Where do the political parties stand in 2023?

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Solutions to the challenges of living with a rare disorder in Aotearoa abound, but meaningful change can only be driven with political will behind it.

We sent questions on the following priority issues to all the political parties leading up to the 2023 general election so that the rare disorder community can see where the parties stand with regards to improving the health and wellbeing of those impacted by a rare disorder.

We will update this page with the respective parties' responses as they come through.

Issue 1 – Complete National Rare Disorders Strategy

'Policy Question: Will your party commit to completing the development of, and implementing, the National Rare Disorders Strategy in the first quarter of 2024?

Labour	Yes. We were proud to commit to a comprehensive rare disorders strategy as part of our response to the Independent Pharmac Review. People and whānau with rare disorders will benefit greatly from having a strategy that leads to better, more timely services and more equitable support and outcomes. Once the strategy is completed, a Labour government would look to support agencies to implement the strategy as soon as possible.
National	National will progress the National Rare Disorders Strategy
Green Party	Yes - the Green Party believes we must invest in and ensure timely and equitable access to the most up-to-date research, procedures, medicines, diagnostics, vaccines and other health technologies—including rare disorder treatments. We know that people with rare disorders in New Zealand struggle to get access to the medicines and healthcare they need, and we’re committed to the development and implementation of a rare disorders strategy in Aotearoa.
Act	The ACT party supports the Ministry of Health’s development of the National Rare Disorders Strategy.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Issue 2 – Diagnosis

Policy Question 1: Will your party commit to an increase in funding for Genetic Health Services?

Labour	While we have been in government, we have substantially boosted resourcing in the public health system after 9 years of stagnation under the previous government. Currently, we have a network of publicly funded Genetic Health Services with hubs in Christchurch, Auckland and Wellington that do great work to diagnose genetic conditions, including some rare disorders. The Rare Disorders Strategy, once released, will outline further improvements that can be made to genetic health services to better cater to people with rare disorders. The Rare Disorders Strategy will also seek to seize the opportunities created by the health reforms. Previously, with 20 DHBs, the system was fractured and the range of services available could sometimes depend on location. The health reforms will enable improved access to specialist and culturally informed services across the motu, through both consultation and virtual liaison. Highly specialised services will be more accessible as the system is brought together. Additionally, with one health system, the strategy’s implementation will be more streamlined and consistent nationally.
National	National will explore current and future genetic testing funding and take advice from domain experts
Green Party	We will investigate increasing funding for Genetic Health Services. The Green Party knows we need universal, free and accessible diagnosis, treatment and management for all illnesses and injuries as part of a robust health system.
Act	ACT is developing its health policies, and these will be released closer to the election
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Policy Question2: Will your party commit to increasing screening for rare disorders e.g similar to the UK newborn screening initiative?

Labour	We are committed to an effective and equitable newborn screening programme. Currently, newborn screening such as through the heel prick test, is used to screen for several rare disorders that can be treated, or their impacts prevented through certain health care or dietary measures. As more rare disorders are discovered, new screening methods are also being developed, and there will be a need for ongoing review of screening as this knowledge increases. Screening will be one topic examined during development of the rare disorders strategy. Once the strategy has been completed, we will work with Te Whatu Ora to ensure that our Newborn Metabolic Screening Programme works for New Zealanders with rare disorders.
National	National will continue to monitor rare disorders screening with the advice of local domain experts and in the context of international screening programs.
Green Party	As part of our commitment to ensuring a rare disorders strategy is developed and implemented, we’ll explore increasing screening for rare disorders.
Act	ACT is developing its health policies, and these will be released closer to the election.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Issue 3 – Planned pathways for clinical care

Policy Question: Would your party initiate the establishment of a National Rare Disorder Centre of Excellence?

Labour	The rare disorders strategy is currently underway. As part of the strategy process, international best practice will be reviewed, including overseas rare disorders strategies, registries, and centres of excellence. Once the strategy is complete, it will inform services that will lead to more equitable outcomes for people and whānau with rare disorders. As the strategy has not yet been released, it would be too early to make a commitment around its contents. However, the unification of the health system enabled by the health reforms would allow the implementation of the Rare Disorders Strategy to proceed in an integrated and efficient manner. This would include strengthening access to highly specialised services nationally and any initiatives that would boost clinical understanding and research collaboration on Rare Disorders
National	This is not currently a manifesto item but we are open for dialogue and proposals
Green Party	The Green Party acknowledges the difficulty that people with rare disorders have accessing treatments and healthcare services and further work is needed within our health system to improve outcomes and care. We’ll ensure rare disorders are fully recognised and supported, with equitable access to health and social care, including by exploring whether the establishment of a National Centre of Excellence will achieve this.
Act	ACT is developing its health policies, and these will be released closer to the election.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Issue 4 – Access to disability and social supports

Policy Question: How would your party ensure the systemic inequities in disability and social supports, with respect to rare disorders, are addressed?

