A five-year-old Christchurch boy James Marquardt has been approved for the funding to get treatment for his rare disease Hunters, a report has revealed recently.
The disease has until now been found in only two children in New Zealand, one of whom is James. The boy has already been receiving the funding by PHARMAC for the treatment therapy.
An initial refusal for the funding by the Crown entity had however largely disappointed the boy's father, the report says. But, he is extremely happy with the recent change in the entity's decision. Mr. Paul Marquardt has thanked the medical director Dr. Peter Moodie of the firm at personal level.
As per the findings, the case of James has led to a declaration of an investigation too. The inquest would be aimed at finding out the way people with rare disease are treated by the healthcare system.
It is being said that a parliamentary committee has been appointed by the New Zealand Organization for Rare Disorders, which would now onwards assess if sufferers can easily access medications.
"They have a really tough job and we understand they have a limited resource but what we need to do is say to the Government we need to look at the pool available to PHARMAC", the father avowed.