The Hepatitis C Trust is considering seeking a judicial review of NHS England’s decision to ration access to hepatitis C treatment

The Hepatitis C Trust wrote to NHS England to ask it to reconsider its decision to limit the number of people with hepatitis C who are allowed access to new NICE approved drugs that cure the disease. On Monday 16th May, 2016  NHS England replied with a response that The Hepatitis C Trust did not find satisfactory. With great regret it now has to consider seeking a  judicial review of the decision.

Last year NICE approved a series of new drugs for the treatment of hepatitis C through its technology appraisal process. These drugs cure the disease in around 90% of those who take them. 

Yet in March 2016 NHS England imposed a cap on the number of people that hospital trusts are allowed to treat each month with these drugs and introduced financial penalties for those which exceed the cap.  This is the first time NHS England have imposed a cap on drugs that NICE have said are cost effective and must be made available.

“It is truly ironic that NHS England should chose to start rationing drugs that are so effective they cure almost everyone who is treated”, said Charles Gore, Chief Executive of The Hepatitis C Trust. “It feels like people with hepatitis C are being picked on. We are having to look to the courts to protect them.”

NHS England’s approach is in marked contrast to that of many other countries, like Australia, Germany and Scotland, that see the introduction of these new drugs as an opportunity to treat as many as possible and eliminate hepatitis C in their countries. In addition to being much more effective, the new drugs are much more tolerable than previous regimes.

“People have been waiting years for these drugs because they felt what was on offer before was too toxic,” said Samantha May, The Hepatitis C Trust’s Support Services Manager. “Now suddenly to be told they may have to wait months, even years more is really distressing. Our helpline is overwhelmed with people who cannot understand why NICE says they can be treated now but their hospitals are sending them away and telling them they’ll get a letter at some point in the future.” 

In order to fund its legal action, The Hepatitis C Trust is launching a crowd funding campaign. Charles Gore said: “We are a small charity and legal action is a very significant financial risk for us but we absolutely have to stand up for the people we are here to support. We do not want to fight the NHS but we will fight for a fair NHS. We hope the public will get behind us in this.”

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