National

Has not yet provided a response.

Labour

In Government, Labour initiated the Rare Disorders Strategy and wants to see it fully implemented. Under National, it has taken two years for an
implementation plan to be made, we acknowledge that throughout this time the Rare Disorders community has been advocating for greater action on
implementation.
Labour has been actively involved in the cross-party parliamentary group on rare and undiagnosed disorders. We will uphold directive that ensure work
on the Strategy’s implementation progresses.

ACT

Yes. ACT was instrumental in ensuring that progress was made on the implementation of the Strategy. The Hon David Seymour included reference to the Rare Disorders Strategy in all Letters of Expectation he issued to Pharmac. ACT also helped establish the Rare Disorders Cross-Parliamentary Group.

Green

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 implementation of a rare disorders strategy in Aotearoa.

NZ First

Yes.
New Zealand First supports the continued implementation of Aotearoa New Zealand's Rare Disorders Strategy and believes that strategies
must result in practical improvements for patients and families.
Our approach to health is guided by the principle that health should be treated as an investment in New Zealanders rather than simply as a
balance-sheet cost. People living with rare disorders should not be left behind because their condition affects a relatively small number of
people.

Te Pati Māori

Te Pāti Māori will uphold the Minister’s directives to ensure work progresses on the implementation of the Rare Disorders Strategy. We care deeply about achieving health equity for all people in Aotearoa.

National

Has not yet provided a response.

Labour

Labour are champions for the National Clinical Network and that is why we set it up. Strengthening clinical networks, so that where someone lives does
not determine the quality of care they receive, sits squarely within our values. We will be announcing more policies over the coming months, guided by
our belief that access to good health care is the right of every New Zealander.

ACT

ACT would commit to having Health New Zealand fund any rare disorder clinical reference group the same way as other clinical network groups. Health New Zealand can do this from current funding.

Green

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 Clinical Network will achieve this.

NZ First

New Zealand First supports ensuring that rare disorders have appropriate clinical leadership and national coordination.
Given the complexity and relatively small patient populations involved, a coordinated national approach can improve clinical expertise,
consistency and access to specialist knowledge.
We support the establishment of a National Clinical Network for Rare Disorders with status and funding equivalent to other key networks
(like diabetes). New Zealand First opposes administrative health bureaucracy but strongly supports frontline clinical leadership to ensure equal
access based on actual need.

Te Pati Māori

Te Pāti Māori will commit funding towards a National Clinical Network for Rare Disorders as part of phase one of the implementation of the Rare Disorders Strategy.

National

Has not yet provided a response.

Labour

The shortage of geneticists and genetic counsellors, and the absence of any New Zealand training programme for genetic counsellors is a real constraint.
Labour's values commit us to comprehensive, long-term health workforce planning and to moving towards self-sufficiency rather than relying on
overseas recruitment, and that thinking applies to the genetics workforce as much as anywhere else in the system.

ACT

ACT believes that the Ministry of Health should be working with all health stakeholders on a 10-year workforce plan. This would include what roles and training is required in relation to genetics and genomics in New Zealand. This plan, along with the Health New Zealand Genomics Strategy, would help inform how best to resource the Genetic Health Service in the future.

Green

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.

NZ First

We support increasing funding for Genetic Health Services. To resolve the severe workforce shortage, we will prioritize health services sector
immigration in the short term, and establish dedicated domestic training pathways in the long term, in line with our principle of training and employing
our own people.

Te Pati Māori

Te Pāti Māori will commit to an increase in funding for Genetic Health Services with a specific focus on creating training programmes for genetic counsellors in Aotearoa.

National

Has not yet provided a response.

Labour

New Zealand is behind comparable countries in genomics, and it’s important we close that gap. Labour supports evidence-based strategies that are
properly resourced and deliver results for patients.
We will be announcing more policies over the coming months, guided by our belief that access to good health care is the right of every New Zealander.

