All of our voices, together

This was the second juicy session on policy and campaigning at the NSPKU 2024 conference. The political landscape in the UK has changed dramatically since the presentation, meaning Kate Learoyd and Caroline Graham’s rallying cry carries more importance.

People living with PKU, and their families & friends, are often more experienced at campaigning than they think!

The fight for sapropterin

The fight for sapropterin (Kuvan) took 11 years, and the jumbled roll-out has left both jubilation and disappointment across the country. Research into new treatments continues (more here), and the PKU community may need to fight again for access to new treatments. There is certainly a case to advocate for fair access to the treatments and support currently available.

Kate and Caroline compared campaigning for PKU to living with PKU:

• working within a system which doesn’t accommodate you,
• having to explain PKU at every turn
• a need to advocate for support and treatment

This means that people living with PKU, and their families & friends, are often more experienced at campaigning than they think!

Lessons for future campaigns

The fight for sapropterin means the NSPKU team now know a great deal about the licensing process. This bodes well for future campaigns. As does the experience, which shows that the advocacy of patients tipped the balance.

5 key lessons learned

• Honest campaigning from home is powerful.
• Don’t be ashamed, don’t be invisible, don’t be silent.
• Awareness of PKU is not enough
• Respect different experiences of PKU
• We don’t know enough about PKU.

The advocacy of patients tipped the balance.

A campaign case study

Kate and Caroline discussed the need to maintain and build on the relationships and connections made during the long sapropterin campaign. Politicians are the first advocates for local campaigns and are there to work for their constituents. This means that relationships with politicians and policymakers are critical.

Chris Cassidy organised a patient-led campaign for access to sapropterin in Northern Ireland. Politics in Northern Ireland is rarely simple, and has been in upheaval over the last few years. Chris navigated this and brought MPs and Members of the Legislative Assembly from all parties together to work with and support the PKU community. A fantastic example of the work which can be done in difficult circumstances. As a result of his campaign, the people of Northern Ireland got access to sapropterin despite the Northern Ireland Assembly being closed.

PKU in Parliament

As I write this in July 2024, a record number of over 350 new MPs are being inducted into the UK Parliament. Each one is a potential new advocate for PKU. There is an All Party Parliamentary Group (APPG) for PKU, which played a critical role in the fight for sapropterin.

As Kate said, “APPG’s are not about politics. MPs leave that at the door and work for their constituents.” We can write to our MPs and ask them to join, or remain in, the APPG for PKU.

This is how the campaign for sapropterin started, with patients writing to their MPs asking for help. Please do the same now, as the PKU community is stronger when we fight together, and our voices are being heard.

As the NSPKU team said: “We cannot be invisible again.”

What does the NSPKU do?

(YouTube Video) https://www.youtube.com/watch?v=QP9t-DIFhRk