THREE patient groups that successfully lobbied for a new leukaemia drug to be on the NHS received over £60,000 from the pharma firm behind the product.
One of the charities relies on Big Pharma for 70 per cent of its funding and has a trustee with financial links to Janssen-Cilag, which manufactures the Ibrutinib drug.
Professor David Miller, an academic who is also a transparency campaigner, said the practice of healthcare giants funding these groups “distorts” the decision-making process.
Loading article content
The Scottish Medicines Consortium (SMC) is the NHS organisation that decides on whether new treatments can be recommended for use north of the border.
Its decisions are crucial for patients, but also for pharma companies whose profits can be boosted by SMC judgements.
Treatments for blood cancer, skin cancer and high cholesterol were last week among six new medicines publicised by the SMC as being approved. However, although the decisions will benefit some patients, the role played by patient groups during the SMC process is again being questioned. In the case of Ibrutinib, Leukaemia Care, the Chronic Lymphocytic Leukaemia Support Association (CLLSA) and Bloodwise made formal submissions in relation to the capsules.
According to the SMC assessment, the CLLSA has received approximately 70 per cent of its funding from pharma firms in the past two years, including from Janssen.
The company provided the CLLSA with a £20,000 grant in 2104 for “summits”, “video materials”, “surveys” and “conferences”.
The patient group’s latest accounts state: “Main source of funds are from members donations and grants from pharmaceutical companies.”
One listed CLLSA trustee is Dr Samir Agrawal, who has declared around £2,000 in travel, accommodation and registration fees from Janssen on the Association of the British Pharmaceutical Industry disclosure website.
However, charity chair David Innes denied the CLLSA had a conflict of interest: “All our relations with pharmaceutical companies are regulated by the code of the ABPI. This code specifically rules out any interference in our affairs by any pharma company.”
Leukaemia Care has benefited from £21,954 from Janssen since 2014. A spokesperson said this sum amounted to roughly 1.1% of the charity’s annual income.
He added: “As a charity providing information and support to anybody affected by blood cancer, we recognise the importance of working collaboratively with all stakeholders with an interest in blood cancers. We work closely with key players in the blood cancer field – including the NHS, the Department of Health, medical professionals, other charities and the pharmaceutical industry.”
Bloodwise, another charity in the same field, has received £20,500 from Janssen since January 2014. As with the two other patient groups, the financial link was declared to the SMC.
A spokesperson for Bloodwise also denied a conflict of interest: “The grants we received were not in relation to the promotion of any treatment, and such practice is not permitted by the codes of conduct that govern joint activity between the pharmaceutical industry and patient groups, as set out by the Association of the British Pharmaceutical Industry.”
However, not only did the three groups make submissions, but they also played a special role in the SMC process. The SMC recently created a new stage in its assessment procedure – the Patient and Clinician Engagement (PACE). Representatives from each patient group participated in the PACE meeting.
Miller, who teaches sociology at Bath University, said: “Patient groups are increasingly being funded by big pharma to act as third-party supporters – sometimes called front groups – to distort the decision-making process by claiming that there are independent voices calling for drugs to be approved. The approval of drugs for the health service should be made on grounds of need and efficacy and groups with conflicts of interest – effectively lobbyists for industry – should be excluded from the process.”
An SMC spokesman said: “Details of all pharma funding received by patient groups who make submissions on medicines we are reviewing are fully declared as part of our processes.”
A spokesperson for Janssen said: "At Janssen, we partner with a wide range of stakeholders and organisations, including patient groups, to grow our understanding of the needs of patients and their families. We believe in absolute transparency to help build trust and understanding around these important relationships, which are critical to the future of medical innovation."