When Jonelle Roback went into hospital for a monthly drug treatment infusion, she was shocked to find a piece of paper on her waiting room chair informing her that her medication was suddenly being switched.
Roback, 54, who was diagnosed with multiple sclerosis (MS) in 2009, had been on the intravenous drug Tysabri for 13 years, which had enabled her to “live a normal life”.
But in May, as part of an NHS England drive to save money, Roback and other MS patients had their Tysabri medication changed to a “biosimilar” drug — a medicine that has been shown not to have any clinically meaningful differences from the originator drug — called Tyruko, which is cheaper.
This marked the start of a horrible ordeal, with Roback experiencing debilitating symptoms including headaches, nausea, fatigue and severe bloating.
She has since been in contact with dozens of other MS patients who have also experienced difficulties after having their medication switched, and they have expressed “urgent concerns” to the NHS about the failure to properly consult patients about their treatment.
A group of more than 30 patients, including Roback, have written to the NHS chief executive, Amanda Pritchard, and the health secretary, Wes Streeting, to raise concerns about the “forced treatment switch”.
The letter says that some patients had their drug changed without their knowledge, adding: “The lack of communication and transparency has led to serious side-effects, stress, loss of earnings, and other detrimental impacts on our lives. We have discovered that we are effectively being used as ‘guinea pigs’ for this new treatment.”
Roback said it is vital that patients are given an active voice in medication decisions, adding: “It is outrageous that there was no discussion or consultation about changing the medication, just a piece of paper left on a chair. There was nothing we could do about it."
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Source: The Times, 25 October 2024