Because of rare illness, Louise Moorhouse is on a special diet of pills or foul-tasting shakes. There's a drug that would allow her to eat like anyone else - she took it for three years during a clinical trial. But the NHS won't pay for it, reports the BBC's Deborah Cohen - and the drug company stopped giving it to her once the trial was over.
Louise says she has to completely avoid 80% of normal food, and the protein in her diet has to be severely restricted - which may mean weighing it on scales before eating it.Dinner dates are best avoided, she has learned. "The drug was too expensive and the NHS decided that there wasn't enough evidence of efficacy of that drug at that time and so they said no to prescribing it," says Anita MacDonald."It was a massive shock to my system," she says."I had to relearn almost everything. It had a massive effect on my concentration, my mood, my focus at work, my relationship."
But critics say the profitability - and the high price - of orphan drugs does not reflect the amount of effort companies have had to make to generate them. When Kuvan was licensed a few years later and the NHS refused to pay the hefty price, patients were stuck in the middle. This remains the case, even now that the NHS has come to recognise the efficacy of the drug.
"You want your patients to gain any benefit from the work that they've done. They've entered the trial in good heart. We as scientists enter the trial in good heart," says Anita Macdonald.
roll a blunt and enjoy the food 😁
So, what, she didn't eat for 10 years?
The end of that story is the real story. Why did the drug company not keep up the treatment like they did for the others in the trial?
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