Fatal disease patients ignored by National Government

Our second email... and the reply from the Health Minister Jonathon Coleman following...

I am writing to you again regarding the Pompe disease patients in New Zealand who are being denied treatment by our government. 
 
There are 11 adult patients in NZ, there were 12, but one passed away from Pompe disease late last year at the age of 54.  There is a medicine which halts the progression of this fatal disease.  Myozyme has been FDA approved since 2006 and is available in nearly 80 countries around the world.  NZ is one of just three OECD countries which deny their citizens access to this life saving treatment.  The other countries are Austria and Iceland. 
 
In a recent round of extra funding for a “Rare Disease Pilot” Infantile Onset Pompe Disease (IOPD) was given funding for Myozyme.  Yes, this was great, well it would be if we actually had any infantile patients.  We have zero.  But as mentioned, we do have 11 Late Onset Pompe Disease (LOPD) patients who were left abandoned yet again.
 
We have a family with three sisters who have Adult Onset Pompe Disease.  How disgusting is it that they are being abandoned by the government? 
 
The government continues to say that they cannot interfere with PHARMAC decisions.  PHARMAC is a government entity.  The government is responsible for whether or not PHARMAC is able to fund medicines.  Yet time and time again the government washes their hands of responsibility by saying it is up to PHARMAC to make the decisions.
 
What we need to know from you is;
 

1. If you are part of the government from September 23 2017, will you commit yourself to ensuring that Myozyme is funded for all ages of patients in New Zealand with Pompe disease? 

 

1. Will you do this urgently before any more of our patients die?

 
 
Yours Sincerely
 
Allyson Lock
President
New Zealand Pompe Network
 

Reply from Health Minister Jonathon Coleman...

 
Dear Ms Lock
 
On behalf of Hon Dr Jonathan Coleman, Minister of Health, thank you for your email of 6 August 2017 with a letter from the New Zealand Pompe Network.
 
The Minister has noted your comments and advises that there is no further update on this matter his last correspondence of 30 May 2017.
 
Thank you for writing.
 
Kind regards,
 
Melissa Buckle
Private Secretary (Admin) I Office of the Hon Dr Jonathan Coleman
Minister of Health, Minister for Sport and Recreation

And my reply to the Minister...

Dear Ms Buckle
 
Thank you for the reply.  But it clearly didn’t answer the questions I asked. 
As Mr Coleman is an MP, he works for the taxpayers of New Zealand and is answerable to us.
Please advise Mr Coleman that we are seeking answers to these questions as we are wanting to use his replies in our campaign leading up to the general election.
 
What we need to know from you is;
 

1. If you are part of the government from September 23 2017, will you commit yourself to ensuring that Myozyme is funded for all ages of patients in New Zealand with Pompe disease? 

 Yes or No?

1. Will you do this urgently before any more of our patients die?

Yes or No?
 
Obviously, if he refuses to answer, it is pretty telling about his contempt for Pompe disease patients.
 
 
Yours sincerely
 
Allyson Lock (Mrs)