Our CEO, Dr Rick Thompson reacts: The financial relationships between the pharmaceutical industry and patient organisations
Beacon for Rare Diseases
No rare journey alone. Previously known as Findacure.
Read Rick's response to a recent article published in The Guardian.
‘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.
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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.
However, the absolute approach outlined in this article risks making “the perfect the enemy of the good”. We need improved patient input into medicines development to ensure the best possible treatments reach the patients that need them, and to get that these groups need funding. Their involvement leads to more insights into patient perspectives, improves the design and delivery of clinical trials, and accelerates access to life-changing medicines.
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.
I missed the original article, Rick, and only found time to get back to it now, hence my delayed comment. Actually I was surprised at how mild the criticism of patient orgs was in that piece, especially when compared with the much more damning one from a year earlier https://www.theguardian.com/science/2023/jul/22/revealed-drug-firms-funding-uk-patient-groups-that-lobby-for-nhs-approval-of-medicines This article was so superficial as to be pointless, as with so much "journalism" these days and even the hints at possible solutions are naive beyond belief. The "Irish solution" the author touts as a solution will only lead to fewer events and less informed clinicians (and more importantly researchers). Some of that might be welcome - I sometimes wonder when serial conference junkies get time for the day job, but followed through to its logical conclusion it would be totally against the patient and public interest in whose name it is proposed.
Specialist in Pharmaceutical Ethics and Compliance | Educator on medical ethics, law and ABPI Code
5 个月Interested to read the article and your response. We've worked together (though without any payment); I am in pharma and you work with patient organisations. To this author that must mean something bad has taken place but that is just ill-informed prejudice at work. The article just repeats tired old tropes about 'big pharma' with a healthy dose of ignorance (no pens have been handed out for many years). There are of course conflicts to manage but good people working together in the right spirit can do that. As a general point, the media are only interested in articles that confirm prejudices people already hold so whilst I'd love to write an article about the good work we can all do I'm not convinced it would be allowed many column inches
Maximising the impact of patient engagement and advocacy
5 个月She made some valid points but then undermined them by over generalising and implicating bias for any organisation who takes money from pharma for services or otherwise. Thanks for the read Rick Thompson
Executive Director @ International Pemphigus Pemphigoid Foundation
5 个月I also wonder if this is related to the general public sentiment that nonprofits/charities should operate on tiny, shoestring budgets, and that their employees should be able to survive and feed their families on minimal wages.