Our statment on patient funding and conflict of interest
We would like to take the oportunity to address a recent article published by The Observer on the 22nd July 2023 titled “Revealed: drug firms funding UK patient groups that lobby for NHS approval of medicines”.
The following statement is from our CEO, Dr. Rick Thompson in response to the article released by The Observer and their investigation into NICE drug appraisals.
On the 22nd of July 2023, The Observer published an article entitled “Revealed: drug firms funding UK patient groups that lobby for NHS approval of medicines.”
This article implied that pharmaceutical funding of patient organisations leads to those groups acting as “puppets for the industry” during NICE technology appraisals.
To say that we find this problematic is an understatement.
At Beacon, we repeatedly witness the care and attention that patient organisations, industry funders, umbrella bodies, and NICE themselves put into creating robust pathways for patient input in the HTA process, and the creation of unbiased patient industry partnerships. We support this work and hope that our own training, events and case studies help to support this vital part of the rare disease ecosystem.
Given this, we welcome the recent statement from NICE that underlines the importance of patient input in the NICE process.
How NICE manages the potential conflicts of interests of patient experts
Furthermore, we recognise the vital importance of pharmaceutical funding to the patient group community as well as the substantial challenge faced by groups when aiming to secure any funding at all to support their work. Patient groups are resource poor. They need more support and funding to deliver their vital contribution to the rare disease world – right now the pharmaceutical industry represents the best source of that funding, though we believe they could do much more.
We have been thinking about the funding, sustainability and development of patient organisations at Beacon for a while and are beginning to explore contacts and collaborators that may help to drive change in the system.
Until more funding and support is available, we actively encourage all patient groups to continue to work with the pharmaceutical industry as an informed, valued, independent partner – a partner whose unique services and expertise are recognised and compensated financially.
Dr. Rick Thompson
CEO – Beacon: for rare diseases
