Irfon was tearful when he learned the outcome of the IPFR
review before he died and although the move by Welsh Labour was too late for him, he knew others would finally benefit from him telling his story.
When considering IPFRs
four key issues are considered: evidence of efficacy, exceptionality, affordability, and ethics.
indicated that with expiration of the initial term approaching, purchase of the units will significantly reduce administrative costs associated with maintaining the partnership.
A patient can request a review of the IPFR
However, there was more work to be done and we continued campaigning for a review of the IPFR
process so that it would become a fairer, transparent and clearer for individuals and families.
In September 2016 I felt privileged to be invited by Health Minister Vaughan Gething to sit on an independent panel to review the IPFR
The health board has an IPFR
panel to consider each request on its merits, using clinical evidence available, and the criteria set out within the All Wales policy.
But now an extensive review of the IPFR
will be conducted to examine if the current "exceptionality test" is equitable for patients.
The panel comprises: | Irfon Williams, a retired senior nurse who has first-hand experience of the IPFR
process as a patient; | Professor Peter Littlejohns, an independent medical academic and professor of public health (honorary consultant) at King's College London who has experience of the medicines appraisal process and equity issues arising out of treatment decisions; | Professor Phil Routledge, a former chair of the All-Wales Medicines Strategy Group (AWMSG) and director of the All-Wales Therapeutics and Toxicology Centre (AWTTC), the executive arm of AWMSG; | Dr Ben Thomas, a consultant nephrologist who will provide input on medical ethics and law, and; | Professor Chris Newdick, a barrister and professor of health law at the University of Reading.
Under the IPFR
system a patient applies to their local health board funding for a non-routine drug or treatment.
The system in Wales has been plagued by the recurrent issue of the IPFR
process, something where the term "exceptionality" is applied to a person applying for non-routinely available treatment within a Welsh health board.
Her consultant recommended she try Avastin to relieve her of her agonising pain, so the family began paying for it while she appealed for NHS funding under the IPFR