Last year, the BBC revealed how GSK – the British drugs firm that first licensed this type of drug for Parkinson’s in the UK – had discovered, as far back as 2003, a link between its medication and what it called “deviant” sexual behaviour.
Warnings appeared three years later but only listed the potential for an “increased libido”, “harmful behaviour” and an “altered sexual interest”. These patient information leaflets still do not state how common impulse control disorders can be.
Now Layla Moran, who chairs the MPs’ Health Select Committee, is calling for warnings to list how common impulse control disorders are as a whole and state the specific types of behaviours – such as porn addiction – sometimes developed.
“It’s not just a side effect that affects an individual, it’s affecting families and communities and creating new victims,” she told us.
“What does ‘impulsive behaviour’ mean and how likely is it that they [patients] can get it? At the moment, patients don’t have that information, and without it, how can they be expected to mitigate it?”
Ms Moran says the MHRA’s Yellow Card scheme is “not fit for purpose” for reporting side effects people find shameful.
The government has also described our findings are “hugely concerning”.
However, the MHRA told us there are no plans to change warnings. These sexual behaviours are “individualised”, says the agency, and so it is not possible to include an “exhaustive list” in information leaflets.
It previously told the BBC it does not list the frequency of impulse control disorders because many people do not report them.
GSK said its drug had been extensively trialled, repeatedly approved by regulators around the world and prescribed for more than 17 million treatments. It said it had shared its report about safety concerns with regulators.
Solicitor Andrew’s prescribed drug, Pramipexole, is made by Boehringer Ingelheim. The company did not comment.
In 2017, doctors were required to give Parkinson’s patients, and their families verbal and written information about the risk of impulsive behaviours, and to regularly monitor their development – under guidelines from NICE, the National Institute for Health and Care Excellence.
But the BBC has heard from many Parkinson’s patients prescribed the drugs since those guidelines were introduced, who say they were not properly warned about the risks. Some patients say they are currently suffering from impulsive behaviours.
Alice and Frances have moved hundreds of miles away from the village they lived in, but their pain remains with them.
“I had my life taken away from me: my home, the community I lived in, but above all my son,” says Frances.
“I just don’t have the words to say how devastating that is.”
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