A multiple sclerosis (MS) patient who described cannabis extract drug Sativex as a “miracle drug” after a four-week trial has been told that she would have to pay £450 a month to have it prescribed, as is not funded on the NHS locally because of national guidance about its “cost-effectiveness”.
Sally Deegan was diagnosed with MS in 2015 and experienced symptoms including a loss of sensation through her entire body and black-outs. She says she is reduced to tears most nights as she struggles to walk, talk and, most frustratingly, feel her one-year old son, as she loses feeling in her hands.
But after being referred by doctors at Scunthorpe General Hospital to an MS specialist in Hull, she was prescribed a four-week trial of Sativex, a specific extract of cannabis which has been scientifically proven to improve symptoms for MS sufferers, in October.
Sally’s life was turned around by the drug, which is licenced to be prescribed in the UK for the treatment of MS-related spasticity but has not been fully assessed by the National Institute for Health and Care Excellence (NICE).
Sally told Grimsby Live: “For me, it literally is a miracle drug. After using it, I was able to stand up, walk, talk and just feel like a normal functioning person.
“Quite simply, Sativex allows me to be a normal person. I can’t express how much of an amazing feeling it was to just feel normal again.”
Sativex is not included in the 1 November law change which nominally permitted specialist doctors to prescribe cannabis-based medicines. Sally initially thought the law change was “a dream come true… only for it and any hope to be snatched away a few days later when information disseminated to specialists told them they were not to prescribe Sativex as it had been deemed to be ‘not cost effective’ at £450 per prescription.
“How can a disabled mother on disability benefits afford £450 per month?”
Sally has set up an online fundraising page with the aim of raising £5,200 to pay for a year’s worth of Sativex treatment, as well as administrative costs to help put the case to the Government for the drug to be funded on the NHS.
But she has had to come off the drug due to the prohibitive costs, affecting her mentally as well as physically. She said: “I started to get cramps everywhere in my body again, which hadn’t happened since I started to take the prescription. At times, I lost the ability to do the simplest things like getting up and walking.
“But the worst part for me is I cannot feel the smoothness of my baby boy’s skin. I am not able to feel my son’s skin against mine when I hold him.
“Sometimes, it makes me feel as low as I can possibly imagine. I feel like my son deserves something better than someone just laying in bed. My family deserve someone who can jump in the car and go to Cleethorpes for a day out, someone who they can have fun with, someone who can look after them and not the other way around.”
On her fundraising and fight for Sativex to be funded, she said: “I feel responsible to take it as far as I can so that legislation can change so that people who may not be able to fight for this may one day have access to the drug.”
Guidance on the NICE website says Sativex is not recommended for people with MS because it is “not a cost effective treatment” – ie because the NHS, under attack from the forces of privatisation, is underfunded.
Information from the Multiple Sclerosis Trust on its website says: “Sativex can only be prescribed by a specialist doctor with experience of treating MS spasticity – consultant neurologists, consultant rehabilitation specialists and consultant pain specialists.
“Use of Sativex is currently limited to those people who respond to the first four weeks of treatment. If there is no clear improvement in spasticity-related symptoms, treatment is stopped.
“Sativex has not been fully assessed by NICE as part of a separate technology appraisal. However, in the 2014 MS Clinical Guideline NICE did not recommend prescription of Sativex ‘because it is not a cost effective treatment’.”
A spokesman for the NHS North Lincolnshire Clinical Commissioning Group said: “We are committed to following the national clinical evidence base for treatments but are sensitive to the individual needs of the patient. We will look into this case.”