In this week’s blog we’re highlighting our CEO, Dr Rick Thompson’s response to a recent article published in The Guardian.
The article explores the financial relationships between the pharmaceutical industry and patient organisations.
‘Doctors rarely understand how influence really works. The result: an NHS bowing to the needs of big pharma’ an article written by Margaret McCartney, raises critical points about transparency and independence in the healthcare space.
Particularly, when it comes to patient advocacy groups (PAGs) receiving funding from the pharmaceutical industry.
Margaret McCartney points to £23 million paid to PAGs, and implies that some of this funding may coincide with their consultations with regulatory bodies like NICE, suggesting a lack of independence in their representations.
Ultimately, it suggests that patient organisations receiving funding from the pharmaceutical industry impairs their autonomy, and makes groups less likely to criticise them.
Beacon have been working with these patient organisations for 12 years. Many of these patient organisations – particularly those representing rare disease communities – are often small, voluntary, and underfunded.
These groups play a vital and transformative role in the development of medicines for their conditions. This is now widely recognised by the pharmaceutical industry and researchers, leading to significant improvements in patient interactions. This change has been hard won and is crucial to continue the development of effective medicines for some of the rarest conditions globally.
95% of people with rare diseases have no treatment options – new and repurposed medicines are vital to meet the needs of these underserved patient populations. While I recognise the fear of potential bias, the huge benefits that patient groups bring, with little or no support far outweighs the risk, and does not reflect our extensive experience with PAGs.
We cannot ignore the fact that these organisations are asked to deliver increasingly professional and complex input into the drug development pathway for regulators, pharma, and other stakeholders – often without financial support, let alone professional recompense.
It’s an unfair burden on groups that are already facing unprecedented challenges. Many of these organisations are acutely aware of the potential for conflicts of interest, and they work hard to maintain their independence.
But without alternative funding, they are often left with little choice but to seek industry support.
Without these groups, we would see a hold up in drug development – and there are currently few funders outside the pharmaceutical industry willing to meaningfully support their work.
Beacon would love to see an increase in the funding available to patient organisations, and increased independence of the delivery of pharmaceutical funding to groups supporting diseases outside of their portfolio or pipeline.
We need to ensure those eliciting input from patients understand and manage those conflicts (as NICE actively does), and help patient groups manage their own conflicts.
The alternative is either a backward step in the development of orphan medications, or the rapid development of a completely new funding stream for these vital patient organisations.
The current funding of patient groups by pharma is far from perfect. But I for one am glad someone is trying.
Dr Rick Thompson
CEO, Beacon for Rare Diseases
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