Exposing drug industry funding of UK patient organisationsBMJ 2019; 365 doi: https://doi.org/10.1136/bmj.l1806 (Published 22 May 2019) Cite this as: BMJ 2019;365:l1806
All rapid responses
Response to Mr Simon H Ridley, Director of Research, Myeloma UK
1) Thank you for reading our paper and offering your detailed comments.
2) The purpose of our paper was to contribute towards improving the transparency of financial relationships between the pharmaceutical industry and patient organisations, and your kind reply clearly demonstrates your commitment to achieving this goal.
3) Unlike most of the published research we put an emphasis on improving the transparency on the side of donors (and not patient organisations) as the former have greater resources and experience in this area, in the form of, in particular, industry codes of conduct and the Disclosure UK database covering healthcare professionals and organisations.
4) As explained in the paper (Web Supplement 3, footnote c), our research methodology assumed that we identified the recipients and amounts of funding based on specific columns in drug company disclosure reports. The amount of funding we reported as being received by Myeloma UK (without inflation-adjustment) was taken from the following report published by Takeda - https://www.takeda.com/en-gb/corporate-responsibility/transparency/patie...
5) Given the number of companies we considered in our sample (>100), the number of payment disclosure reports (>2000), and the number of individual payments (>5000), we were in no position to check payments against financial records held by the recipients of funding. This is something that will be possible - to a certain extent - as part of a follow-up research project on which we are currently working.
6) We are well aware that the exact modes in which any given amount of funding is distributed between its main recipient, again, as reported by the donor, and any other collaborating organisations that may be involved in the funded activity(ies) may be subject to unique arrangements. We also noted this as something we considered in Web Supplement 3, footnote c. In any case, this is a very important policy matter, which, we believe, deserves a separate in-depth discussion, and we would encourage the Association of the British Pharmaceutical Industry (ABPI) and the European Federation of Pharmaceutical Industries and Associations (EFPIA) to reflect on this issue in light of the existing practice, which has been demonstrated by our paper. As we note in its concluding section, the current payment disclosure system is in need of standardisation, which could include, we believe, noting whether and in what ways specific amounts of funding are distributed among and/or subcontracted to different organisations that may be involved in addition to the main reported recipient. This should be accompanied by a note describing the extent of control over this process by the donor.
7) If the improvements described above are introduced (preferably retrospectively) our database could be reanalysed in light of the new types of data that would become available.
8) Thank you, once again, for providing your valuable feedback.
Competing interests: No competing interests
This article by Ozieranski et al published on 22 May 2019 in the BMJ online entitled ‘Exposing drug industry funding of UK patient organisations’ makes reference to Myeloma UK receiving £5,924,160 from Takeda in 2016 for ‘financial support and provision of investigational product for the conduct of an investigator initiated clinical trial in the Myeloma UK Clinical Trial Network’. The origin of this large figure does not reflect the actual funding of Myeloma UK by Takeda.
As a charity with a strong research focus, Myeloma UK has worked with patients, clinicians, and Pharma companies to enable the funding and delivery of innovative clinical trials which address important aspects of unmet patient need, utilising medications often routinely unavailable to UK myeloma patients. This has been achieved through a portfolio of (academic) investigator-initiated trials which require funding and provision of costly drugs from Pharma companies. The trial in question, MUK Eight, is one such example.
In 2016, Takeda contracted with Myeloma UK to fund the delivery of MUK Eight through Myeloma UK’s (academic) Clinical Trial Network. The value of this contract was £862,308 (inclusive of VAT). The total amount actually received by Myeloma UK from Takeda for MUK Eight was £371,272. In fact, over the course of the MUK Eight trial, the actual cost of the trial to Myeloma UK significantly exceeded this amount. The remaining difference of £5,552,888 contributed to MUK Eight in the form of trial drugs provided in-kind by Takeda to the trial sites. However, this was not the amount of money received by Myeloma UK.
Myeloma UK has worked with separate Pharma companies for the funding and delivery of other trials within its Clinical Trials Network, but has not profited financially from them either. However, this article by Ozieranski et al. which was referenced in the Independent on 23 May 2019 rightly highlights a need for transparency in these matters, which Myeloma UK adheres to, and agrees with.
Competing interests: I am employed by Myeloma UK. Myeloma UK's income sources include Pharma and diagnostic companies.