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Axial spondyloarthritis sufferer shares his story
A charity claims delayed diagnosis of an arthritis condition that effects 1 in 200 young adults is costing the UK economy £18.7 billion a year.
The staggering figure comes from research led by the National Axial Spondyloarthritis Society (NASS) which found most sufferers of axial spondylarthritis (axial SpA) weight eight years to be diagnosed.
Axial SpA is a painful form of inflammatory arthritis that affects 1 in 200 UK adults. It starts young, with people often experiencing symptoms from their mid-teens to early 20s.
NASS said the financial cost to the economy was based on a patient who waits nearly a decade to be diagnosed likely losing around £187,000 based on average age and delays.
By driving down the average diagnosis time to one year, the NASS said the UK economy could save £167,000 per person.
The economic cost of £18.7bn was calculated as the average cost per individual per element (e.g. healthcare, out of pocket etc) each year multiplied by the estimated prevalence of axial SpA in the UK.
The sum is the 2022 UK adult population estimate (53.9m) multiplied by the axial SpA prevalence (0.018) multiplied by the undiagnosed proportion (83%) by the sum of average individual cost per year.
Axial SpA is an incurable and painful form of inflammatory arthritis, that affects the spine and joints. It causes extreme pain, exhaustion and fatigue. If left untreated it can lead to spinal fusion.
In ground-breaking economic modelling undertaken by the University of East Anglia shows that individuals pay a high price both in lost income, as full-time work becomes impossible, and in out-of-pocket health care costs, including paying for private health care appointments to look for answers.
Dr Dale Webb, CEO at NASS, told Express.co.uk: “These costs are startling and unnecessary. The cost of a delayed diagnosis is greater than the cost of earlier treatment and the economic argument for ending the delay is clear.
“The human cost of a delayed diagnosis is also great. As people wait many are locked out of work, education, and family and social lives. All this takes a significant toll on people’s mental health.
“Ending the delay would also slow down or stop the progression of axial SpA sooner, enabling more people to take a full role in life and avoid the worst outcomes such as spinal fusion.”
Shabir Aziz, from Sheffield, faced a 15-year delay to diagnosis. As a graduate he expected to establish a well-paid professional career.
Instead, he was left unable to work and relying on benefits for 20 years, while he waited for an axial SpA diagnosis.
Shabir said: “I was often in trouble for being absent from work – I didn’t have a definitive diagnosis to explain or justify my pain and fatigue, so managers had very little sympathy. I landed my dream job, but I had to leave within a year because I was taking too much time off sick.
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“When it became clear that work was going to be impossible, I started applying for financial support, but I was turned down on multiple occasions because I didn’t have a diagnosis that could explain why I was unable to work.
“Now, aged 51, with the right diagnosis and medication, I feel like I’ve got my life back and hoping to get back into work soon.”
Prof RJ Fordham, chair in Health Economics at the University of East Anglia said: “Our modelling suggests the cost of delayed diagnosis of axial spondyloarthritis is substantial.
“Most of the burden of these costs fall on the individual with the condition, with younger people paying a higher price.
“It’s clear from the modelling that earlier diagnosis and treatment of the condition is better not just for the individual but for the economy as a whole.”
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