Cell and Gene Therapies: Skills Provision

Liz Twist Excerpts

Thursday 7th September 2023 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

What a coincidence to have one debate about rare conditions followed by another. I am pleased to have secured this debate on skills provision for new cell and gene therapies.

The emergence of new cell and gene therapies, sometimes known as advanced therapies, offers real hope for patients with rare and genetic conditions. Many of these patients have so far faced limited treatment options and endured great challenges associated with managing their conditions long term. However, using the power of human biology, cell and gene therapies can address the root causes of diseases rather than just their symptoms, preventing disease progression and even saving lives. In many cases, a single one-time treatment can be all that is needed to alleviate a disease. Not only do these therapies provide relief for patients from the need for lifelong treatments; they could provide long-term cost offsets by freeing up NHS resources and enabling patients and their carers to be economically active.

However, it is not only rare disease patients who stand to benefit from cell and gene therapies. As research continues, we could see a world where cancer patients can be effectively cured of their disease and where type 1 diabetes is addressed by enabling the body to once again produce and regulate insulin.

These developments are huge for patients. That is a point that I want to stress, because in all these debates we need to remember who is at the centre of this new technology: it is people, living their lives in the best way that they can, and wanting the best life and the best treatment possible. That requires us to recognise that research and healthcare have not always been equitable and that patient decisions to participate in clinical trials or receive treatments may be more complex than for conventional medicines, because of the very irreversible, one-off nature that makes them so transformative. That is why ongoing patient and public involvement is so important, to build better relationships between researchers and patients and empower patients to make informed choices.

I want to talk now about two of my constituents, Freddie and Louis. There are many stories about the transformative effects of new gene therapies, but I will speak about the story of these two young brothers. Following a long struggle by the boys’ parents, older brother Freddie was diagnosed at 12 months with spinal muscular atrophy, a rare, genetic neuromuscular condition that causes progressive muscle wasting, as the Minister will know.

Freddie is a happy, social and determined boy, and he has hugely benefited from access to the lifelong treatment nusinersen, which his family say has saved his life and independence. However, they have faced challenges and costs in securing the equipment needed to allow Freddie to have the freedom he deserves, including fundraising for an all-terrain wheelchair that allows him to take part in as many activities as possible with his peers.

As Freddie was diagnosed with SMA, his younger brother Louis was screened for SMA and diagnosed before birth. As a result, Louis became the youngest pre-symptomatic baby in the UK with SMA type 2 to receive Zolgensma, a groundbreaking new gene therapy, at just 18 days old. More than a year on from getting that treatment, Louis has no signs or symptoms of SMA and is expected to continue to grow and live his life free from the disease.

As SMA is currently not screened for in the UK’s newborn screening programme, Louis would not have received such early intervention had it not been for Freddie’s diagnosis. As cell and gene therapies tend to slow down or prevent disease progression, early intervention can be absolutely vital. For more patients to benefit, we need not only a more expansive newborn screening programme, but a cell and gene therapy sector equipped for timely development and delivery of new treatments, many of which are becoming possible and available.

At this stage, I acknowledge the work of LifeArc, which has published a report on the future possibilities for cell and gene therapies in the UK. The report highlights what we need to do to make the most of the opportunities that we have.

So far, the timely development and delivery of new treatments is not guaranteed. The very nature of cell and gene therapies means that they are unlike standard off-the-shelf medicines. Specific infrastructure is needed to deliver them, from specialised manufacturing sites to specialised equipment in hospitals, as well as a specialised workforce, which is the focus of this debate.

The number of cell and gene therapies coming to market is expected to rise significantly in the coming years, but the current picture suggests that staff shortages could hinder progress. There is therefore an urgent need to prioritise skills provision. We need a significant expansion of the cell and gene therapy workforce. Studies by the cell and gene therapy catapult show that the cell and gene therapy and bioprocessing industries in the UK currently employ nearly 7,000 people, and that the number of highly skilled roles required is expected to more than double by 2026. However, there are significant barriers to achieving that: the highly specialised and complex nature of advanced therapies makes the sector particularly vulnerable to skills gaps. What we need is a UK-wide strategy and plan to develop a workforce that possesses the relevant skills that are desperately needed by the industry.

