There are calls for the government to give PHARMAC more money for high-cost medication needed for rare diseases.
They come after a Christchurch family's battle to get their five-year-old son James life-changing medication for Hunters disease.
He's been approved for a short course of the drug Elaprase - while the only other child with the illness in the country gets the full course - at a cost to PHARMAC of $500,000 per year.
That boy's mother, Kirsty Peacock, says it's essential to help these families.
"There is no way that patients with rare diseases even really get a look in generally, so I believe Government actually need to look at putting another budget in place for PHARMAC."
Ms Peacock says through her years of battling with the government to get her son's medication - she's found they almost make people beg for medication she says they deserve.
Photo: James Marquardt (supplied)