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NHS: Paroxysmal Nocturnal Haemoglobinuria

Volume 704: debated on Wednesday 8 October 2008

My right honourable friend the Minister of State, Department of Health (Dawn Primarolo) has made the following Written Ministerial Statement.

Over the summer, Ministers received advice reflecting the deliberations of the National Commissioning Group (NCG), the National Specialised Commissioning Group (NSCG) and strategic health authority chief executives about taking a national commissioning approach to the paroxysmal nocturnal haemoglobinuria (PNH) service, including the issue of Eculizumab’s availability on the NHS. We have given these complex issues very careful consideration.

The Government can now confirm that Ministers have decided that the NHS should nationally commission the PNH service for clinically eligible patients from 1 April 2009, through the National Commissioning Group. In taking this view, Ministers have taken account of the following key points:

research has provided good evidence that Eculizumab is a highly effective treatment for this condition for a number of patients;

treatment is long term and life-long for most patients;

the service to treat this condition meets the criteria for national commissioning; and

the national risk pool approach offers significant benefits to PCT commissioners who are not then vulnerable to multiple high cost patients.

The National Specialised Commissioning Team will now make arrangements with NHS stakeholders to ensure that arrangements for the national commissioning of PNH services are in place for 1 April 2009. It will also be considering with the drug’s manufacturer and with the local NHS any transitional issues that need to be managed over the next six months.