are allowing those bureaucrats and politicians to overrule and contradict medical experts, clinicians, and researchers, regarding best practice and treatment for this little boy suffering from this devastating disease.  In essence, the Minister and his bureaucrats are making clinical decisions where they are not qualified to do so.

And this is not OK because denying life-saving treatment to dying kids is not what our Health Care System is supposed to stand for, it’s not the principles that our country and our Medicare Act were founded on, and it’s not who we want to be as a Canadian People.

With all this on my mind, I took the late flight here for an arrival in New Brunswick in the middle of the night.  I came  to Question Period this morning to hear MLA Jake Stewart ask the hard questions of the Minister that he’s been avoiding answering.  Jake was poignant, thoughtful, and strong in his belief that Morgan should receive access to this drug.  After all, the Liberals themselves said last year that they “can – and MUST – do better” for our kids suffering from rare diseases.

With three questions asked, Minister Boudreau decided not to provide proper answers.  He started by saying there is a process, and that process includes a CDR report and they won’t fund drugs until that process is complete (it is, and was completed a long time ago).  He neglected to mention that no MPS drugs ever get the blessing of the CDR panel, yet New Brunswick is paying for every other drug for MPS diseases that are currently on the market.  He neglected to point out that the only patient with MPS in this province that isn’t receiving the life saving drug they need is Morgan.  He neglected to say that this has less to do with what the experts say and more to do with the cost of the drug, something that should never be a hinderance to proper care in this country.

Minister Boudreau commented on the process used – Morgan’s file was sent to a reviewer in Ontario to make a decision whether to treat or not.  One reviewer.  With no avenue for appeal after any decision is rendered.  He didn’t comment on that in Question Period, but after the decision was delivered I asked the Ministry of Health how we can appeal the ruling.  I was ignored.  I asked the Minister of Health 7 times for a meeting or information about how we can appeal the ruling.  I was ignored.  And I asked the Premier multiple times for a meeting to discuss an appeal.  As you all know, I received a note telling me that he was unable to meet, with apologies “for the inconveniences this may cause.”

To me, this is the most difficult part to accept.  No appeal?  No opportunity to ensure the decision was rendered correctly before we condemn this little boy to a life of pain and suffering…to death?  Prisoners on death row – prisoners there for the heinous crimes they have committed – have multiple opportunities to appeal their decided fate.  Before that, their fates get decided by collections of people, people who have the opportunity to hear all viewpoints, all expert testimony, everything.  They exhaust all avenues in making death sentence rulings, and then we allow those prisoners the opportunity to appeal and fight their fate.  Not so for this little boy, it appears, and that will never be OK with me.

As I was typing this entry, Minister Boudreau dropped over to meet with me to discuss Morgan and his plea for help.  I am thankful that he did, as I was able to present everything I’ve written above.  He made a commitment to take a look at this case but truly believes in the process put in place.  In his words, he will make not promises or commitments, but he will look at things and get back to me.

Knowing this, I implore Minister Boudreau to take a real look at this case and seek a new review of Morgan’s application.  I asked Minister Boudreau to seek outside opinions from a panel of 3 or 5 International and Canadian experts that deal front-line with this disease and this treatment each and every day.  I asked Minister Boudreau to allow a rigorous discussion on all available evidence that exists on this drug and the impact it has on patients, and I asked for expediency because it’s unethical to make a child and his family wait.

I asked this to allow for a transparent and fair process for Morgan.  His life depends on it and it’s the right thing to do.  And in the end, if the Minister doesn’t want to listen to and seek feed back from clinical expert opinion, patient reported outcomes, peer-reviewed published journals, etc., then who will he listen to?  The opinion of 1 person who has never used this treatment and didn’t engage with those experts to help make his decision on Morgan’s fate?

If that’s the case, it’ NOT OK.

I’ll be here for a short while and will be putting out a PR tomorrow morning so that media can cover this story if they choose.  Thank you for all of your support over the past little while – our last entry was seen over 20,000 times in a few short days.  Sharing Morgan’s story is helpful, and staying ready to fight means the world to us.

I’ll update with any news as it develops.