ACT

ACT has championed a focus on genomics during this term of Government. This has included supporting the establishment of the Canterbury-led genomics pilot. We would commit to working with the Ministry of Health, Health New Zealand and the non-government sector to further advance genomics for improved patient outcomes.

Green

NZ First

Yes, in principle.
We will prioritize finalising and funding the implementation of Health NZ's Genomics Strategy. This aligns with our commitment to adopt advanced digital technology in harder-to-staff areas and liberalize genetic engineering laws while protecting human health.

Te Pati Māori

Te Pāti Māori will finalise Health NZ | Te Whatu Ora’s Genomics Strategy and commit funding towards its implementation.

National

Has not yet provided a response.

Labour

People shouldn’t have to weigh up whether seeking a diagnosis will cost them access to insurance, and where that fear deters testing it has the potential
to harm both the individual and the health system.
Labour's values commit us to laws that are fair and non-discriminatory. In Government, we would aim to seek further advice on this.

ACT

ACT has committed to moving forward the consultation on the regulations required to ban genetic discrimination. See https://www.act.org.nz/news/act-backs-consultation-on-genetic-discrimination

Green

The Green Party are open to exploring this if in Government.

NZ First

New Zealand First recognises the legitimate concerns surrounding genetic discrimination and would support examining legislative protections to ensure New Zealanders are not unfairly disadvantaged for accessing genetic testing or medical information. We believe New Zealanders should be able to seek medical diagnosis without unreasonable fear that genetic information will subsequently be
used against them.
Any legislative approach should carefully balance protection from unfair discrimination, privacy rights and legitimate insurance underwriting
requirements. NZ First would be prepared to consider stronger statutory protections following appropriate policy and legislative analysis.

Te Pati Māori

Te Pāti Māori will support a total legislative ban on genetic discrimination in insurance policies. No one should be discriminated against on the basis of their genetics.

National

Has not yet provided a response.

Labour

We are looking for and support opportunities for technology to release more of our skilled clinicians time to care for patients
Our view is that adoption in health settings should be evidence-led. New tools need to be clinically validated in a New Zealand context, they need to close
equity gaps rather than widen them, patient privacy and data sovereignty must be protected, and clinicians must remain accountable for decisions about
a person's care.

Labour's values are clear that personal information and privacy must be protected and upheld as the public engage more with digitised public services,
and that principle applies particularly with health data.

ACT

There has not been a substantial improvement in health productivity in New Zealand for many years. New technologies, including AI, have the potential to address this issue. ACT would continue to put in place pathways for the quicker adoption of new medical technologies into our health system. Over the current term of Government we have started this work by delivering MedSafe’s Expedited Approval Pathway and Pharmac process reforms.

Green

We believe AI as a still emerging technology could have a role in the health system to improve diagnostics and healthcare services, but with human oversight and appropriate safeguards in place. We also want to ensure privacy remains a core priority with any use of these services, and where possible, data being held in Aotearoa and not offshore where they are subject to oversight from other Governments.

NZ First

New Zealand First supports the responsible adoption of technology, including artificial intelligence, where it demonstrably improves outcomes
for patients and strengthens the efficiency of public services.
In the past, we have committed to investing in New Generation Rapid Diagnostics to reduce laboratory turnaround times from days to under
35 minutes, and we support funding new technology within primary care practices to facilitate virtual and proactive clinical care. However, technology should support, not replace clinical judgement. Its use must be subject to appropriate safeguards, human oversight, patient privacy, data security and accountability. New Zealand First supports innovation that delivers practical benefits for New Zealanders
while ensuring that sensitive health information is properly protected.

Te Pati Māori

Te Pāti Māori will explore the adoption of new technologies to improve diagnostics and health care services. We will ensure that all new technologies uphold data sovereignty and Te Tiriti o Waitangi.

National

Has not yet provided a response.

Labour

National consistency in clinical pathways was one of the central benefits sought from the health reforms, and it is a benefit that should be realised for
people with rare disorders as well.
We will be announcing more policies over the coming months, guided by our belief that access to good health care is the right of every New Zealander.

