This petition was submitted by Genetic Alliance UK; Tuberous Sclerosis Association; and Association of Glycogen Storage Disorders, having collected 455 signatures.
We the undersigned call on the National Assembly for Wales to review the use of the "exceptionality rule" in determining whether a patient can access a treatment through the Individual Patient Funding Request process.
To access treatments through the IPFR process, a patient population must demonstrate its exceptionality. For common illnesses, it may be possible to identify a subset of patients within the larger population who are more likely to respond to a particular therapy. For rare disease patients, demonstrating that you are a unique patient when you are part of a small group of patients whose condition is considered rare is practically impossible. The exceptionality criteria place an onus on clinicians to provide evidence that the patient’s clinical condition is significantly different to the general population of patients with the same condition and is likely to gain significantly more benefit from the intervention than might normally be expected. This evidence requirement is too onerous to apply to patients with rare diseases due to small patient numbers within rare disease populations. Patients with great clinical need are prevented from accessing life-changing/ life-saving treatments.
This petition was considered completed by the Petitions Committee at its meeting on 09/05/2017.
The Committee considered correspondence on the petition and agreed to close the petition given the main aspect – a review of the ‘exceptionality rule’ - has been met.
Full details of the consideration of this petitions by the committee and related documents can be seen on the Meetings tab above.
It was first considered by the Petitions Committee on 15/07/2014.
Business type: Petition
Reason considered: Assembly Business;
Status: For consideration
First published: 27/10/2014