Life-changing MS drugs that helped Stephanie to FIVE medals
So why are so many others denied new therapies?
STEPHANIE MILLWARD was curious, but not alarmed, when her eye began to flicker visibly. The champion swimmer, was, after all, full of energy and had shown such a talent in the pool that she was hoping to join the Great Britain squad for the Sydney Olympics in 2000 — at 15, she had broken the British record for 100m backstroke.
But then some other, unusual symptoms began. ‘I’d been to a swimming event in China — I should have come first, but finished eighth,’ recalls Stephanie. ‘When I got back I felt so ill I had to have a couple of days off school.
‘I was weak, had no energy and my eyesight wasn’t right — my vision was jumping up and down. I kept bumping into people in the pool.’
Six months on and Stephanie’s energy levels were worryingly low. Her GP referred her to a specialist who sent her for an MRI scan.
It showed scarring and inflammation on Stephanie’s brain. Initially her neurologist suggested it was some kind of infection, but six months later, with symptoms continuing, it was confirmed that she had multiple sclerosis (MS), an incurable condition that attacks the nervous system.
‘My doctor said I’d be in a wheelchair in five years,’ says Stephanie, now 34, who lives in Wiltshire. ‘He told me I’d slowly lose control over my body. So there was no way I’d ever be able to swim again and I should give it up.
‘I was 17 and hadn’t even heard of MS. My mum gave me a book about it. I cried the whole way through.’ MS is an autoimmune condition where the body’s immune system attacks myelin, the protective sheath around our nerves, causing signals between the brain and the body to become disrupted.
It affects more than 100,000 people in the UK. Symptoms include loss of vision, balance problems, lack of bladder control, slurred speech, fatigue and cognitive problems.
Stephanie has the most common form — relapsing-remitting MS, where symptoms flare up and then go away for a time. Around 65 per cent of people with relapsing remitting MS will go on to develop progressive MS — where symptoms gradually worsen over time with no recovery.
A small number of patients have primary progressive MS, and go straight to this stage. Some studies suggest MS rates are increasing, but it’s not clear why.
The condition is thought to be caused by a combination of genes and environmental factors such as, possibly, a lack of vitamin D — rates are higher in countries further from the equator.
There’s also evidence that viruses such as the Epstein Barr virus, which causes glandular fever, can trigger it. The theory is that a virus might cause the immune system to overreact, kick-starting MS in people with a genetic susceptibility.
Last year, researchers at McGill University in Canada suggested that people genetically prone to low vitamin D levels are at an increased risk of developing MS.
ANOTHER study, published in the Journal of Neurology, Neurosurgery and Psychiatry suggested that a common gut microbe, Helicobacter pylori, may protect against MS, as it is less prevalent among women with the disease.
Researchers have also examined links with vaccines, but have not found a clear connection.
However, Stephanie has always suspected that her MS was triggered by a hepatitis A vaccination she had before her trip to China. ‘I was well before it and have been ill ever since,’ she says.
In the months after her diagnosis, Stephanie’s symptoms worsened. ‘I had terrible pain and weakness down my left side, my eyesight deteriorated and I went completely blind on three occasions. My balance got so bad I sometimes had to use a wheelchair,’ she says.
‘I was put on steroids and started getting fat. Having always been very academic, I failed my A-levels because my memory was ruined.’
At that point, in the early 2000s, the only treatment available was beta interferon injections, which reduce inflammation damaging the nerve fibres (these reduce MS symptoms, but don’t slow its progression).
They are recommended for anyone with relapsing-remitting MS who has experienced two relapses in the past two years, but Stephanie’s local health authority, then NHS Wiltshire, refused to fund it. Statistics show the UK is among the worst places in Western Europe to have MS because patients have poor access to drugs and specialists.
Last year, a review found drug treatment was often delayed for patients with the relapsing-remitting form as doctors used a ‘wait and see’ approach, on the assumption that it only damages the nervous system during relapses.
However, the MS Society said there had been a shift in the understanding of the disease and warned that the relapsing form can, in fact, be continually destructive from early on, and treating it early is vital to preserve brain and spinal cord tissue.
The tragedy is that there have been huge advances in treatment: 11 drugs have been licensed for relapsing-remitting MS — which can reduce the frequency and severity of relapses and slow or even halt its progression. But many patients are not prescribed them. They may not even be aware of them, because of a lack of access to neurologists who specialise in MS. Hence, although there are also treatments that can help with specific symptoms, six out of ten patients with relapsing-remitting MS don’t take such a treatment.
The MS Society has launched a campaign, Treat Me Right, which calls for all patients to have equal access to drugs. In October 2014, government health watchdog the National Institute for Health and Care Excellence (NICE) issued recommendations for patients with MS, emphasising the need for regular reviews of their treatment and care with a specialist.
But it failed to stress the importance of ensuring patients are made aware of the many treatments available. NICE also rejected two new drugs, including Sativex, a cannabis-based treatment for relieving spasticity — muscle spasms and stiffness.
In one study of 500 people with spasticity caused by MS, published in the European Journal of Neurology in 2011, nearly half reported an improvement after taking it. However the guidelines ruled the drug, at £4,250 per patient per year, was too expensive for England; but it has been approved in Wales.
‘In the UK we have one of the worst prescribing rates in Europe,’ says Dr Sorrel Bickley, head of biomedical research at MS Society. Dr Raj Kapoor, a consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, says when he started as a consultant 20 years ago ‘we had little more to offer than physiotherapy and one or two drugs to reduce their symptoms. Now when I see a patient with a new diagnosis I am keen to get them started straight away on drugs that can delay their disability’.
Six months after her diagnosis, backed by her local newspaper and MP, Stephanie’s local authority relented and she began having beta interferon injections.
‘This may just be the power of the mind, but as soon as I started taking it, I got better,’ says Stephanie. ‘My eyesight stopped jumping around so much, and walking got easier. Things suddenly felt more positive.’
She was able to start part-time work, and in 2005 got back in the pool for the first time in five years. ‘It was hard, but I pushed myself to keep going.’
Stephanie’s husband, Adrian, 49, who works for a housing agency, persuaded her to try for the Paralympics two years later, despite her protests that she was too old and would get sicker.
‘After seven weeks’ training, I ended up representing Great Britain at the 2008 Beijing Paralympics, coming fourth, fifth and sixth in my races. I couldn’t believe it.’
Stephanie stopped the beta interferon injections just before the Games.
‘I wanted to win on my own, without drugs. And it seemed to get better, instead of getting worse, which I know can happen with relapsing-remitting MS.’
Stephanie kept training, and in 2012, defying her doctors’ predictions, won five Paralympic medals — four silver, one bronze — at the London Games.
She has been training hard ever since and will be competing at the Paralympics in Rio from Thursday, determined to win gold.
She knows her condition is likely to progress, but is optimistic. ‘It feels like there’s lots of good news for people with MS at the moment. By the time my illness gets worse, there might be a cure.’
mssociety.org.uk Paying the Price, by Stephanie Millward, published by Brown Dog Books at £11.99. Stephanie begins her Rio campaign in the 400m freestyle on Thursday.