One hurdle is the limited public awareness, outside the academic world, of cell and gene therapies. Improving the exposure of career pathways will be vital, especially for potential technicians and other staff who will have less familiarity in the field. Proactive engagement with students as early as primary school could empower them to pursue careers in cell and gene therapy. That could include bringing scientists and industry experts into classrooms, or a focus on understanding rare conditions, cancer and the transformative effects that treatments can have on patients’ lives. Heightened public awareness of the lived experiences of rare disease patients, and of the transformative potential of cell and gene therapies, should also feed through to higher education, but as it is very much a specialist field, science, technology, engineering and maths students need guidance on how to specialise. They also need to be equipped with the basic lab skills and experience needed to get started in the workforce, which is a particularly current issue for the industry.

However, the industry will not be able to rely solely on new graduates. Instead, it will need to draw on workers in declining industries, such as oil and gas production, and attract people who have not been to university. The Government need to support the CGT industry to access all those potential pools of recruitment by promoting the visibility of the cell and gene therapy field and investing in training and development programmes. A first port of call, for example, could be working with stakeholders to create a central platform for job, training and education opportunities in the sector, so that those interested in the industry need only go to one place to find the information they need.

Most critically, the Government need to play an active role in equipping candidates with the skills they need, working with academia and industry to create a national strategy for placements and internships. For non-graduates or those changing careers, we should be taking advantage of the cell and gene therapy catapult’s existing advanced therapies apprenticeship community and advanced therapies skills training network. With ringfenced funding and the convening power of Government, the Government could help to expand those schemes into a national training framework, to develop a sustainable workforce pipeline. Training bursaries may also need to be provided for those changing careers, so that adult workers can learn new skills without losing income.

At the moment, training academies run by well-funded individual companies risk undermining collective training efforts, fragmenting training standards and depleting the workforce pool for small and medium-sized enterprises. To tackle that, we need new forms of accreditation that can guarantee consistent and quality practice. We should also find ways to incentivise companies to share their knowledge to the benefit of the whole sector.

Of course, many of these issues relate to the development and manufacturing of cell and gene therapies, but if patients are to benefit from these new treatments, NHS staff must also be trained to deliver them, or we could end up in a situation where treatments are available but patients cannot access them. There is also a risk of geographic and socioeconomic inequities in access to advanced therapies. Without proper planning and preparation to ensure health service readiness, some patients could be disadvantaged based on where they live. That is why we need a national vision to ensure an equitable, standardised approach to the expansion of the cell and gene therapy field and the training of NHS staff. Accreditation passports, a central learning hub and provision of flexible, blended training opportunities could all come into play.

Geographic considerations are important more broadly within the sector and life sciences as a whole. While much of the UK’s life science industry is concentrated in the golden triangle, the cell and gene therapy industry is generally better distributed. My local enterprise partnership in the north-east has identified cell and gene therapy as a key area of growth for the future, and the sector could offer jobs for people with various levels of qualifications across the region. We have to make sure that we are capturing the talents and experiences of people across the UK, not just in London, Oxford and Cambridge.

We also need to ensure that there are research facilities looking at rare diseases right across the UK. Newcastle is a key centre, and the north-east has an important part to play; I would like to stress that. The cell and gene therapy sector must work with local authorities to develop more locally responsive recruitment and regional skills pipelines, with greater information sharing between manufacturers and treatment centres to ensure that patient demand is met.

There are a lot of considerations here, but first and foremost what we need is a strategy—a strategy that will not only plan for the expansion of the sector but do so in a manner that puts patient need and care at the heart of its goals, because that is what this is all about. It is important that patients are listened to in all this and that plans are put in place not only to develop and deploy treatments but to ensure that patients are supported prior to, during and after receiving new therapies. As we upskill people to get involved in this space, we need to imbue them with an intimate understanding of the lives of the people they are working to treat, so that they might best serve their needs and understand their priorities.

I hope that the Minister can today provide assurances that his Government plan on delivering a detailed strategy to support the expansion of the cell and gene therapy sector, to allow patients equitable access to treatments that stand to transform their lives. We have so many opportunities now, and we need to make the most of them for those who are affected by rare conditions and rare diseases.