A little more knowledge lights our way

Wales needs to be ready for the treatments coming over the hill says Richard Greville and Nesta Lloyd-Jones

What comes to mind when you think of the biggest unmet needs in modern medicine? Is it cancers and Alzheimer’s disease? Or, after the last year, is it infectious diseases and respiratory disorders? Or perhaps it’s the rare diseases that collectively affect thousands of people across Wales every day? 

New data, discussed by an international panel of experts with stakeholders across Wales recently, reveals that these disease areas are amongst the top priorities for researchers running global clinical trials for the medicines and vaccines of the future.

Even last year, and despite the challenge and disruption caused by the COVID-19 pandemic, around 5,000 commercially funded clinical trials were launched globally. With a quarter of these trials focussed on cancer, diseases with high societal impact dominate the pipeline, including those for Alzheimer’s disease, respiratory conditions, rare diseases, and ground-breaking cell and gene therapies.

Thomas Allvin of the European Federation of Pharmaceutical Industries and Associations (EFPIA) discussed their Pipeline Review, which paints this picture of a healthy innovation pipeline, focused on major unmet needs. Whilst he covered a wide cohort of disease areas in other sessions, when speaking to Members of the Senedd, in an event sponsored by Jack Sargeant MS, he chose to concentrate on one – Alzheimer’s.

According to Alzheimer’s Research UK, in the ten-years from 2010 to 2020, the number of people on the dementia register in Wales rose from 15,389 to 22,686^[1], an increase of over 32%. However, not everyone with dementia has a diagnosis. This can be for many reasons, including the difficulty of diagnosis in the early stages of the disease, its slow progression, and limited public awareness of the causes of dementia.

At present, medicines for Alzheimer’s can only treat the symptoms of the disease. The hope is that future treatments will be able to delay onset or progression which would be a significant step forward and would help patients live an independent life for longer. Whilst the NHS would undoubtedly benefit from delays to the high levels of healthcare need associated with severe Alzheimer’s, there could also be a reduction in reliance on social care and, most importantly, the army of family members who care for their loved ones.

As with most other innovations in patient care, when future Alzheimer’s therapies demonstrate clinical and cost effectiveness, they will be financed in Wales through the medicines budget held for hospital medicines. However, the greatest value would be realised elsewhere, in social care for example. This causes a budgeting conflict and policymakers will need to ensure that access to these innovative therapies is not compromised due to one budget needing to increase, whilst other budgets across Government benefit.

Thomas’ message was clear; Wales needs to be ready for the treatments coming over the hill. Current delays in Alzheimer’s diagnosis will need to be addressed, not least the paucity of available testing, such as neuroimaging and lumbar puncture. New developments in diagnostics, like gene testing, will be just one important part of this. With recent clinical developments giving hope that these therapies might soon become available, it will be crucial to establish programmes that can screen and diagnose large numbers of patients with mild dementia quickly and accurately. This is where our recent experience with population wide testing and treating COVID-19 may provide useful, real-life experience.

In concluding the session at the Senedd, Rhys ab Owen MS – Chair of the Cross Party Group on Dementia – very appropriately quoted Yoda;

“In a dark place we find ourselves and a little more knowledge lights our way”.

Whilst the Pipeline Review inspires optimism about the overall trajectory of medical innovation, it comes with a caveat. Wales capacity to continue to develop and adopt the results of these research efforts requires fresh thinking about our research ecosystem and health and care infrastructure.

This thinking has started, with the governments of the four nations of the UK recently publishing a joint implementation plan for clinical research. It includes important goals for the future of clinical trials here in Wales, including:

• Embedding clinical research in the NHS to create a pro-research culture with resource and capacity allocated to deliver streamlined and high-quality clinical research.
• Improving equitable access to clinical research to make the involvement and participation in clinical research as easy as possible for patients and the public regardless of where they live, their gender or their ethnicity.
• Developing a sustainable and supported research workforce by offering rewarding opportunities to all healthcare and research staff of all professional backgrounds.

This UK wide implementation plan is strongly aligned to the 10-year strategy for NHS Wales, A Healthier Wales, which identifies the intent for individuals to be at the heart of transformation and modernisation of health and care services, and where research is fundamental and fully embedded in high quality care. While past innovations have improved patient outcomes, the coming wave of advances can go much further, and now is the moment for preparation, as well as celebration.

 

Dr Richard Greville is Director with responsibility for Wales and the Distribution & Supply Chain at The Association of the British Pharmaceutical Industry (ABPI); the trade association for companies who invest in discovering the medicines and vaccines of the future.

Nesta Lloyd-Jones is the Assistant Director of the Welsh NHS Confederation, the national membership body representing all the organisations making up the NHS in Wales. Nesta is responsible for public policy, public affairs, research, and effective political liaison on behalf of the Welsh NHS Confederation Members.

[1] https://www.dementiastatistics.org/statistics/diagnoses-in-the-uk/