Labour	We acknowledge that many people with rare disorders also have disabilities. We believe a truly inclusive society is one in which people with disabilities can lead meaningful lives within their communities, based on respect and equality. During our time in government, we’ve delivered the biggest ever funding boost for Disability Support Services, and we’ve invested significantly in disability employment services to support people into meaningful and sustainable work. We were proud to launch a new Ministry of Disabled People (Whaikaha) last year to enable a true partnership between the disability community, Māori and the Government. Whaikaha is collaborating with Manatū Hauora on the rare disorders strategy (alongside RDNZ) to ensure the intersection between disability and rare disorders is thoroughly assessed. Once the strategy is completed, we will work with Whaikaha and other relevant stakeholders to achieve more equitable outcomes for people with both rare disorders and disabilities
National	National supports connected health care across providers and government departments and will explore how system navigators and co-ordinators can facilitate this.
Green Party	The Green Party vision for healthcare in New Zealand promotes improved determinants of health, holistic preventive interventions and comprehensive health services that remove health disparities and promotes equity for marginalised groups - including women, Māori, Pasifika, Rainbow, disabled and migrant peoples. We will work toward a public health system which is fully funded, delivering high quality and safe care, which everyone can access in a timely way, including people with rare disorders. There are also significant disparities in our health and income support systems for disabled people who receive unequal levels of support from Work and Income, ACC and the health system. Our safety net is complex and inadequate. The Green party will end these disparities by transform ACC into an Agency for Comprehensive Care. This will provide a minimum payment of 80% of the full-time minimum wage for everyone not in paid work because of a health condition or disability or health condition, including a rare disorder, regardless of cause.
Act	ACT supports the ongoing development of a national rare disorder strategy as a means of understanding how to best address systemic inequities with respect to rare disorders. Additionally, ACT pushed for the inclusion of a dedicated medicines strategy within the Pae Ora (Healthy Futures) Act. The inclusion of this strategy, which was voted down by Labour but was welcomed by Pharmac, would have contributed towards addressing systemic inequities regarding rare disorder treatment access.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Issue 5 – Rare disorder medicines/drug access programme

Policy Question 1: Would your party instruct Pharmac to establish a separate assessment pathway for rare disorder medicines?

Labour	We made an election promise to conduct an independent review to look at how well Pharmac performs against its objectives, and whether those objectives need changing. We were proud to deliver that review. The review made several recommendations for Pharmac to better serve the rare disorders community, like having Pharmac’s Rare Disorders Advisory Committee meet often enough to consider horizon scanning and increasing transparency of Pharmac’s exceptional circumstances decisionmaking process for rare disorders. It did not specifically recommend a specialist pathway. Pharmac has said that it is now prioritizing engagement with its Rare Disorders Specialist Advisory Committee, committed to clarifying public information about its exceptional circumstances decisions and is now working with HQSC to allow for better consumer input into Pharmac’s work. We acted on the Pharmac review by instructing the Ministry of Health to develop the rare disorders strategy. We acknowledge that the market of highly specialized medicines that can help with some rare disorders has expanded in recent decades and that their high cost can make access difficult. The rare disorders strategy will address access to novel high-cost medicines for people with rare disorders. Once it is released, we will work with Pharmac to continue increasing access to effective medicines for New Zealanders with rare disorders. We’ve also made historic progress in increasing access to medicines by boosting the funding of the Combined Pharmaceutical budget by 51 percent since 2017. This has enabled Pharmac to fund medicines such as risdiplam and nusinersen (spinal muscular atrophy), as well as Trikafta for cystic fibrosis.
National	We are unable to comment or reveal manifesto items at this time.
Green Party	The Green Party is committed to the recommendations in the 2022 Pharmac Review Final Report, including those on the funding of rare disorder medicines. Recommendations on rare disorders medicines includes: Ensuring Pharmac’s Rare Disorders Advisory Committee meets frequently enough to undertake and/or consider horizon scanning – support the chair of the Rare Disorders Advisory Committee to ensure the right expertise is invited to provide advice on applications where there is currently no member of the committee covering that specialism. This may mean involving experts from other countries Involve the lived experience of patients with rare disorders in the decision-making process Extend the role of the Rare Disorders Advisory Committee to monitor and review pharmaceuticals once funded, to gauge their efficacy. This could be achieved through the development of a register for funded medicines. Become more transparent about the decision on applications for rare disorders, including under exceptional circumstances. Formalise the discretion currently applied within the exceptional circumstances process to minimise barriers to access for rare disorders, including greater clinical oversight.
Act	ACT is developing its health policies, and these will be released closer to the election.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Policy Question 2: Would your party allocate funding to meet the estimated $400 million shortfall needed annually for Pharmac to clear the Options for Investment list of approved medicines?

Labour	We will continue to increase investment in the Combined Pharmaceutical Budget. Since coming into Government, we have consistently invested in the medicines budget. Last year, we announced the biggest-ever increase to Pharmac’s medicines budget, $191 million over two years. This enables Pharmac to buy more medicines for more New Zealanders. Pharmac has recently funded drugs used to treat rare disorders. This includes risdiplam and nusinersen (spinal muscular atrophy), as well as Trikafta for cystic fibrosis. As we have not yet confirmed our election manifesto, we are unable to offer funding commitments relating to the election at this time. However, we are proud of Labour’s track record in increasing the Combined Pharmaceutical budget while we have been in government and the resulting increase in access to medicines for rare disorders.
National	We are unable to comment or reveal manifesto items at this time.
Green Party	Yes, the Green Party will increase funding for PHARMAC so that it can invest in new medicines and health care devices to enhance treatment outcomes and quality of life.
Act	ACT has long called for a review of Pharmac's funding and funding formula.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Policy Question 3: What is your position on Pharmac being brought under the authority of Te Whatu Ora?

