Breast cancer organisations turned out in force at Valuing Life, a Parliamentary Medicines Access Summit. We all did our best to make the case for broader, faster access to modern medicines to improve the lives of breast cancer patients. 

The Summit was organized by Patient Voice Aotearoa Trustees Malcolm Mulholland and Lisa Burns with the support of Medicines New Zealand and was hosted in Parliament’s Grand Hall by Hon. David Seymour, Associate Minister of Health and Minister of Pharmac, and MP Todd Stephenson. BCAC, Breast Cancer Foundation NZ, Breast Cancer Cure and Sweet Louise attended, along with a diverse range of charities representing patients with cancers, diabetes, cystic fibrosis, rare disorders and a broad spectrum of other diseases. Paula Bennett, Pharmac’s new Board Chair, attended as did CEO, Sarah Fitt, a number of Pharmac staff and Manatū Hauora Ministry of Health officials, including the Director General of Health Diana Sarfati and the Ministry’s Deputy Director General Strategy, Policy and Legislation. Clinicians, researchers and industry representatives also attended, with all stakeholders leaping at the opportunity to share their knowledge and experience in seeking a better medicines system that delivers greater, faster access and better health outcomes for patients. 

Aotearoa New Zealand sits at the absolute bottom of the 32 OECD countries for investment in medicines and access to vital treatments that give people longer, healthier lives. This has resulted in breast cancer patients missing out on at least 20 medicines that are recommended in international guidelines and funded across the world. Thirteen of these medicines and many more indications (conditions for which a medicine can be prescribed) are funded in Australia, with more on the way there. This matters because without these medicines cancers advance and people die earlier than they should. Apart from the unfairness and tragedy of this, there is also a cost to society, as these people can no longer contribute to their families, workplaces or communities. Failure by successive Governments to invest adequately in medicines translates into increased costs to other parts of the public healthcare system (for example cancer patients needing emergency hospital care when side effects of outdated medicines cannot be managed).  Inadequate public investment in medicines also forces patients to fundraise for desperately needed treatment, creating unacceptable socioeconomic and ethnic inequities, with widening gaps in access and outcomes for Māori. The patient groups at the Summit made it absolutely clear that the same applies across all treatable diseases.

The Summit gave us hope that there is growing recognition by politicians and health officials of the resulting negative impacts on people, whānau, workplaces and communities. What is yet to be seen is whether the collective will for change will be translated into actions that will achieve meaningful reform. 

We heard a moving and informative opening address from Fiona Tolich, Spinal Muscular Atrophy advocate and now medical refugee, forced to live in Australia so she can access treatment. Emma Purchase spoke of the horrendous experience of her husband’s diagnosis with late-stage bowel cancer and the crushing financial pressure of needing a medicine that is funded worldwide but not in our country. 

Doctors treating a wide range of diseases spoke of the frustration and anguish of being unable to provide the best treatments for their patients. They urged the Government to recognise the long-term societal benefits of keeping people healthy and asked that New Zealand benchmark its spending to the OECD average instead of the current one third of that figure. They noted that Pharmac’s processes are siloed, opaque and far too slow, with medicines recommended in international guidelines and funded overseas taking years to register and assess here. Even those that make it onto Pharmac’s ‘Options for Investment’ list can remain permanently unfunded given the low, capped medicines budget. Greater communication and transparency are needed between Pharmac and clinicians, patients and industry. Stakeholders should have the opportunity for input throughout assessment processes. We could take the UK’s lead in including expert clinicians and patient representatives from affected disease areas in evaluation of medicines. Amendment of the Pae Ora legislation governing Pharmac’s objectives is needed to shift their focus from spending within budget to best health outcomes for patients. 

Researchers and companies developing innovative health technologies spoke of the great opportunities to make treatments more targeted and effective for better patient outcomes. They discussed the health and economic benefits of catching up with the rest of the world, horizon scanning for emerging technologies and fast adoption of innovation, as well as investing in New Zealand and collaborative trans-Tasman and international research. NZ patients are often excluded from international clinical trials because we don’t provide the basic standard of care that a new medicine will be compared with. Better access would open opportunities for trial participation, while demonstrating to companies that it is worth bringing their new medicines here as they’re likely to be funded.  

Workshops brought participants together to discuss successful overseas models of health technology assessment and potential enhancements to NZ’s system; building a new Medicines Strategy to help future-proof the health system; how to bring a stronger patient/consumer voice into decision making; and how to optimise precision health, clinical research and horizon scanning. 

There was a striking level of agreement across the diverse stakeholder groups at the Summit on the need for deep reform of NZ’s medicines system and the elements needed to achieve this.  A more transparent, collaborative, inclusive and generous approach is needed, with patient outcomes at the heart of the system. Bureaucratic processes must become less complex, faster and more efficient to deliver the most effective medicines to people when they need them. Without a greatly increased medicines budget nothing will change for patients. Benchmarking our medicines budget to the OECD average would lift us from our dire position at the bottom to a level in keeping with our economy and aspirations. 

BCAC looks forward to working with politicians, health officials, clinicians, researchers, industry, other patient groups and all stakeholders to continue the momentum to build a modernised medicines system that breast cancer patients and all New Zealanders will benefit from.   

5th May 2024

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