Despite new therapies available through the National Health Service, too many people with multiple sclerosis miss out on early treatment, writes John Illman
In April the National Institute for Health and Care Excellence (NICE) approved a £56,000 infusion therapy to treat relapsing-remitting multiple sclerosis, the most common form of the condition. Relapses cause a wide range of problems, from vision impairment to swallowing difficulties, fatigue and incontinence.
Lemtrada (Alemtuzumab) may seem to be prohibitively expensive, but it may be the cheapest drug therapy for many of the UK’s 107,000 people with MS (MSers).
Standard treatment involves just two sets of infusions a year apart. In contrast, other first-line disease-modifying treatments (DMTs) mean regular self-injection and cost between £6,000 and £12,000 a year, even with reported NHS discounts of up to 40 per cent. Patients may need such treatment for up to 15 years or more. Thus, 15 years treatment could cost up to £180,000.
Second-line treatments for more severe illness can cost £19,000 a year.
Drug costs have been associated with controversy and treatment delays ever since the launch of the first MS therapy in 1993 – the UK ranked third worst out of 27 European countries in a recent survey of DMT prescribing. Only 40 per cent of eligible UK MSers receive DMTs, according to the MS Society.
Nick Rijke, MS Society director of policy and research, claims: “No neurologist would say so on the record, but some say off the record that they’re under pressure not to prescribe DMTs.”
This may be a false economy. A recent US study concluded that early use of DMTs reduced the need for expensive in-patient hospital care, and found no significant difference between early and late-treatment costs.
Drug costs have been associated with controversy and treatment delays ever since the launch of the first MS therapy in 1993
Gavin Giovannoni, professor of neurology at Barts and the Royal London Hospital, says: “This study suggests that we can’t really use health economic arguments to delay treatment in early MS.”
The biggest savings from DMTs are yet to come, he believes, by delaying or even preventing the onset of secondary progressive MS (SPMS). There are wide variations, but on average about 65 per cent of people with relapsing-remitting MS develop SPMS 15 years after diagnosis. SPMS causes a worsening of disability, rather than a relapse-recovery cycle.
Professor Giovannoni explains: “In almost every MS clinic I do, I see the difference between MSers who have either had a delay in getting a diagnosis or in getting access to effective therapy, compared with those with early access to optimal therapies with no evident disease activity. The latter MSers are leading near normal lives, whereas the former have to live with consequences of end-organ damage [damage to major organs fed by the circulatory system].”
Yet Mr Rijke observes: “Unfortunately many neurologists still advise patients: ‘Let’s wait and see before prescribing any treatment’.”
Patients must have had two relapses in the past two years to qualify for DMTs, but they may be denied treatment if symptoms are attributed to causes other than MS, according to the MS Society.
Mr Rijke adds: “The definition of a relapse is not set in stone and there is room for neurologists not to prescribe DMTs.” This was a driver in the MS Society’s new campaign for “fair and equal access to the right treatment at the right time”.
The Treat Me Right programme was launched in April in the critical run up this year to the ten-year evaluation of the MS Risk Sharing Scheme which was set up in 2002 after NICE ruled that two DMTs were not cost effective and should not be available on the NHS. The manufacturers reduced prices to satisfy NICE and agreed to further reductions if patient outcomes were worse than predicted.
In 2010, James Raftery, professor of health technology at Southampton University, claimed in the British Medical Journal that the NHS was paying for thousands of MSers “to receive drugs that monitoring data suggested were ineffective”. The scheme, he said, had cost about £50 million, including £40 million on drugs.
Predicting that costs would almost double as more patients were treated, he said: “This may well be the most expensive publicly funded ongoing health-related study in the UK, and probably anywhere, ever.”
But clinicians insist that DMTs are evidence based and withdrawal of the scheme could have a critical impact on drug costs. Patients like Marlo Donato Parmelee, 42, are convinced they are “life-transforming”.
Ms Parmelee, author of Awkward Bitch: My Life with MS, was diagnosed ten years ago after developing double vision and falling on the stairs at work. Before starting treatment six months later she had four relapses. On one occasion, she could not distinguish the floor from the ceiling and fell into a cupboard. Colleagues, she was horrified to learn, had thought she was drunk or on drugs.
Unable to work full time, she “lost a promotion and a substantial pay rise”, but now successfully works a 32-40 hour week as general manager at a luxury goods outlet. Her relapse rate while she was taking an injectable DMT fell by 50 per cent, making her treatment a better than average success story. DMTs are reported in clinical trials to reduce relapses by about a third over two years. Ms Parmelee is now taking a monthly infusion therapy.
Innovation in MS treatment is not restricted to drugs. NeuroResponse, for example, is a new care model developed by Bernadette Porter, MS consultant nurse at the National Hospital for Neurology and Neurosurgery. Enabling patients to be treated at home, rather than having to travel to a clinic, the system includes a direct telephone/triage line, an e-mail advice service and teleconferencing.
Ms Porter says: “If you take your lead from patients and really listen to what they are telling you, all sorts of good ideas flow. If you combine that with evidence-based practice, then real improvements can be made.”
But critics claim that, in the face of economic restraints, many neurologists are ignoring the evidence that supports DMT.