Multiple sclerosis or MS, with its flaring attacks across the central nervous system, has always been a difficult disease to pin down. For a generation, the accepted treatments were steroids, painkillers and a “grin and bear it” stoicism.
But a golden age of therapy, forged by striking scientific advances, is revolutionising the way the condition can be treated. Clinicians now have a war chest to attack MS, although concerns about patchy access to drugs and supporting care are tarnishing the shining future.
MS is both an inflammatory and degenerative neurological condition punctuated by relapses occurring typically once a year, but the site and nature of the pain and disability vary.
Professor Siddharthan Chandran, a neurologist researching new MS treatments, sums up the challenge. “Each nerve cell has its own postcode and an attack can hit 200 of them. It is very difficult to deliver an answer to so many different postcodes,” he says.
“MS hits many different nerve sites in different regions of the brain and spinal cord. It is multi-focal and multi-phasing with pathologies that shift over time.”
The advent of disease-modifying treatments (DMTs), which reduce relapses by on average one third, changed the condition’s profile from their launch on the NHS in 2002.
Scientists have discovered that the brain can repair the damage caused by MS
And there’s more to come.
“MS has gone from no therapies to an armful, in less than 20 years,” adds Professor Chandran, who is director of the Centre for Clinical Brain Sciences and clinical director of the Anne Rowling Regenerative Neurology Clinic at the University of Edinburgh.
The clinical revolution has been matched by a greater awareness that MS mainly affects people in their late-20s and early-30s, and although life-changing, does not automatically or inevitably lead to a wheelchair.
It takes two forms. The first, relapsing and remitting, is an inflammatory condition that affects around 85 per cent of sufferers. The majority of those with relapsing-remitting enter a progressive phase in time. The second type is primary progressive and is a degenerative condition from the outset.
No two MS patients are the same, so the push is for personalised medicines. It is a tough challenge, but the pace of medical progress is inspiring. An array of DMTs is now available for relapsing and remitting MS, and more than 6,000 patients have been enrolled on a UK-based trial to unlock the secrets of progressive.
“You can really feel the sea change because we have a greater repertoire of drugs to use in relapsing and remitting,” says Jeremy Chataway, a consultant neurologist at the Queen’s Square MS Centre, the National Hospital for Neurology and Neurosurgery, University College London. “This is a golden time and let’s make sure everyone with MS is experiencing that and let’s makes sure we work really hard on progressive MS.”
Scientists have discovered that the brain can repair the damage caused by MS and a wave of trials is looking at drugs which can boost this natural process, with the hope the disease’s corrosive impact can be halted.
Latest figures put the number of people in the UK with MS at 107,000, with between 8,000 and 10,000 relapses occurring every year. And MS costs the UK economy £1.4 billion a year.
But, with 71 per cent of people with MS relying on unpaid care from family and friends, more still needs to be done to improve levels of treatment and social support.
Gavin Giovannoni, professor of neurology at Barts and the Royal London Hospital, believes a culture change is needed to ensure the disease is targeted early with the most potent therapies.
“If we take the approach of rheumatologists who treat aggressively and early, then in 15 years we could see wheelchairs as very rare,” he says. “But we have to act now.”
Consultants and campaigners worry that the pace of structural change in the NHS is too slow and short-term financial budgeting is making new drugs seem too expensive.
“MS is lifelong. Giving someone access to the treatments and therapies they need now could keep them mobile, in work and able to look after their family, saving a lot of money on care in the future,” says Pam Macfarlane, chief executive of the MS Trust.
Dr Chataway adds: “There is a need to galvanise patients, doctors, nurses to use these drugs more fully because they are available and they do cut the mustard.”
Equal effort has to be put into social care to manage symptoms and the MS Society’s far-reaching 2013 60th anniversary report, A lottery of treatment and care – MS services across the UK, calls for patients to have personalised review plans linked to integrated health and social care.
It also advocates better education for employers so they can ensure employees with MS stay in work as long as possible.
But the depressing statistics are that eight in ten will have stopped work completely within 15 years of diagnosis and 44 per cent of MS patients retire early in the UK compared with a European average of 35 per cent.
MS is on the threshold of revolutionary change, but it needs a considered and comprehensive strategy to ensure the advance continues at a rapid pace.