ACT

Yes. Health New Zealand should be clear in its implementation of the Rare Disorders Strategy what funding it is allocating, and the programmes or pathways it supports.

Green

Yes.

NZ First

Yes. New Zealand First supports the implementation of practical and coordinated clinical pathways for rare disorders. People should not be left navigating a fragmented health system simply because their condition is uncommon. Clear guidelines and pathways can assist GPs, specialists and other health professionals to recognise potential rare disorders, access specialist advice and provide more consistent long-term care.

Te Pati Māori

We are committed to ensuring that all people in Aotearoa can access the health care they need and deserve. We will ensure that Health NZ allocates funding towards a more effective Health Pathway process for rare disorders in Aotearoa.

National

Has not yet provided a response.

Labour

While the Labour Party is yet to release its policies for disability issues, we are and remain deeply committed to governing the disability and social
support system in a manner that honours Te Tiriti o Waitangi, the United Nations Convention on the Rights of Persons with Disabilities, and the principles
that underpin Enabling Good Lives. This will be the foundation of any policy we implement in order to address inequities in the system, including for
people living with rare disorders.

ACT

ACT would be happy to work with the rare disorders community on the specific issues it is encountering and how these might be addressed.

Green

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.

NZ First

Under Principle 8 of our party, the welfare state must serve as an umbrella for genuine need.
New Zealand First believes that the welfare and support system must respond to genuine need, rather than relying on unnecessarily rigid
administrative categories that leave people with significant disabilities unsupported.
We will address systemic inequities by shifting assessments from rigid diagnostic checklists to functional-need criteria, reviewing the Child Disability Allowance, and re-establishing Workbridge as the leading employment agency for disabled Kiwis.

Te Pati Māori

Te Pāti Māori will widen the criteria to access disability support services so that people with rare disorders are not discriminated against.

National

Has not yet provided a response.

Labour

The independent review of Pharmac found that the current model contributes to inequitable outcomes for people with rare disorders. We are concerned
that Pharmac’s assessment pathways and factors for consideration don’t have the right balance. The processes for rare disorders and vaccines are areas
where we are most concerned. Labour would seek to improve these in Government.

ACT

ACT would continue the work requested by Minister Seymour of Pharmac in his Letters of Expectation. This includes looking at fit-for-purpose assessment pathways and a commitment to supporting the Rare Disorders Strategy.

Green

The Green Party are committed to increasing funding for Pharmac so that it can invest in new medicines and health care devices to enhance treatment outcomes and quality of life, including Rare Disorders, implementing recommendations from the 2022 and 2025 Pharmac reviews, including making any changes needed to assessment pathways.

NZ First

NZ First's established medicines policy has specifically recognised the need to improve access for people with rare disorders. At the 2023
election, NZ First proposed substantially increasing the Pharmac budget, funding medicines on waiting lists and establishing a $100 million rapid-access scheme for innovative medicines, particularly for rare disorders. NZ First recognises that conventional pharmaceutical assessment approaches can create difficulties for medicines treating very small patient
populations. Rare disorders often involve limited clinical trial data and high per-patient costs, requiring an assessment approach capable of
properly considering the particular circumstances involved.
We note that Pharmac has already taken steps to improve its rare-disorders pathway by aligning its definition of a rare disorder with the
national Strategy. NZ First would support further improvements where evidence demonstrates that the current arrangements continue to
disadvantage patients with rare disorders.

Te Pati Māori

We are aware that the one-size-fits-all approach fails many New Zealanders, including Māori. We will instruct Pharmac to establish a separate assessment pathway for rare disorder medicines.

National

Has not yet provided a response.

Labour

We would want to be confident that any change genuinely widens the benefits taken into account without weakening Pharmac's independence or its
ability to negotiate, which has served New Zealanders well. That is a balance worth getting right rather than rushing.

ACT

ACT in Government did ask Pharmac to look at its statutory objective. However due to time constraints it was not possible to make any legislative changes. ACT remains willing to consider this further in the future.

