Consumer and Patient Working Group

Dr Malcolm Mulholland MNZM (Chair)

Dr Mullholland, Ngāti Kahungunu, from Palmerston North, will chair the new Consumer and Patient Working Group to work with Pharmac. Dr Mulholland co-founded Patient Voice Aotearoa (PVA) with his late wife Wiki in 2019 to advocate for better access to medicines, after finding that the medicine she needed, Ibrance, was not funded by New Zealand’s health system.

Through PVA, several high-profile campaigns were launched by Dr Mulholland, including “The Right to Live” which presented petitions to Parliament for the funding of critical drugs for cancer, cystic fibrosis and diabetes patients. In 2023 Dr Mulholland launched the “Our Lives Matter” roadshow around NZ to raise awareness of the medicine crisis and co-facilitated the “Valuing Life NZ Medicines Access Summit” in 2024.

Dr Mulholland was named a Member of the NZ Order of Merit in the 2025 King’s Birthday Honours list for his services to health and Māori. He was crowned as a Kiwibank Local Hero in 2024 for his advocacy work. 

Libby Burgess MNZM 

Libby, from Auckland, is a breast cancer survivor and Chair of Breast Cancer Aotearoa Coalition (BCAC) who is passionate about improving the lives of New Zealanders with breast cancer.

She serves as a patient representative on the Breast Special Interest Group of NZ specialists and is an affiliate member of Breast Cancer Trials (Australia and New Zealand). Libby is a former member of the Consumer Reference Group, He Ara Tangata, of New Zealand's Cancer Control Agency.

Libby has actively campaigned on a range of breast cancer issues including access to screening, timely diagnosis and treatment, innovative medicines and provision of breast reconstructive surgery. She is an advocate for better and equitable access to clinical trials and to timely high quality cancer services for all New Zealanders. Libby has contributed to Guidelines for the Treatment of Early Breast Cancer, Standards of Service Provision for Breast Cancer Patients in New Zealand and New Zealand’s Advanced Breast Cancer Guidelines.

She is a biological scientist (retired) and was made a member of the New Zealand Order of Merit (MNZM) in 2011 for services to women's health.

Tim Edmonds

Tim, from Auckland, has held senior leadership roles at health charities including Cure Kids, Well Foundation, and Leukaemia & Blood Cancer New Zealand (LBC).

In his current roles as CEO of LBC and member of the Blood Cancer Alliance, Tim works collaboratively with patient groups, clinicians, and policy makers to improve access to modern therapies and international standards of care for blood cancer patients.  Tim is also the Chair of CANGO (Cancer Alliance of NGOs), an advocacy alliance of 10 prominent cancer charities representing the interests of all cancer patients.

Chris Higgins

Chris Higgins, from Wellington, is Chief Executive of Rare Disorders NZ (RDNZ), which represents the collective voice of people with a rare disorder and their whānau – some 300,000 New Zealanders with one or more of the over 7,000 known rare disorders. RDNZ includes in its collective over 50 rare disorders support groups with an interest in improved access pathways to rare disorder medicines

Chris has strong relationships in the health sector and Government, having spearheaded an advocacy campaign calling on Government to urgently implement the national Rare Disorders Strategy.

Chris began as a health services researcher, then held senior manager roles in the Northland, Waikato and Lakes health boards, and leadership roles in not-for-profit organisations such as Presbyterian Support (Northern), Spectrum Care, Brain Injury Auckland, and Muscular Dystrophy NZ. He was a trustee of the Human Rights for All Trust for nearly seven years, and Chair of New Zealanders for Health Research Board for two years.

Chris has a Master’s degree in political science and post graduate diploma in Health Services Management.

Francesca Holloway 

Francesca is from Auckland is Manager of Awareness and Advocacy for Arthritis NZ bringing vast experience in advocacy leadership across health and disabilities, education, children and youth-related sectors.

She currently sits on the Board of PolyEmp, an organisation that matches young disabled adults with employment opportunities. Francesca was a past CEO of the Deaf Association of New Zealand, Public Relations director at Presbyterian Support Services Otago, co-director of Dunedin YWCA, and primary school teacher in Frankton and Dunedin. Francesca was also appointed to the youth distribution committee of the NZ Lottery Board and is a published author of “The Working Mother’s Handbook” - a guide for working new and expectant mothers. Francesca was a Pharmac Consumer Advisory Committee member from 2015 to 2017.

