Outcry as cost to NHS of Wilson’s Disease treatment escalates by 600%

Posted on: 2nd August 2016

Patients have raised concern after the cost to the NHS of a life-saving drug for people with Wilson’s Disease, a rare genetic liver disorder, rocketed by around 600% in two years. Hundreds of people have signed a petition calling for fairer drug pricing regulations and protesting against the steep rise in the price of trientine dihydrochloride in light of the case.

The British Liver Trust said some pharmacies have been reluctant to dispense the drug due to the hikes, and some patients have been referred to their hospital pharmacy to access it.

Univar, which has been manufacturing and supplying trientine dihydrochloride for Wilson's Disease patients since 1985, said the size of its business and number of patients taking trientine in the UK is small. It also said it is investing to provide access to trientine for more Wilson's Disease patients who need it most, has recently made investments in extensive clinical trials and is involved in "compassionate use" programmes through support groups to provide access to the drug at discounted prices.

Mr Jude Pearson, of East Sussex, started the online campaign highlighting the issue, said the rises have been imposed by part of an "ugly, greedy" pharmaceutical industry driven by profit. For 30 years, Mr Pearson has been taking trientine dihydrochloride to successfully control his disorder, Wilson's Disease, which affects around one in 30,000 worldwide.

Mr Pearson said that it used to cost the NHS around £400 for 100 trientine capsules - equivalent to around 16 days' use for him. But he says it now costs the NHS nearly £3,400 for the same amount.

Mr Pearson said the incremental rises have resulted in the NHS being unable to provide him with his prescription for short periods of time. And he sees no justification for the "astronomical" rises as it is a long-established drug that has remained unchanged. "I understand new drugs cost a lot of money to develop but with long-established drugs such as mine, I find it a bit scandalous that its cost has risen so dramatically."

In its AGM report summary, the Wilson's Disease Support Group - UK said options were limited to challenge Univar, but members were urged to sign Mr Pearson's petition.

There has been a public backlash in the generic drug industry in recent months against "price gouging", when sellers price above the market price when no alternative is available. Health Secretary Jeremy Hunt in June asked the competition watchdog to look at claims that drug companies were exploiting the NHS to raise the price of generic medicines. It followed claims that suppliers were able to introduce large price rises by dropping the brand name and taking the medicines outside NHS profit controls.

Andrew Langford, Chief Executive of the Trust, said the NHS should not be held "to ransom" by makers of long-established drugs.

"We do know that some pharmacies are reluctant to dispense the drug due to the huge increases in price that we have seen in the last two years and some patients have been referred to their hospital pharmacy to access it," he said.

"The British Liver Trust feels strongly that the makers of long-established drugs that also face very limited competition, such as trientine dihydrochloride, should not be able to hold the NHS to ransom and we would urge the Government to ensure that these drugs are supplied to our health service at affordable levels."

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