Green

The Green Party would consider changing the statutory objectives to enhance outcomes for those underserved by Pharmac, including those with rare disorders.

NZ First

NZ First supports a Pharmac system that remains rigorous, evidence-based and accountable while recognising that a purely one-size-fits-all approach may not always deliver equitable outcomes for small patient populations.
In the 2023 Coalition Agreement, we successfully negotiated to update Pharmac's decision-making model to incorporate the "patient's voice"
and increase funding every year.

Te Pati Māori

We will change the statutory objectives for Pharmac’s factors for consideration as part of establishing a separate assessment pathway.

National

Has not yet provided a response.

Labour

Any change to the CPB's share of health and disability expenditure would need to be weighed against other pressures on the health budget and against
Treasury and Pharmac advice. We will be announcing more policies over the coming months, guided by our belief that access to good health care is the
right of every New Zealander.

ACT

ACT has released its Medicines Funding Policy which commits to closing the gap with Australia in relation to medicines funding. New Zealand currently spends just 4.9 per cent of its health budget on medicines. Australia spends 12.2 per cent, while the OECD average is 13.3 per cent. Specifically, we propose increasing the percentage of the health budget that is spent on medicines by one percentage point each year, closing the gap with Australia by 2033.

The full policy is available here: https://www.act.org.nz/news/act-sets-achievable-path-to-close-medicines-gap-with-australia

Green

The Green Party are committed to increasing funding for Pharmac so that it can invest in new medicines and health care devices to enhance treatment outcomes.

NZ First

New Zealand's under-investment in medicines (4.9% of health spend vs. 13.3% OECD average) is unsustainable
Our established policy has included doubling the Pharmac budget and increasing investment in publicly funded medicines to improve New
Zealand's ability to fund innovative treatments and clear medicines waiting lists. We believe expenditure on effective medicines should be considered alongside the wider costs of delayed or inadequate treatment. Appropriate investment in medicines can improve quality of life, reduce pressure on other health services and allow people to remain active and independent.
NZ First therefore supports increasing investment in the Combined Pharmaceutical Budget where this is necessary to improve access to clinically effective medicines and represents good value for New Zealanders.

Te Pati Māori

We have heard about the need to increase the Combined Pharmaceutical Budget from other stakeholders, including Medicines NZ. This is something that we support in order to improve health outcomes in Aotearoa.

National

Has not yet provided a response.

Labour

Labour's values commit us to promoting research and development as an integral part of a strong economy, and to research into what works best here in
New Zealand. For a country of our size, research partnership is how we get access to knowledge and to trials we could never generate alone. We
acknowledge that rare disorder research is a field where that would have an impact beyond just this community.

ACT

ACT would first seek to understand the current research funding directed to rare disorders.

Green

The Green Party are open to providing ring-fencing funding specifically for rare disorder research.

NZ First

Aligned with our commitment to clinical research and development, we support ring-fencing research funding for rare disorders to enable
international collaboration. This will be supported by our proposed $50 million new medicines industry development partnership programme
to match private R&D investment.

Te Pati Māori

We will commit to ring-fencing funding specifically for rare disorder research.

National

Has not yet provided a response.

Labour

Labour is supportive of common coding and interoperability standards across the system.

ACT

There has not been a substantial improvement in health productivity in New Zealand for many years. The better use of data and new technologies is one way to improve both patient outcomes and productivity. We would look at the integrations requested as part of Health New Zealand's data and digital strategy.

Green

The Green Party are committed to improving Patient Management Systems and reversing the cuts made to over 1800 roles at the Data and Digital directorate at Te Whatū Ora to support this.

NZ First

New Zealand First supports improving the interoperability and quality of health information systems.
We would support the adoption of common standards such as SNOMED-CT where this improves interoperability and patient care, provided
implementation is practical, secure and does not impose unnecessary costs or administrative burdens on health providers.

