New view for future crew

Accounting for 15% of all blood cancers in the UK, multiple myeloma is a relapsing-remitting condition that necessitates lifelong treatment and care.

These factors place considerable demands on the healthcare system and have profound social and economic impacts on patients and their families. Many myeloma diagnoses occur among working-age adults, with rising numbers of people leaving work early due to ill health.

It is critical we consider ways to support those with long-term conditions like myeloma in staying employed while also addressing broader impacts on the NHS, the economy and individuals.

Recent research conducted by Johnson & Johnson (J&J) found that the annual cost of myeloma to the NHS in England is estimated at £209.2 million.

This staggering figure reflects the multifaceted nature of care required for the condition, spanning primary and secondary care, as well as inpatient and outpatient services.

In 2022-23 alone, hospital-related expenses for myeloma reached an estimated £130 million, driven by over 200,000 admissions. These figures underscore the strain on healthcare resources and emphasise the urgency for innovation in treatment approaches and care models.

A delayed diagnosis of myeloma not only leads to poorer outcomes for patients but also increases demand on the NHS.

Alarmingly, around one-third of myeloma patients are diagnosed through emergency routes, often after complications like spinal fractures or cord compression.

On average, it takes 163 days from the onset of symptoms to a proper diagnosis, with 25% of patients waiting more than a year to receive the correct diagnosis and 34% visiting their GP at least three times before being referred – twice the average for other cancers.

This delay not only worsens patient prognosis but also exacerbates the strain on healthcare resources.

Myeloma extends beyond inpatient care – it’s a condition that demands a complex network of outpatient services. Every year, patients spend thousands of days undergoing chemotherapy, radiotherapy, blood tests and stem cell transplants.

The scale of this is hard hitting: 35,000 days for chemotherapy alone and 47,000 for other treatments, costing the NHS more than £140 million annually.

The burden stretches past this too – common myeloma-related comorbidities such as chronic kidney disease, sepsis and pneumonia result in over 75,000 hospital admissions and cost the NHS more than £67 million in the past five years.

This highlights a critical challenge for the healthcare system: we urgently need to innovate, not only to ease the strain on resources but also to ensure faster diagnoses and better support for patients navigating this difficult journey.

The economic burden of myeloma extends beyond direct healthcare costs. People with myeloma of working age collectively lose an estimated 1.3 million working days each year, leading to productivity losses that affect not only individuals but also the broader economy.

Caregivers are impacted as well, with an additional 25,500 working days lost annually to support loved ones – bringing the total loss of productivity by both people with the condition and their caregivers to over £34 million each year.

And it’s not just about the numbers – myeloma disrupts lives on a deeply personal level. According to NHS England’s Cancer Quality of Life survey, nearly 16% of patients report severe difficulties with work, while more than half struggle with moderate work-related challenges.

Leisure activities, another key aspect of well-being, are often compromised too. These statistics underscore a pressing need for more holistic support systems that address not just medical care but also the broader quality-of-life challenges faced by patients and their families.

There is an urgent need for targeted support for people with myeloma and their caregivers that enables people to sustain a productive, fulfilling life beyond their diagnosis.

Myeloma’s physical effects are compounded by its emotional toll, which is increased with a delay in diagnosis.

Patients experience a relapse-remitting cycle that creates uncertainty and isolation, often making it difficult to plan for the future or return to work consistently.

At a Parliamentary roundtable launching the findings of J&J’s economic research, we heard directly from someone diagnosed at a working age.

He shared how his life was turned upside down, forcing him to re-evaluate career aspirations, adapt his lifestyle and manage the profound ripple effects of his diagnosis on his family.

Hearing these personal stories brings to light the deeply human impact of this condition in a way that statistics alone cannot.

Delayed diagnosis only compounds these challenges. Research conducted by Myeloma UK found that 72% of people with a delayed diagnosis reported that myeloma had a high or moderate impact on their quality of life through factors such as poor mental health, reduced mobility and kidney complications.

For these individuals, myeloma is far more than a medical condition – it’s a life-altering challenge that affects nearly every aspect of daily living.

It’s critical that care pathways in England evolve to provide not only effective medical solutions but also the emotional support and clarity patients need to navigate their journey.

By empowering patients with better resources and options, we can help them reclaim more of their lives, even in the face of a complex and demanding condition.

There are clear gaps in the myeloma pathway that are keeping people with the condition out of work and preventing them from living longer, fuller lives.

With upcoming Government initiatives such as the 10-Year Plan for Health and the new Cancer Strategy, it is important that blood cancers are on the agenda. Key issues facing the myeloma pathway – such as delayed diagnosis, workforce shortages and limited access to innovative treatments – should be specifically addressed.

Myeloma presents a clear opportunity to put into action the pillars of the 10-Year Plan for Health: shifting from hospital to community; analogue to digital and sickness to prevention.

Expanding community-based care for myeloma could significantly ease the strain on the healthcare system by building stronger, more accessible care networks for patients.

By bringing care closer to home, this approach not only supports better health outcomes but also helps address practical concerns like the loss of working days, enabling patients and caregivers to maintain greater stability in their lives.

As myeloma diagnoses continue to rise, so too does the urgency for a coordinated, innovative response. This begs the question, ‘what can industry do to support these reforms?’.

From our perspective, we have a clear opportunity to provide input on how to best reshape the care pathway, support initiatives to reduce the strain on healthcare resources, and further invest in research and development of innovative treatments to enable patients to lead more fulfilling lives.

It is imperative that we move beyond incremental improvements and adopt an approach that reflects the complex, often lifelong nature of myeloma.

Through collaboration, commitment and targeted policy change, we can all play a part in building a more sustainable and patient-centred future for those living with myeloma.

Dr John Fleming is Johnson & Johnson Innovative Medicine UK’s Country Medical Director.
Go to innovativemedicine.jnj.com/uk