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To: Jeremy Hunt MP, Secretary of State for Health

Stop pharmaceutical companies hiking vital drug prices unfairly

Please demand that Univar reverses the huge price hike on Trientine Dihydrochloride, the drug that keeps Wilson's Disease patients (and patients with other conditions) alive. The NHS is now struggling to provide this vital and long established drug and lives are at risk.

Why is this important?

Update (28 August, 2016):

Since I started this petition the NHS Trust where I live has decided, due to the huge increase in cost imposed by Univar, the manufacturer, that it can no longer supply me with Trientine Dihydrochloride, the drug that I rely on to control an otherwise fatal rare liver condition called Wilson's Disease. The situation for me and other Wilson's Disease patients has taken a turn for the worse so please sign the petition and please share it and encourage as many people as possible to do the same.

Thank you so much!

Jude
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The amazing NHS, funded by us through our taxes, buys drugs and provides them to us, our family members, our friends, our colleagues, to help us beat, alleviate and control all kinds of physical and mental health conditions.

My case is just one example of how pharmaceutical companies and manufacturers unfairly hike the prices of vital lifesaving drugs in order to inflate profits and company share prices. It's not the only example out there and I'm sure it's not the worst. We need to stand up and let them know that unethical price hikes are not acceptable.

I have a rare genetic liver condition called Wilson's Disease. To control this, I take a drug called Trientine Dihydrochloride, which is a product that's been unchanged since it was developed for the treatment of this potentially fatal condition in the 1960s. Trientine is owned by multinational corporation, Univar, and it's been a registered product in the UK since 1985.

Trientine is a great drug! It's kept me alive and healthy for the past 30 years when other drugs haven't worked. The fantastic NHS provides Trientine to me free of charge (I just pay the tiny prescription fee).

The hospital pharmacist that supplies me with Trientine told me that until recently it cost the NHS about £400 for 100 Trientine capsules (that's a lot, right!) and that was about 16 days' worth for me. Univar has, over several incremental rises, increased the cost by about 750% so it now costs the NHS nearly £3,400 for the same amount. That's £205 each day to keep me alive and healthy; £1,431 each week; £6,219 each month; £74,624 each year... I now face periods without this vital drug because the NHS pharmacy cannot provide enough due to their spending limits and the increased cost. I don't know what this means for my health exactly but it's not good - I know that much. I'm not the only person. Others with Wilson's Disease are facing the same uncertainty over their health and prospects for controlling this condition.

This is the ugly, greedy, unethical face of the pharmaceutical industry. Companies often have a monopoly on the rights to a certain vitally important drug and abuse this status to make profit hand over fist and inflate their share prices with no care for good organisations like the NHS that they're ripping off, and no regard for the patients that ultimately suffer, fall ill and die by being priced out of the treatment that they need.

It can cost a pharmaceutical company a lot of money to develop new drugs but we're talking here about products that are long established and unchanged. There's no justification for astronomical price hikes.

We need to show that we care and demand better ethical standards and enforce fair pricing regulations with us the people and our NHS at the heart.

Thanks.

Updates

2016-09-14 21:43:02 +0100

1,000 signatures reached

2016-08-31 15:08:02 +0100

Since I started this petition the NHS Trust where I live has decided, due to the huge increase in cost imposed by Univar, the manufacturer, that it can no longer supply me with Trientine Dihydrochloride, the drug that I rely on to control an otherwise fatal rare liver condition called Wilson's Disease. The situation for me and other Wilson's Disease patients has taken a turn for the worse so please sign the petition and please share it and encourage as many people as possible to do the same.

Thank you so much!

Jude

2016-07-25 00:10:21 +0100

500 signatures reached

2016-07-21 16:25:50 +0100

100 signatures reached

2016-07-21 07:13:19 +0100

50 signatures reached

2016-07-20 22:48:10 +0100

25 signatures reached

2016-07-20 22:21:13 +0100

10 signatures reached