Te Pati Māori

Effective data collection is crucial for people living with rare disorders as well as the broader health system. We support introducing a requirement for Patient Management Systems to be capable of integrating SNOMED – CT or other key coding systems, so long as data sovereignty and Te Tiriti o Waitangi are upheld.

National

Has not yet provided a response.

Labour

Labour supports continuity in major system investments. Stopping and restarting digital health programmes between governments wastes money, can
leave digital systems exposed and often slows down delivery for patients.
Labour's values are clear that people must be able to engage with government services safely and that personal information and privacy must be
protected, so any framework would need to carry strong privacy safeguards and patient control alongside the technical requirements.

ACT

Yes. ACT would commit to seeing this delivered.

Green

NZ First

New Zealand First supports progressing health information systems that improve continuity and quality of care. The rollout must, however, be accompanied by strong privacy protections, cybersecurity safeguards and clear controls over access to sensitive
patient information.

Te Pati Māori

We support the roll out of the Shared Digital Health record as long as data sovereignty and Te Tiriti o Waitangi are upheld.

National

Has not yet provided a response.

Labour

A shared record that most systems do not feed into will not deliver the safety benefits it promises, so a clear framework makes sense.
Labour's values are clear that people must be able to engage with government services safely and that personal information and privacy must be
protected, so any framework would need to carry strong privacy safeguards and patient control alongside the technical requirements.

ACT

This work needs to be integrated into the delivery of a Shared Digital Health Record. Individual control of all health information and data needs to remain a key feature of our health system.

Green

The Green Party would consider this along with a regulatory framework for patient records that keeps New Zealanders’ data and privacy safe.

NZ First

Yes, but any framework should establish clear standards for interoperability, cybersecurity, patient privacy and accountability, while ensuring
implementation remains practical for primary care providers.

Te Pati Māori

We will work toward a regulatory framework for Patient Management Systems to transfer patient data to the Shared Digital Health Record.

National

Has not yet provided a response.

Labour

Labour supports the Rare Disorders Strategy and wants to see it implemented. Learning modules and curriculum content are identified under Priority 3 of the Strategy. We will uphold directives that ensure work on the Strategy’s implementation progresses.

ACT

ACT believes that the Ministry of Health should be working with all health stakeholders on a 10-year workforce plan. This would inform what learning modules are required to upskill the health workforce.

Green

NZ First

New Zealand First recognises that greater awareness among health professionals can contribute to earlier diagnosis, more appropriate referrals
and better ongoing care.
We would support practical education and learning modules on rare disorders as part of wider workforce development, particularly where
these resources can be delivered efficiently and integrated into existing professional education and training systems.

Te Pati Māori

We will commit resources to upskill the health workforce on rare disorders through learning modules.

National

Has not yet provided a response.

Labour

It is clear that demand for genetics is growing. We acknowledge that there is currently no domestic training pathway for genetic counsellors. Labour's
values commit us to working with the sector on comprehensive, long-term health workforce planning, and to moving towards self-sufficiency rather than
depending on recruiting clinicians trained elsewhere.
Any health workforce policies we announce will be guided by our commitment to a strong, adequately funded public health system that has the people it
needs to deliver.

ACT

ACT believes that the Ministry of Health should be working with all health stakeholders on a 10-year workforce plan. This would identify the potential further need of geneticists and genetics counsellors and a plan to deliver them could be developed.

Green

The Green Party are committed to undertaking improved workforce planning across the health system to ensure we have the doctors, nurses, dentists and specialists we need to serve our people. This would include specialist workforces such as geneticists and genetics counsellors.

NZ First

New Zealand should develop greater domestic capability in areas where shortages are contributing to delays in diagnosis and treatment. This
includes considering training pathways, workforce forecasting and measures to improve recruitment and retention.
We would support Health New Zealand and relevant agencies developing a clear workforce plan for geneticists and genetics counsellors based
on current and projected demand, including consideration of whether additional New Zealand-based training opportunities are required.

Te Pati Māori

We will use the increased funding for Genetic Health Services to develop a workforce plan to increase the number of geneticists and genetic counsellors.