Written by Jake Pond, associate director at Oxygen Strategy

The imminent general election is set to mark a significant shift in the UK’s political landscape, signalling an almost inevitable conclusion to over 14 years of Conservative Party leadership. Current polling now predicts a strong Labour majority—a change that will undoubtedly have an enormous impact on the direction of national health policy.

Unsurprisingly, emerging party manifestos have largely focused on immediate “first order” health policy priorities and have looked to address “fundamental” system challenges such as an ever-growing patient backlog and the yet-to-be-sorted NHS industrial action. While it is incredibly important that these issues are resolved, and resolved as quickly as reasonably possible, it is also imperative that fixes here are not made entirely at the expense of priorities elsewhere in the health system. Rare diseases are a perfect example of this. Amidst a sea of competing policy noise, it is now vital that any new government does not overlook the rare disease community, or at worst, undo any hard-fought progress.

What rare disease policy development have we seen in recent years?

The past few years have seen incredible improvements in the recognition of rare diseases within national policy. The publication of the UK Rare Diseases Framework was a landmark moment for the rare disease community, highlighting a renewed government vision to improve the lives of those impacted by less common conditions.

The framework itself focuses on four main priorities: faster diagnosis, increased awareness amongst healthcare professionals, better coordination of care and improved access to specialist treatments and medicines. The subsequent nation-specific “Rare Disease Action Plans” have since provided a structured approach to tackling the unique challenges associated with rare conditions, while also allowing for policy implementation and progress to be meaningfully benchmarked year-on-year.

The development of these policies has in large part been driven and influenced by key rare disease organisations and advocates. These groups and individuals have worked tirelessly to represent the voices of those affected by rare diseases, ensuring that their needs are both better considered and represented at the national level. This collaborative, patient-centric approach has been instrumental in bringing about meaningful changes within the UK rare disease landscape and as such, is an essential “way of working” that must be preserved by any future government.

How do we ensure continuity and progress?

The UK rare disease community is already acutely aware that an upcoming change in government could stand to significantly disrupt rare disease policy continuity and development—at least in the short term. These prevailing uncertainties have led key rare disease organisations, such as Genetic Alliance UK, to actively campaign for the continued recognition of rare diseases as an important health system priority. Genetic Alliance’s aptly named “Manifesto for Rare Diseases” calls for just this—encouraging the next government to “take steps to build on the progress that has been made to date through initiatives such as the UK Rare Disease Framework” while also setting new ambitions to drive further improvements over the next five years.

As already emphasised above, listening to the voices of the patient community here is essential. Rare disease patients and advocates are often the true experts in their conditions, being able to provide unique and valuable insights that may otherwise be overlooked. The continued engagement with these experts and direct consideration of their recommendations is a necessary step to “getting it right” for future policy development.

So, where do the major parties stand on rare diseases?

As the election creeps closer and closer, it is becoming increasingly clear where the “big two” parties are beginning to land on their approaches to rare disease policy. While each manifesto addresses health and social care challenges to varying extents, there remain key differences in the level of detail and specificity provided.

The Conservative Party

As the incumbent government, the Conservative Party’s manifesto is the most granular in terms of specific policy actions. This also rings true for the party’s commitments to rare diseases. As of today, the Tories are the only party to specifically recommit to delivering on the Rare Disease Action Plans and taking forward an agenda to deliver against each of the overarching framework’s four priorities.

Tangentially, the party has also committed to supporting the UK’s “world-leading life sciences sector” and in doing so, drive research into new treatments, secure more commercial clinical trials and “remove bureaucratic obstacles to the use of new medicines”. While none of these commitments are necessarily specific to rare diseases, their implementation could broadly support the ambitions of the UK Rare Diseases Framework by driving potential improvements in access to specialist treatments and medicines.

The Labour Party

In frank terms, the Labour Party’s manifesto is the one that matters most to the rare disease community given today’s political climate. Unlike the Tories, Labour make no specific mention of rare diseases within their election manifesto. However, this does not mean the party has decided to leave patients by the wayside.

Within Labour’s “5 Missions For A Better Britain” and commitment to build “an NHS fit for the future”, the party outline their intent to both “put Britain at the front of the queue for new medicines” and better utilise “the explosion of innovation in health technology”, such as genomics, to support rare disease diagnoses. Labour’s “Prescription for Growth” also builds on these ideas, recognising the need for a comprehensive innovation and adoption strategy to harness the latest developments and improve outcomes for UK patents.

At their simplest, these proposals do not necessarily represent any radically new ideas, but they do provide reassurances that existing rare disease initiatives are likely to be preserved and built upon. The infrastructure already exists within the Department of Health and Social Care to meaningfully support and improve rare disease care and, as it stands, Labour is likely to make good use of it.

What’s next?

As the UK prepares for a near-certain change in government, a continued focus on health and social care is paramount. While addressing immediate challenges like healthcare backlogs and strikes is critical, it also remains important not to lose sight of the highly dynamic and quickly evolving rare disease landscape. The progress achieved to date through the UK Rare Diseases Framework and ongoing efforts of advocacy groups have now laid a strong foundation for future, forward-thinking policies in this area. By ensuring continuity and prioritising the needs of the rare disease community, the incoming government can continue to improve the lives of those affected by these conditions and make meaningful strides towards a more inclusive and effective healthcare system.

Labour now finds itself in pole position to build on this foundation and deliver more for everybody impacted by rare diseases within the UK.

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About the author

Jake is an associate director at Oxygen Strategy with an established expertise in rare diseases, advanced therapies and medicines access policy. Email Jake atjake@oxygenstrategy.com

Oxygen Strategy is a specialist healthcare public affairs consultancy. Find out more, atoxygenstrategy.com,or emailhello@oxygenstrategy.com

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