Francesca has worked over 20 years at Arthritis NZ, a charity that raises awareness of arthritis and supports arthritis patients to manage their condition. Half that time she was Northern Regional Manager, training consumer advocates to facilitate consumer feedback on Arthritis NZ by reviewing educational information, providing consumer perspectives, and raising Māori and Pacific perspectives in advocacy programmes.

Trent Lash 

Trent Lash, from Auckland, has championed patient voices since founding Heartbeats (Charitable Trust) in Auckland, after his own heart attack and angioplasty (stents) in 2019. Trent found as a heart patient that, after discharge from hospital, there was no primary, individualised support for heart event survivors in the community or primary healthcare sector.

It began for him as a founding member of Youthline (Otago). Since 2019, Heartbeats has grown to over 200 members in Auckland with another 40 online members from Whangārei to Christchurch. With a focus on vulnerable communities, Heartbeats is actively engaged with several Māori Iwi members in the Waikato and Bay of Plenty.

A non-profit, community-led, peer-to-peer support organisation, Heartbeats is based on the Alcoholics Anonymous model with the motto ‘sharing the journey’ to foster a community of belonging and acceptance.

Trent says, Heartbeats also introduced a national HeartBUDDY system; a ground-breaking exercise-based cardiac rehabilitation programme developed in collaboration with Auckland University and AUT. Heartbeats receives no government funding.

Gerard Rushton 

Gerard, from Ashburton, is Chair of the Board of Directors for The Meningitis Foundation Aotearoa, who became involved with the Foundation in 2015 with wife Claire after losing their only daughter Courtenay at age 16, in 2014, to this devastating but preventable disease.

The Meningitis Foundation Aotearoa strives to educate New Zealanders with accurate information to raise awareness of meningitis and support those affected by the disease, whilst also campaigning for vaccine access and Government policy changes.

Gerard and Claire co-own successful agricultural businesses in the Canterbury region. Gerard has a 30-year history of community involvement and extensive governance experience, as Chairman of Mid Canterbury Rugby Union, and member of the NZRU Appointments and Remuneration Committee.

Their strong community, sports and business connections have helped them raise awareness of vaccines, with the aim of bringing about change at Government level to eradicate meningitis.

Rachel Smalley MNZM (Deputy Chair)

Rachel Smalley is based in Auckland and spent almost five years giving voice to patients and their families impacted by inequities in New Zealand's medicine access framework. 

In 2020, Rachel established The Medicine Gap, a storytelling platform focused on improving access to modern medicines. Her work helped to bring public and political attention to the lived experience of individuals and families struggling with the consequences of Pharmac’s funding decisions and contributed to wider conversations around Pharmac reform. 

Her journalism career spans more than two decades where she worked across television, radio, print, and digital platforms as a programme host, journalist, and foreign correspondent. 

Rachel was appointed a Member of the New Zealand Order of Merit (MNZM) in 2025 for services to health advocacy and journalism, and was a finalist in the 2024 Kiwibank New Zealander of the Year Awards. 

Tracy Tierney

Tracy is based in Christchurch and was recently appointed to her role as CE of Epilepsy New Zealand. She says she draws inspiration from whānau living their best lives with epilepsy.

As a senior leader in local government over the preceding 10 years she worked closely with central government representatives, so she understands their drivers and how to work effectively together on gnarly challenges to achieve good outcomes for stakeholders.

Her past role was Director of The Greater Christchurch Partnership, a voluntary coalition of local government, mana whenua and government agencies working collaboratively to address strategic challenges and opportunities for Greater Christchurch, particularly within the context of urban growth.

She also held senior leadership roles as GM Planning Regulation & Environment at Waimakariri District Council, GM Environmental Services at Timaru District Council, and Director Private Enterprise at KPMG NZ in Timaru.

Deon York

Deon York, from Wellington, has been an advocate for the bleeding disorders community for over 25 years. As CE of Haemophilia New Zealand, a patient-led organisation supporting people with inherited bleeding disorders, Deon has in-depth understanding of Pharmac’s engagement and procurement processes.

In his previous director role in the public sector focusing on patient and community engagement, he successfully led the development and implementation of a code applicable to Pharmac, setting expectations of patient engagement in the design, delivery, and evaluation of the health system.

Deon holds a Master’s degree in Medical Anthropology and postgraduate training in Public Health. He received an award from the World Federation of Haemophilia in 2024, recognising his global contribution to patient engagement, training, and advocacy. He has most recently been involved in a global collaboration on the WHO resolution on social participation, and its implications for both the New Zealand and overseas health sectors.