Beating blood cancer: It takes action

Those were the words of Professor Claire Harrison in 2024. She contacted us with grave news of a worldwide shortage of interferon alpha – a drug she and her colleagues use to treat 2,000 people living with MPN in the UK.

Over the following weeks and months, we contacted NHS England proposing a temporary solution, wrote to clinicians delivering MPN care in Scotland, Wales and Northern Ireland, and developed health information to guide people with MPN as they and their treatment team navigated the shortage.

At an event we organised in Parliament, we got Claire in front of senior decision makers at NHS England, where she was able to tell them directly about the impact of this shortage on the MPN community.

And, after months of persistence, NHS England took up our recommended solution – giving people with blood cancer a way forward until the manufacturing issue was eventually resolved.

Blood cancer takes a person’s time and their energy – that’s even before trying to navigate a shortage of a desperately needed drug. We know what it takes to champion their concerns and find solutions.

As a member of Blood Cancer UK’s Policy and Influencing Team, I’m not in the treatment room or the lab – but I’m in government offices, NHS boardrooms, Westminster, the Senedd, Holyrood and Stormont.

Last year, when the UK Government announced it would be publishing a 10 Year Health Plan and opened a consultation, I worked with the team to submit a written response – ensuring the Plan was shaped by our community.

But policy isn’t just about paperwork – it’s about people. In all the meetings and events we attend, we want the voice of our community to be heard, to make it impossible for people in power to ignore the changes that are needed.

One of my highlights  was when one of our brilliant Ambassadors, Mel, delivered a petition straight to 10 Downing Street on behalf of the One Cancer Voice coalition, which Blood Cancer UK is proud to be part of.

It was a powerful moment.

The voices of thousands of people affected by cancer, including blood cancer, knocking on the Prime Minister’s door. It was more than symbolic, it was a statement: we’re here, we’re united, and we expect action.

In Scotland and Wales right now, we’re writing manifestos for the upcoming Senedd and Holyrood elections next Spring. When newly elected MSs and MSPs take their seats they’ll already know about the challenges the blood cancer community faces and be ready to act on our asks straight away.

At the end of the day, policy changes are still needed. People with blood cancer are still being diagnosed too late or denied access to innovative treatments because of where they live. But we know what it takes to change the policy landscape, so people with blood cancer can live longer, better lives.

Rachel Sandys
Policy and Public Affairs Officer, Blood Cancer UK