Pharmac – Te Pātaka Whaioranga is funding more
nutritional supplements for people with inherited metabolic
diseases from 1 February 2024.
“We understand that
people living with inherited metabolic diseases, like
phenylketonuria, will benefit from a greater choice of
supplements 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.
“We expect approximately 120 people in New
Zealand will use these supplements in the first full year of
funding, increasing by approximately 3-4 people each
year.”
“We are pleased to have more treatment
options available for this group of people, especially
considering the significant constraints currently of our
fixed budget and our ability to make new investments. Our
team works hard to negotiate with suppliers to manage
currently funded medicines and invest in new
ones.”
The range of funded nutritional supplements
will increase. This includes some that will be funded for
the first time. The new treatments, supplied by Cortex
Health and Vitaflo, will be suitable for people with a range
of inherited metabolic diseases
including:
- phenylketonuria
- maple syrup
urine
disease - homocystinuria
- tyrosinemia
- glutaric
aciduria - propionic acidaemia
- organic
acidaemias - ECHS1-related disease or short chain
enoyl coA hydratase deficiency - urea cycle
disorders - glycogen storage
disease
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“We’re grateful for the feedback we
received from advocacy groups and clinicians in response to
the original consultation on our proposal to fund these
supplements. It is important we use this feedback to inform
our decisions. We’ve heard there is more to consider
regarding access to these treatments, so we will continue
these conversations with the health sector and the affected
communities.”
Decision
to fund supplements for PKU and other inherited metabolic
diseases
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