Patient groups backing drug took £60,000 from pharma firm

BY PAUL HUTCHEON

THREE patient groups that successfully lobbied for a new leukaemia drug to be available on the NHS received more than £60,000 from the pharmaceutical 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, maker of drug Ibrutinib.

Professor David Miller, an academic and transparency campaigner who teaches at Bath University, said the practice of healthcare giants funding groups “distorts” the decision-making process.

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 firms whose profits can be boosted by judgments.

Treatments for blood cancer, skin cancer and high cholesterol were among six new medicines approved by the SMC last week. 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, CLLSA has received around 70 per cent of its funding from pharma firms in the past two years, including Janssen which provided it with a £20,000 grant in 2104 for “summits”, “video materials”, “surveys” and “conferences”. The patient group’s latest accounts state: “The main sources of funds are member 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. Charity chair David Innes denied CLLSA had a conflict of interest: “All Professor David Miller of Bath University says healthcare giants funding groups ‘distorts’ the decisionmaking process our relations with pharmaceutical companies are regulated by the code of the ABPI which specifically rules out any interference by any pharma company.”

Leukaemia Care has benefited from £21,954 from Janssen since 2014. A spokesperson said this amounted to roughly 1.1 per cent of its annual income: “It is important to work collaboratively with all stakeholders with an interest in blood cancers.” Charity Bloodwise has received £20,500 from Janssen since January 2014. It too declared the financial link to the SMC, and denied a conflict of interest, saying: “The grants we received were not in relation to the promotion of any treatment.”

But not only did the three groups make submissions, 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).

Miller said: “Patient groups are increasingly being funded by big pharma 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 based on need and efficacy. Groups with conflicts of interest – effectively industry lobbyists – should be excluded from the process.”

A spokesman for SMC 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.”