Where do the political parties stand in 2023?

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.

• Complete National Rare Disorders Strategy
• Diagnosis
• Planned pathways for clinical care
• Access to disability and social supports
• Rare disorder medicines/drug access programme
• Research
• National rare disorder database
• Workforce development

Issue 1 – Complete National Rare Disorders Strategy

'A strategy for rare disorders needs to be developed', Minister of Health Andrew Little, June 2021.

Following the release of the independent Pharmac Review, the Government committed to implement the Review’s recommendation for the Ministry of Health to lead the development of a national rare disorders strategy to coordinate efforts to address and improve the lives of people with rare disorders.

Rare Disorders NZ has been having ongoing discussions with Manatū Hauora - the Ministry of Health, on the development of the national rare disorder strategy, which is expected to be completed in the first quarter of 2024. The next Government will be expected to continue this work and ensure its completion. 

Policy Question

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

Issue 2 – Diagnosis

Early and accurate diagnosis of a rare disorder is important to accessing a range of treatments and healthcare services, yet for many people living with a rare disorder their journey to diagnosis is often long and distressing, and can be costly – not only to the health system, but to their own health.

While New Zealand does screen for a fair number of conditions, and has a publicly funded network of genetic clinics, the country’s performance in rare disorders diagnosis is poor.

More funding for Genetic Health Services NZ would mean an increase in the number of qualified geneticists, to meet current and future demand for genetic testing and to stay up-to-date on technological developments in the fast-growing field of genomics. In the UK and Australia, the public health sector is giving greater attention to developments in genomics, which can be ground-breaking for rare disorder diagnostics. New Zealand should not fall further behind its peers in genetic testing.

Policy Question 1:

Will your party commit to an increase in funding for Genetic Health Services?

Policy Question2:

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

Issue 3 – Planned pathways for clinical care

People often report being lost in the health system, starting with a long pathway to diagnosis, or difficulty in accessing treatments and healthcare services, including challenges surrounding coordination of care. In our 2021 survey, almost half of respondents felt that organising care was difficult to manage. This included finding information on the disorder, understanding their rights and administrative procedures (48%) and finding the right professionals (58%).

In other countries this has been addressed by establishing Rare Disease Centres of Excellence that act as hubs of expertise and promote best practice, bringing together experts from multiple specialities to reduce the time to diagnosis and improve the availability and coordination of multi-specialty clinical care, improving medical and family education, creating safe and effective referral pathways, and driving innovation around new treatments, therapies, and research.

There is an opportunity to establish such centres by looking to international best practice, developing regional partnerships, and applying a Te Tiriti focus to such work.

Policy Question:

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

Issue 4 – Access to disability and social supports

There are systemic barriers to access disability and social support for many with rare disorders as they often do not meet criteria to access disability support services and funding despite having equivalent need to those that do.

In our 2021 survey, one-third of respondents with a rare disorder had not been submitted for an official health assessment to determine their level of disability. Of those assessed, four in ten felt their assigned percentage of disability was too low. Overall, people did not feel informed at all around the rights related to the consequences of their rare disorder (76%), relevant social services that can help them (73%) or financial help they could be entitled to (71%).

Indeed, our survey shows that the rare disorder population often falls through the gaps in our support systems and that people with undiagnosed and rare disorders, who have disabilities, are not recognised nor receive disability support services, often because the criteria are not designed with this population in mind.

Policy Question:

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

Issue 5 – Rare disorder medicines/drug access programme

In our 2021 survey, a third of respondents were having to undertake self-funding for at least some of their medicines, with a severe financial impact and related consequences to their quality of life. Although less than five percent of rare disorders have a specific treatment, having access to treatment can be lifechanging for people living with a rare disorder.

The independent review of Pharmac found the current model within which rare disorder medicines are assessed at Pharmac contributes to inequitable health outcomes for people living with a rare disorder. The current one-size-fits-all model under the pharmaceutical schedule does not work for low volume, high-cost medicines for rare disorders, and there are too many inconsistencies under the only other avenue – the exceptional circumstances framework.

Neither of these pathways provide reasonable assessment conditions for rare medicines to be approved. A separate assessment pathway for rare medicines with criteria separate to common conditions (as is implemented in Europe, Australia and Japan) is essential to ensure equitable access to medicines for those with rare disorders and where cost per person is not a constant barrier.

Policy Question 1:

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

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?

Policy Question 3:

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

Issue 6 – Research

Awareness of rare disorders among health professionals, health system leadership and government agencies is poor, with inadequate research funding a major cause. A funded national coordinated programme of research on rare disorders that included active participation by patients, carers and patient advocacy groups, would enable greater international collaboration and information sharing, and vastly improve how New Zealand manages rare disorders.

Policy Question:

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

Issue 7 – National rare disorder database

People living with a rare disorder are getting lost in our health system, because their conditions and their needs are not being captured. New Zealand has no official process for collecting data on rare disorders - no disorder specific 'tick boxes' for health professionals to select following diagnosis to register the prevalence and severity of the impact of these conditions. This means this sizeable population group and their needs are invisible and missing out on Government funding and resource allocation as a result.

Data collection is paramount for improving the lives of those living with rare disorders. An integrated and accessible database can aid health professionals in providing an accurate diagnosis and effective treatment to patients, and provide valuable information for researchers and policymakers.

Policy Question:

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

Issue 8 – Workforce development

Awareness and training of health professionals is essential to improving the lives of those living with rare disorders. From diagnosis to treatment, the level of awareness of rare disorders a health professional has is crucial to desired health outcomes. A lack of awareness of rare disorders often contributes to people feeling isolated and misunderstood, as well as to delays in diagnosis and treatment, potentially missing opportunities for early intervention and improved outcomes.

In our 2021 survey, over half of respondents found that health professionals were poorly prepared to support their families with the consequences of living with a rare disorder. The majority (66 percent) also said that health professionals have a poor degree of knowledge about rare disorders.

Policy Question:

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