More funded nutritional supplements on the cards for people with inherited metabolic diseases

Media release Medicines

Pharmac – Te Pātaka Whaioranga is proposing to fund more nutritional supplements for people with inherited metabolic diseases and make them available to people closer to home.

“We understand that people living with inherited metabolic diseases want more choice in the options available to support their health and wellbeing,” says Pharmac’s Director, Pharmaceuticals, Geraldine MacGibbon.

Inherited metabolic diseases are genetic, lifelong conditions, usually identified through screening at birth. Metabolic diseases can cause compounds in the body to build up to toxic levels, leading to adverse effects such as cognitive impairment.

People with inherited metabolic diseases often need to follow very restrictive diets and use specific supplements to meet their nutritional needs.

“Previously some nutritional supplements have only been available through Health New Zealand | Te Whatu Ora hospitals. To increase choice and access we’re now proposing to make more of the currently funded nutritional supplements available through community pharmacies. We hope this will make it easier for people to access what they need.”

There are about 120 people in New Zealand who would use these supplements in the first full year of funding, increasing by approximately 3-4 people each year.

If the proposal is approved, the range of funded nutritional supplements would increase. This includes some that would be funded for the first time. The new treatments, supplied by Nutricia, would be suitable for people with a range of inherited metabolic diseases including:

  • phenylketonuria (PKU)
  • maple syrup urine disease
  • homocystinuria
  • tyrosinemia
  • glutaric aciduria 
  • organic acidaemias
  • ECHS1-related disease or short chain enoyl coA hydratase deficiency
  • urea cycle disorders
  • fatty acid oxidation disorders 

Feedback on this proposal will help Pharmac decide how to proceed with this proposal. Consultation closes 5:00 pm, Friday 5 July 2024 and feedback can be emailed to consult@pharmac.govt.nz

“Consultation is an important part of our funding process. It helps us make sure what we’re funding is going work best for the New Zealanders who use the treatments”.

If approved, the supplements would be available from 1 August 2024.