The government has launched a UK-wide consultation undertaken by the Department of Health on the topic of rare diseases (defined as those that affect fewer than 5 in 10,000 of the population). This follows the European Council’s recommendation that every member state of the EU should develop a national strategy on rare diseases.
The consultation makes a lot of suggestions about improving care including the use of specialist centres, training for all doctors, better care coordination and greater use of disease registers. How this is reconciled with the plan being “sustainable and affordable within existing resources” isn’t spelt out.
The consultation also highlights that their “priority is to give NHS patients better access to effective and innovative medicines and that is why we are working towards a new system of pricing for branded medicines, where the price of a drug will be linked to its assessed value.” How access can be gained to a medicine if the manufacturer refuses to sell at a value based price isn’t spelt out either.
The closing date for responses is Friday 25 May 2012.