Rare Disorders says the review should be carried out in a more positive way. Photo:
A group representing people with rare health disorders has joined other organisations in expressing concern about Pharmac's review of rule 8.1b, related to the funding of child cancer treatments.
Pharmac is seeking feedback on rule 8.1b and whether there are good reasons why paediatric cancer medicines should be treated differently to everything else.
Pharmac said this is because no other child illness receives automatic access to medicine.
However, Rare Disorders said the review needs to be done in a more positive way, and that any limit to medicines in an attempt to improve equity is unethical.
The organisation's chief executive, Michelle Arrowsmith, said Pharmac's approach is keeping people sick.
"We need to be looking at how we can spend money to save money," said Michelle Arrowsmith. She said emergency room visits, hospital stays, primary and specialist care costs all rise when patients can't access the treatments they need.
"Pharmac needs to be smarter in its approach."
Michelle Arrowsmith said we can't ignore the inequity and exclusion in all areas of healthcare in New Zealand.
"Pharmac themselves know that their current processes and current system doesn't work well for those with rare disorders."
Pharmac is currently seeking submissions on the proposed changes. The timeframe for submissions has been extended until 31 January 2023.