Twenty-Five Years of Community: How Living With CML Has Changed—and Brought Patients Together 

Discussion notes from the Second Annual CML Leadership Summit hosted by Novartis

Over the last two decades, patients’ needs drove continued innovations in TKI therapy for CML treatment. Social media emerged as a vital space where patients and caregivers could share experiences, learn from and support each other. This level of engagement has reshaped what it means to live with CML since the turn of the century. 

The CML patient advocacy community has played a vital role in helping those living with this disease—as well as their families and loved ones— to find support, resources, and connection.

Collaboration among advocacy groups, patients, health care teams, and all those involved in delivering and supporting care is what truly drives best practices for improved patient care, better treatment decisions, and meaningful progress. 

– Joannie Clements, a CML patient and VP of Mission at CML Buster Foundation

“It is vital for patients like myself to have the tools and courage to make our voices heard and ask for what we need,” says Joannie Clements, a CML patient and VP of Mission at CML Buster Foundation, “Collaboration among advocacy groups, patients, health care teams, and all those involved in delivering and supporting care is what truly drives best practices for improved patient care, better treatment decisions, and meaningful progress.”

Twenty-Five Years of Support: How We Partner with the CML Advocacy Community 

Further reinforcing this collaboration, Novartis has remained deeply committed to supporting the CML community through long-standing partnerships, global initiatives, and collaborations with patient advocacy groups.

Last year, Novartis launched the first-ever CML Leadership Summit to discuss the challenges and burdens of living with CML. The platform, led by our patient advocacy and medical teams—is designed to help bring together physician and patient group leaders to improve shared decision-making and address communication gaps and barriers between patients and their health care teams.

In 2001, Novartis partnered with The Max Foundation to implement the first direct-to-patient global

treatment access program. The following year, in 2002, Novartis supported the first New Horizons conference, now called CML Horizons, helping bring together patient advocates and laying the foundation for international collaboration.

More recently, as part of an ongoing commitment to patient-centered innovation, Novartis established the Shared Decision-Making (SDM) Patient Advocate Council to better understand and address the evolving needs of people living with CML. In close collaboration with council members—including representatives from advocacy organizations such as CML Buster Foundation, Leukemia Research Foundation, Cancer Support Community, CML Advocates Network and Blood Cancer United, formerly The Leukemia & Lymphoma Society (LLS)—Novartis co-developed the CML SDM Quick Guide, a resource designed to help patients and care partners engage in shared decision-making earlier in their treatment journeys. 

Initiated in 2024, the SDM Patient Advocate Council is a multi-year effort that brings together advocacy leaders and patients to shape meaningful and accessible content for the CML community. Available in both print and digital formats, the CML SDM Quick Guide introduces a patient-friendly definition of SDM and includes links to a curated library of tools, organizations, and support networks. By offering clear, accessible pathways to existing resources, it empowers individuals to navigate their options, ask informed questions, and advocate for improved care.

These collective efforts reflect our ongoing commitment to improving clinical practice for people impacted by CML. As patient needs evolve, Novartis remains dedicated to advancing innovation and strengthening collaboration. Looking ahead, we aim to build on 25 years of progress to help meet future challenges and continue supporting the CML community.