The patient voice should be included from the start to ensure equity for all people requiring pharmaceutical treatment.
RDNZ believes that ensuring the patient voice is part of the process will make a difference to the health and wellbeing of patients with rare disorders, who are currently institutionally discriminated against through the purchasing process.
New Zealand lags far behind other countries in funding medicines for rare disorders.
Although patient factors such as health benefits and need appear to be part of the factors for consideration as part of the decision-making process, they don’t seem to be given as much weighting as cost considerations.
These health benefits need to have an equitable weight along with input from health economists.