Turning 15,000 voices into NICE policy victory

The target for the campaign was to generate 10,000 e-petition signatures to urge NICE (The National Institute for Health and Care Excellence) to reconsider the route to approval for Tofersen, a life-changing drug for people with SOD1 motor neurone disease (MND).

Tofersen is a drug that has been proven to prevent MND symptoms worsening, and in some cases, reverse symptoms. It's groundbreaking and unbelievably important to people with MND.

NICE had previously declined to appraise the drug as a Highly Specialised Technology (HST) because they didn't classify SOD1 MND as a clinically distinct form of MND. Instead, they planned to appraise it through their standard appraisal route. This created a problem - Tofersen is very expensive and targeted to a very small number of patients, meaning that it had almost zero chance of a successful appraisal through the standard route. However, if they classed it as a HST, the chances of a successful outcome would dramatically improve.

We chose to run petition ads on Facebook and Instagram as there is an active community of people affected by MND and other chronic illnesses who have been supportive of our previous campaigns.

From our extensive experience in the charity sector, we know petitions can perform well with cold audiences as an easy action to take that can make a huge difference.

Our ad copy had to accurately convey the message in simple terms.

We launched with a range of cold and warm audiences across Facebook and Instagram to maximise reach while maintaining message clarity.

Cold audiences:

• Advantage+ (Meta's AI audience targeting that uses its intelligence to find relevant audiences), layered with people who have campaigning interests.
• Lookalike audiences based on MND Association's campaign page visitors and email subscribers.

Warm audiences:

• People who had previously visited MND Association campaign pages.
• Existing email list subscribers.

Our approach balanced educating people about MND and Tofersen with creating urgency around the NICE decision timeline.

We brought our Senior Content Designer in to craft the ad copy, testing both hard-hitting and softer copy, with the softer approach proving most successful:

Motor neurone disease (MND) is a rapidly progressing disease affecting the brain and spinal cord, killing a third of people within a year of diagnosis. MND leaves most people locked in a failing body. Unable to move, unable to talk and eventually, unable to breathe. Currently, there is no cure.

Yet, amongst this hopelessness, there is a glimmer of hope - Tofersen. It's a new treatment that can have an exceptional impact on the lives of people with SOD1 MND, a rare genetic variation, by slowing the progress of the fatal disease.

We built the campaign out using single-image ads, which included four variations optimised for social platforms. These were a deviation from MND Association's normal style of ads, using striking colours and the visual of a vial of "life".

We also optimised related pages to ensure we could capture organic traffic for search terms such as ‘What is the SOD1 gene motor neurone disease?’ and ‘Is Tofersen available in the UK?’

From the outset, explaining MND (particularly to colder audiences), Tofersen, and NICE's regulatory process felt like a significant challenge. We needed to educate audiences about a rare genetic condition, a groundbreaking drug, and complex healthcare approval processes - all within the constraints of noisy social media feeds. In addition, NICE's decision timeline meant we had just weeks to generate significant public pressure.

We were confident that out of the strong visuals and copy, there would be a creative combination that resonated with the public, but we needed to launch quickly with robust A/B testing frameworks. This allowed us to quickly identify the best-performing combinations and reallocate budget to the top performers.

The petition exceeded the target of 10,000 signatures in just three weeks, reaching over 15,000 completions so quickly that we cut the campaign short by a month and spent just 30% of the allocated budget.

Our ads across Facebook and Instagram directly contributed nearly 5,000 of these signatures. The remainder came from organic traffic, which were supported through SEO and email engagement.

Paid media performance:

• Facebook: 4,300 signatures at £0.28 per signature (64% conversion rate)
• Instagram: 496 signatures at £0.37 per signature (62% conversion rate)
• Total paid contribution: 4,796 signatures from £1,522 spend
• Cost efficiency: £0.32 average cost per signature (well below £0.50 target)

On 18 November 2024, NICE announced it would assess the drug through its Highly Specialised Technology route. The campaign played a major role in persuading NICE to change its mind.

What made this particularly effective was delivering 150% of the target a month early, and for less than a third of the budget. People with MND don't have time to wait - every week matters when you're facing a rapidly progressing condition. By achieving results so quickly and efficiently, we increased the chances of people getting access to this life-saving drug.

The efficiency meant MND Association could redirect remaining budget to a follow-up campaign, thanking supporters and recruiting them to MND Association's campaigning network. We surpassed the target of 480 network sign-ups by 13%, achieving 544 sign-ups with a 58.70% click-through rate.

MND Association's mission is "To improve the lives of people with MND today, while building hope for tomorrow." This campaign delivered that in a direct, practical way.

Most importantly, the campaign has given Eleanor Dalley and so many others “time and hope” - two things that felt out of reach before we started.