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Drug that can relieve ‘unbearable’ blood cancer symptoms approved for Scotland

The Bloodwise logo. Bloodwise appears in black text against a white background
Posted by
09 Dec 2019

The Scottish Medicines Consortium (SMC) announced today that polycythaemia vera (PV), which is diagnosed in around 100 people in Scotland each year, can be treated with ruxolitinib.

Bloodwise has been working alongside the charity MPN Voice, to campaign for the drug to be made available on the NHS.

What is PV?

PV causes an overproduction of red blood cells, which increases the risk of blood clots, heart attack and stroke, and can also develop into leukaemia. While the majority of patients have a near-normal life expectancy, those who do not respond to treatment endure symptoms that can include persistent itching that leaves them unable to sleep or wash – so bad that some have reported contemplating suicide.

Life-changing news

Dr Ross Coron, policy advisor at Bloodwise, said: “Today’s news will be absolutely life-changing for those people with PV who don't respond to standard treatment.

"Symptoms can be devastating and make the lives of those affected unbearable. We get more calls on our support line from people worried about their PV symptoms than from people with far more common blood cancers."

Norma's story

Norma Balfour, 65, from Ross-Shire in the Scottish Highlands, has had PV for 14 years. She developed a resistance to chemotherapy and went through what she described as a 'living hell' for 8 months before her hospital applied to the drug company for ruxolitinib to treat her PV blood cancer, on compassionate grounds. She experienced intense fatigue and a burning itch that kept her from sleeping. She had memory loss, trouble speaking, washing, walking and considered suicide on several occasions.

Norma Balfour

She said: “I would have quite happily walked off the end of the harbour and just ended it all. It was just unreal. I had gone months without sleeping, hot flushes, and this dreadful itch - I hadn't washed for eight months. Your body feels like it has a hundred thousand million ants crawling in your skin. It would bring you to suicide - that is how bad it is.

“Since starting on the ruxolitinib, the difference has been remarkable. I have my energy back, the brain fog has gone, I can sleep again and I’m back to enjoying a busy and normal life.”

'An important milestone'

Professor Claire Harrison, a consultant at Guy’s and St Thomas’ NHS Foundation Trust, advisor to Bloodwise and co-founder of MPN voice, said: “This is a very important milestone for patients with PV - a disease with only a few treatment options.”

One clinical trial showed that six in 10 patients treated with ruxolitinib had their red blood cell levels brought under control after eight months of treatment, compared to fewer than two in 10 patients given the best available alternative treatment. Half of patients treated with ruxolitinib also had the severity of their symptoms significantly reduced – compared to just one in 20 patients treated with other drugs.

For confidential support and information about blood cancer call the Bloodwise helpline for free on 0808 2080 888.

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