The NHS has been criticised by doctors for denying multiple sclerosis patients access to a drug derived from cannabis which regulators have approved to help relieve their symptoms.
MS specialists claim primary care trusts (PCTs) in England are exacerbating patients’ pain and suffering by refusing to let them use Sativex. Some PCTs say the drug, which costs £11 a day, is not worth the money, but doctors insist it is the only medication that can help some patients.
Sativex can relieve spasticity, or muscle stiffness, in MS patients. It became the first cannabis-based medicine to be licensed for use in the UK almost a year ago by the Medicines and Healthcare products Regulatory Agency (MHRA).
Only doctors specialising in MS, such as neurologists and pain consultants, are allowed to prescribe the drug, which is an oral spray. It can only be prescribed to those who found that other drugs did not bring relief, or who experienced bad side-effects while taking them.
Patients in the West Midlands, Yorkshire, East Midlands, Suffolk and south-west England are unable to obtain Sativex. Patients in Scotland have also had difficulty getting it.
Dr Steve Sturman, a consultant neurologist and clinical director of neurology at City hospital in Birmingham, is unable to prescribe Sativex to patients because of the stance taken by NHS decision-makers in the West Midlands. “As a consultant it is disheartening when I cannot prescribe a licensed treatment to my patients, despite careful assessment of the evidence,” he said. “I have a number of patients who may benefit from Sativex, but with this local decision in place it looks like they are going to go without.”
Susan Garrity, who was diagnosed with MS in 2000, has been refused Sativex despite her neurologist arguing that it would benefit her. The 69-year-old from Alfreton, Derbyshire, said: “I’ve tried every other treatment going for spasticity and nothing works. I was excited when I saw Sativex had been licensed; it gave me another treatment option, but I’ve been refused and I’m not sure why,” she said.
“I see my granddaughter playing in the garden and she shouts at me to chase her, but I can’t. It breaks my heart. I’m upset and frustrated.”
Sativex can make it easier for MS patients to move. It can ease spasticity, which if left untreated can lead to pressure sores, falls and serious fatigue.
Dr Neale Pimenta, a GP who runs an MS clinic at Darent Valley hospital in Dartford, Kent, said Dartford and Gravesham PCT were funding Sativex for 25 patients who are already on it. But it has refused to let about 25 others have it, despite pleas from their hospital’s specialist.
“You could say that it’s heartless. The trouble is, the people making these decisions don’t understand the disease,” said Pimenta, who was diagnosed with MS himself in 2002. “The PCT’s attitude is causing unnecessary suffering. Sativex isn’t a magic cure for MS; that has to be stressed. But this medication will significantly reduce people’s symptoms – as well as bladder problems, sleep disturbance and tremor – yet they can’t get it. The NHS should be prescribing this, not restricting it unfairly.” Dr Pimenta said it was “financially short-sighted” to deny his patients Sativex as this forces MS sufferers with mobility problems to travel to London to get the drug at three hospitals that do prescribe it: Charing Cross, St Mary’s and the National Hospital for Nervous Diseases.
The Peninsula Health Technology Commissioning Group, which decides what treatments the NHS will pay for in Devon and Cornwall, decided it would not fund the drug. The group accepted data showing Sativex boosted patients’ quality of life, but pointed out that it came from a clinical trial lasting just four months, when the drug is intended for long-term use. “So there is uncertainty over benefit in the long-term,” the group concluded. That, as well as the drug’s high cost “makes the improvements in quality of life produced by this treatment poor value for money to the NHS”.
The MS Society claims Garrity’s case is “the latest example of inconsistent and dubious decision-making by local health authorities on Sativex”. Denying the drug ultimately costs the NHS more because patients with unrelieved spasticity symptoms end up needing hospital treatment, the charity added.
Dr Jayne Spink, the society’s director of policy and research, said the drug had been shown to be safe and effective after undergoing extensive clinical tests. “We’ve been overwhelmed with inquiries from people with MS who’ve been upset and frustrated that they can’t access the treatment. We’d like to see Sativex available to anyone who might benefit from taking it.”
Almost 3,500 people have downloaded guidance from the society’s website about trying to access Sativex, including more than 700 in March and April.
PCTs are having to make individual decisions about Sativex because the National Institute for Health and Clinical Excellence (NICE) has not yet ruled if it represents good value for money for the NHS, said the Department of Health. A spokeswoman said: “In the absence of NICE guidance, primary care trusts make local funding decisions on individual treatments taking into consideration all available evidence.
“NICE is currently developing guidance on Sativex as an add-on treatment of moderate to severe spasticity in multiple sclerosis. Final guidance is expected to be published in 2012.”
The government’s NHS plans will see family doctors replace PCTs as the decision-makers on which treatments patients receive, she added. “Our proposals to modernise the NHS would empower GPs to make these funding decisions based on clinical knowledge and an understanding of their patients’ individual needs.”
• This article was amended on 31 May 2011. The original said Dartford and Gravesham PCT were funding Sativex for 25 patients who are already on it. But it has refused to let about 25 others have MS. This has been corrected.
– Article originally from The Guardian.