“I, like most patient advocates, didn't grow up wanting to become a patient advocate. The reason I ended up in patient advocacy was that in 2011 my husband was diagnosed with metastatic melanoma and died of it in less than a year.”
These are the words of Bettina Ryll, founder of Melanoma Patient Network Europe and Vice-Chair of the Access to Novel Medicines Platform (NMP) Working Group 3 (WG3) on sustainability.
“He passed just before the new therapies came through. He was actually on several clinical trials with these new therapies that now have transformed the disease from one where the 5-year survival rate in the metastatic setting was below 5% to one where more patients have reported survival,” Bettina explains.
As of today, a number of novel therapies to treat melanoma are available, but, unfortunately, they are not accessible to everyone.
“Novel medicines hold immense promise, but often come with a high price tag, making it challenging for health-care systems to adopt them. I personally find it unacceptable that we possess life-saving treatments yet struggle to make them accessible,” Bettina adds.
“The lesson I've learned is that there's a systemic misalignment. We need a neutral space where stakeholders can collaborate without fear of blame, focusing instead on finding solutions that benefit everyone involved.”
How do we ensure sustainable access?
Achieving universal health coverage means ensuring sustainable access to novel, high-priced medicines. WHO/Europe is working with different stakeholders through the NMP – a neutral space for patients and representatives of industry, civil society, governments and other stakeholders – to convene and discuss solutions to achieve this.
In March 2024, the NMP convened stakeholders in Manchester, United Kingdom, at the National Institute for Health and Care Excellence (NICE) for the first in-person meeting of WG3.
“The United Kingdom Department of Health and Social Care is grateful to WHO for its work on the NMP and to NICE for chairing one of the key working groups. The new NMP adheres to the objectives laid out in our global health framework of 2023, including on science and technology,” noted Matt Harpur, Deputy Director for Multilateral and G7/G20 Engagement at the Department of Health and Social Care.
“We must begin with the end in mind,” explained Meindert Boysen, Chair of WG3 and Head of International Affairs at NICE. “Patients are seeking to have access across the European Region to novel, high-cost medicines, and they can only get that if stakeholders across the spectrum work together, on the basis of transparency, solidarity and sustainability.”
Members of WG3 discussed how the sustainability of health systems could be improved for all stakeholders, and made concrete proposals for joint work on case studies and demonstration projects – discrete building blocks aligned within a dynamic system.
Next steps
Natasha Azzopardi-Muscat, Director of WHO/Europe’s Division of Country Health Policies and Systems, emphasizes, “While convening all the stakeholders is an important contribution in its own right, we are keen that the NMP does not simply serve as a forum for discussion. Rather, we remain hopeful that it delivers workable proposals that reflect areas of potential collaboration among the stakeholders.”
On 2–3 July 2024, the NMP will bring together stakeholders from across the WHO European Region for consensus building. That gathering will provide all working groups with the opportunity to share their draft proposals with each other and the wider NMP platform, allowing for consultation and prioritization by all stakeholders. All prioritized proposals and deliverables that focus on demonstration projects will then act as proofs of concept for future scale-up and implementation across the Region.