Labour	This is not something we are considering currently. The Independent Pharmac Review noted that the fact Phamac is independent of Ministers allows it to better negotiate prices because it is not swayed by campaigns or political pressure.
National	PHARMAC continues to need oversight and monitoring instead of being an isolated entity unto itself. National will have very clear lines of accountabilities and expectations for PHARMAC be that inside or outside Health NZ
Green Party	While the Green Party supports Pharmac remaining a sperate government agency, we believe Pharmac must engage more with other parts of the health system and the public - particularly Māori. We agree with the recommendations in the 2022 Pharmac review that the Pae Ora (Healthy Futures) Bill should ensure that Pharmac’s best health outcomes objective includes securing equitable health outcomes for Māori and other populations. In seeking the best health and equity outcomes, Pharmac should work collaboratively with the Ministry, Health NZ, and the Māori Health Authority.
Act	ACT supports Pharmac remaining independent from any political influence and control.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Issue 6 – Research

Policy Question: Would your party commit to ring-fencing funding specifically for rare disorder research?

Labour	Decisions on health research funding are made by the Health Research Council and expert panels. The rare disorders strategy will address how we can attain more consistent standards of care, and access to nationwide and International clinical expertise for people with rare disorders. After the strategy is released, we will work with the relevant agencies on its elements relating to research into rare disorders.
National	National supports contestable research funding based on expert guided advice by the Health Research Council.
Green Party	The Green Party will invest in and ensure timely and equitable access to the most up-to-date health research, procedures, medicines, diagnostics, vaccines, and other health technologies, and will explore funding specifically for rare disorder research.
Act	ACT is developing its health policies, and these will be released closer to the election.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Issue 7 – National rare disorder database

Policy Question: Would your party direct Manatū Hauora - Ministry of Health to establish a system to collect data on rare disorders?

Labour	Yes. A key element of the rare disorders strategy will be to provide the high-quality information that is needed by people, practitioners and organisations to support better outcomes for people with rare disorders. We recognise that in many countries a specialised registry is used to do this. Once the rare disorders strategy has been completed, we would look to work with the Ministry of Health and other relevant stakeholders to determine how we can best gather high-quality data on rare disorders.
National	National supports granular coding of health conditions that further inform management and resources
Green Party	Yes - we know that that there is low quantity data available on rare disorders in New Zealand, and that this impacts patient and treatment outcomes. The Green Party will look at ways to improve data collection on rare disorders within our health system.
Act	ACT is developing its health policies, and these will be released closer to the election.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.

Issue 8 – Workforce development

Policy Question: How will your party increase staff capability within medical and allied health with respect to rare disorders?

Labour	We want everyone who accesses the health system to feel listened to and have their concerns heard. We acknowledge that the specialized nature of many rare disorders may lead to a more complicated path in the health system to get diagnosis and treatment. We encourage ongoing professional development for our health workforce, so they can better understand and treat people and whānau with rare disorders. With the health system becoming more unified and consistent due to the health reforms, we believe there is an opportunity for greater collaboration and information sharing to help inform our workforce to enable the best outcomes for whānau with rare disorders. As part of the rare disorders strategy, the Ministry of Health has consulted with the rare disorders community (including RDNZ), which has provided an opportunity for those with rare disorders to share lived experience around the health workforce and the health system more generally. The strategy will be informed by these perspectives, and we will work with the relevant agencies to equip our health workforce to provide equitable outcomes for people and whānau with rare disorders. We also acknowledge RDNZ’s ongoing work to equip clinicians with advice on rare disorders.
National	Medical and nursing colleges and councils are responsible for setting curriculum and continuing medical education. Before one can impact these areas there has to be health professionals. National has already announced its bonded nursing program and will have more to say on the subject of health workforce.
Green Party	The Green Party will increase entrants into health professions, the retention of health practitioners and practitioners in the workforce, and placements for on-the-job learning to boost the health professional workforce, including for rare disorders. We will ensure fair wages, pay parity, a reasonable workload and conditions that support the wellbeing of health workers. We’ll also fix our immigration system to ensure migrant healthcare workers have realistic pathways to residency and enable them to reunite with their families.
Act	ACT has committed to increasing General Practitioner capitation payments by 13 percent. Currently the largest barrier to New Zealanders accessing the most basic healthcare is getting an appointment. A funding increase of 13 percent will give GP practices the capability to provide the equivalent of 2.5 million extra subsidised GP visits to New Zealanders, ensuring that New Zealanders with rare disorders can access quality primary care when and where they need it.
Te Pāti Māori	As yet, no response.
NZ First	As yet, no response.