Advancing Access: Tools to Strengthen Patient Advocacy and Access Initiatives

MPN United Webinar Series – August 25, 2026

This session explores barriers to equitable access to MPN treatments and clinical trials and highlights practical strategies that patient advocates can use to strengthen evidence-based advocacy efforts. Participants will learn about tools and approaches to support treatment access, improve clinical trial participation, and advance patient-centered research and policy initiatives at the local, regional, and global levels.

Key Learning Objectives:

• Describe key barriers contributing to inequitable access to MPN treatments and clinical trials within and between different countries and health systems.
• Explain the purpose and structure of the MPN Access to Medicines Toolkit and its role in strengthening patient-led, evidence-based advocacy efforts.
• Identify advocacy strategies that can support access to emerging treatments through compassionate use and managed access programs.
• Outline how patient-centered evidence generation can inform and shape clinical trial design that works for all stakeholders and enhance future treatment access and policy decisions.
• Explore next steps and tools for advancing local, regional, and global efforts to improve access to MPN treatments and clinical trials.

Speaker:
Eric Low, OBE

Founder, Frontiers in MPNs

Eric Low, OBE has worked in medical research, health technology appraisal, market access, health policy, and patient organizations for more than 30 years. He founded Myeloma UK in 1996 and led the organization as Chief Executive until 2017, helping advance research, treatment development, patient support, and access to new therapies. In 2017, he established ELC, a specialist consultancy focused on health technology assessment, market access, healthcare policy, and patient engagement. Eric has a strong track record of building multi-stakeholder collaborations, influencing policy, and developing innovative solutions to improve patient outcomes. He was awarded an OBE (Officer of the Order of the British Empire) for services to charity in 2012.

Best Practice Spotlight

Organization: MPN España
Presenter: Monica Perez
Presentation: Wall of Hope

Presenter:
Monica Perez, MPN Patient Advocate & Secretary, MPN España

Monica is a Patient Advocate and Secretary of MPN España, the Spanish association for people affected by myeloproliferative neoplasms. Her journey into advocacy began when her eldest son was diagnosed with myelofibrosis at the age of 16; he is now 23. Determined to support him and the wider community of patients living with this rare disease, Monica and her husband, Ramon Tortosa, now Vice President of MPN España, became active voices for the MPN patient community. Together, they joined the organization’s steering committee, where Monica has worked to raise awareness, strengthen patient support, and advocate for improved access to care for MPN patients and their families across Spain and internationally.

Key Learnings:

1. The power of a simple, visible symbol, the Wall of Hope, to break barriers and engage decision-makers.
2. The importance of consistent follow-up to transform symbolic gestures into concrete actions.
3. The need for regional and national advocacy to achieve sustainable progress.
4. Building trust across political parties helps create more durable commitment and support.
5. This advocacy model can be replicated globally to amplify patient voices and influence decision-making.