Identifying barriers and constraints for people with wet MD
A new report released in August this year, documents the experience of people with neovascular age-related macular degeneration (also known as wet MD) in the health system.
The project, commissioned by Eye Health Aotearoa (EHA) and Roche Products (NZ) Ltd, sought to identify health system constraints and barriers for people with wet MD.
Thirty-three patients with wet MD completed an online survey and participated in workshops. Ophthalmic nurses and optometrists also provided feedback.
The project reveals critical gaps in:
· awareness of MD prior to diagnosis,
· information gaps in understanding the condition and its treatments,
· access to timely and consistent treatment, and
· lack of patient support.
Other issues identified were health workforce shortages and lack of accurate data to inform policy and decisions.
Bronwyn Anderson, a patient living with AMD, noticed changes to her vision and raised concerns during a routine eye check but was told there was nothing wrong. Trusting her instincts, she later sought a second opinion – and was diagnosed with macular degeneration after significant vision loss had already occurred.
“I had to advocate for myself to get diagnosed after my concerns were initially dismissed. Even then, I wasn’t given any information about the condition or referred to any support. I found MDNZ on my own and they were the first to really help. Without their support, it would’ve been much harder to manage. Not everyone has the time or confidence to keep pushing for answers.”
Bronwyn’s experience is echoed across many patient stories captured in the report – stories that underline the need for systemic improvements in early detection, communication, and access to support.
A large majority of patients (81%) knew little or nothing about wet MD before being diagnosed. Two-thirds (67%) of those diagnosed had to travel long distances for treatment, with those in rural areas particularly affected. Patients also reported experiencing feelings of anxiety (23%), compounded by a lack of clear information and limited access to support services.
The report identified opportunities for improvement and EHA is calling on the government to:
● Ensure a coordinated plan to address inequities in access to treatment, support services, and early detection for vision-threatening conditions like wet AMD
● Invest in a national awareness and prevention programme – raise public awareness about eye health, support early detection through better public health messaging and screening, and empower New Zealanders to protect their vision
● Fund patient organisations – sustainable funding is critical for patient groups to provide essential information, education, and psychosocial support to those living with eye disease
● Strengthen collaboration – Government, health providers, communities and the private sector must work together to deliver equitable, patient-centred care across the country.
Eye Health Aotearoa (EHA) is an umbrella organisation that provides a unified voice on eye health to policy and decision makers. It includes representatives from key eye health organisations such as patient groups, ophthalmologists, optometrists and researchers.
MDNZ General Manager, Sarah Berman, is a trustee of EHA, representing the interests of people with MD in this group.
MDNZ would like to sincerely thank all those who answered the call to participate in this research. Your contribution will enable MDNZ, alongside EHA, to advocate for better outcomes for people with MD.
You can read the full report at https://www.eyehealthaotearoa.org.nz/eha_roche_nz_report_2025