Why CML-CABs?

Here at CML-CAB, we know that research is key towards better outcomes, but often the trials are done without patient input, do not deliver on unmet needs, do not deliver patient-relevant data (e.g. PRO, QoL), are run in the wrong countries and do not recruit. This is why it is imperative to involve patients at the start of conversations and include their experience to make treatment better.

• Care pathways are often not reflecting true patient needs and real-life situations. For example, theRofecoix – Merck scandal which caused unnecessary deaths and the ultimate withdrawal of the drug. (Failing the Public Health — Rofecoxib, Merck, and the FDA | New England Journal of Medicine)
• Access to treatment and monitoring is often suboptimal or non-existent – focus on the “most attractive markets”, not on hugest unmet need (e.g. low/middle income countries) For example, India and LATAM face excessive financial barriers when it comes to cancer treatments. (Financial toxicity of cancer treatment in India: towards closing the cancer care gap – PMC)
• Pharma advisory boards are often not meaningful, have little impact on decisions and direction, barely provide reports or follow-up
• Patient centricity is often mainly a mission statement, not where the difficult decisions are made

Here at CML-CAB, our objectives and strategic priorities are:

• Providing CML stakeholders (researchers, academics, government, policy makers, authorities, and pharmaceutical industry) with advice and input on different issues that can ultimately impact patients’ lives.
• Promoting best-in-class CML research as well as the harmonisation of good clinical practice, standard of care and access to best available CML therapies and diagnostic tools.
• Ensuring patient needs are considered when setting research priorities.
• Supporting in the development of patient-friendly clinical trials and helping interested patients access these.
• Addressing problems CML patients face in accessing optimal diagnosis, monitoring, treatment, and care throughout their CML journey.
• Contributing to improving the CML patient outcomes.
• Improving patients´ quality of life (QoL) through these interactions with CML stakeholders
• Improving the quality of information and education.
• Building CML advocacy community capacity.

Strategic priorities for the CAB