Biogen: internal fundraising email linked SMA charity donations to pressuring NHS/NICE on Spinraza (AUTH/3575/11/21)

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Key facts

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Case number	AUTH/3575/11/21
Complainant	Anonymous, non-contactable ex-employee
Company	Biogen Idec Limited
Product referenced	Spinraza (nusinersen sodium)
Therapy area	Spinal Muscular Atrophy (SMA)
Issue	Internal email encouraging staff donations to SMA charities and linking fundraising to “partner[ing]… to put pressure on the NHS” to release funding after a negative NICE decision
Applicable Code	2016
Breach clauses	Clause 2; Clause 9.1
Sanctions	Undertaking received; Additional sanctions: Advertisement
Complaint received	5 November 2021
Case completed	7 September 2022
Appeal	No appeal

Reviewed by Dr Anzal Qurbain (FFPM) — ABPI Final Signatory

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An anonymous ex-employee complained about a local senior leader’s conduct in 2018 (the individual had since left Biogen).
The complainant provided an internal email sent to a broad “site team” audience headed “Important – Please read: We can do better than this!” encouraging staff to “go deeper with your giving” to UK and Ireland SMA charities.
The email described the charities as “partner[ing] with” Biogen “to put pressure on the NHS to release funding for nusinersen” and referred to Spinraza as Biogen’s “breakthrough drug”.
The email referenced media coverage and included links/attachments about the negative NICE decision (including an article titled “SMA Groups Outraged Over UK Rejection of Spinraza Coverage as Too Expensive”).
The email referred to donations as “a gift from Biogen”, cited that only £66 had been raised so far, and set a target of £2000 (suggesting “each of us giving £10”).
Biogen argued the fundraising was employee-led, in a private capacity, with personal funds; Biogen said it did not initiate/organise the activity and made no donation or matching contribution.
The Panel found the fundraising fell within the scope of the Code due to multiple references to Biogen Idec on the JustGiving page and company facilitation (including internal collection tins at a “Month End Lunch” and broad internal encouragement).

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Breach of Clause 9.1 (2016 Code) ruled: failure to maintain high standards.
Breach of Clause 2 (2016 Code) ruled: bringing discredit upon and reducing confidence in the pharmaceutical industry (a sign of particular censure).
No appeal.

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