Jul 14, 2021, 1:22 PM

RDNZ presented a collective response on behalf of all those with medicines access issues who live with a rare disorder to the PHARMAC Review Panel last month. 

"We consulted with our collective of rare disorder support groups to ensure we focused on the key issues, plus created a template with messages to make it easy for groups to respond themselves," says CE Lisa Foster. "In total, the Panel received 14 submissions from rare disorder groups within our collective."

PHARMAC Review panel presentation(PDF)

Here is an update by Jaime Christmas, Chief Executive of the NZ Amyloidosis Patients Association 

"Together with Rare Disorders NZ and NZ Pompe Network, New Zealand Amyloidosis Patient Association met with representatives from the committee involved in an independent review of PHARMAC to represent the rare disorder community who face a barrier in New Zealand with medicine access. This review is for them to improve their present system by adding more value to New Zealand society. Additionally, PHARMAC also desires to ensure their responsiveness to the challenges facing the health system.  

From my point of view as a patient advocate, the panel is interested in understanding our viewpoints. They wanted to hear the hardships which the rare disorder community is presently facing. Their query on what PHARMAC can do better and what needs to happen to see change is good to hear. Questions posed on whether rare disease representation should sit within the PHARMAC model or be a separate entity displayed a concern on the panel's part to take actionable steps. Also, clarification on where funding should go from rare disease medicine access shows forward-looking.

However, some inquiries did highlight a lack of understanding of the characteristics, requirements and burdens experienced by people with rare conditions. Equally concerning is the inadequate knowledge of health technology and the advantage of embracing modern medicine. This short-sightedness accentuates the importance of the rare disease community to have a voice at the table.

All heavy-handed questions posed were articulately answered by Lisa Foster from RDNZ. Within the rare disease sphere, we are very fortunate to have Lisa at the helm of RDNZ together with her team. Tossed around like in a washing machine by various government entities and have had their funding vastly reduced, they keep championing for the likes of you and me. Change must happen. The length of time this would take is dependent on us supporting one another. Here's praying and hoping for a better future for all of us.

Vision comes alive when everyone sees where his or her contribution makes a difference - Ken Blanchard "

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