P-04-570 Inequitable Access to Treatments That Have Not Been Nationally Appraised in NHS Wales
This
petition was submitted by Genetic Alliance UK; Tuberous Sclerosis Association; and
Association of Glycogen Storage Disorders, having collected 455 signatures.
Petition text:
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.
Additional Information:
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.
Status
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.
Further information
Business type: Petition
Reason considered: Senedd Business;
Status: For consideration
First published: 27/10/2014