Twenty-Five Years of Community: How Living With CML Has Changed\u2014and Brought Patients Together\u00a0<\/p>\n
Discussion notes from the Second Annual CML Leadership Summit hosted by Novartis<\/p>\n
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.\u00a0<\/p>\n
The CML patient advocacy community has played a vital role in helping those living with this disease\u2014as\u00a0well\u00a0as their\u00a0families\u00a0and\u00a0loved\u00a0ones\u2014 to find support, resources, and connection.<\/p>\n
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.\u00a0<\/p>\n
– Joannie Clements, a CML patient and VP of Mission at CML Buster Foundation<\/p>\n
\u201cIt is vital for patients like myself to have the tools and courage to make our voices heard and ask for what we need,\u201d says Joannie Clements, a CML patient and VP of Mission at CML Buster Foundation, \u201cCollaboration 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.”<\/p>\n
Twenty-Five Years of Support: How We Partner with the CML Advocacy Community\u00a0<\/p>\n
Further\u00a0reinforcing\u00a0this\u00a0collaboration,\u00a0Novartis\u00a0has\u00a0remained\u00a0deeply\u00a0committed\u00a0to\u00a0supporting\u00a0the CML community through long-standing partnerships, global initiatives, and collaborations with patient advocacy groups.<\/p>\n
Last year, Novartis launched the first-ever CML Leadership Summit<\/a> to discuss the challenges and burdens of living with CML. The platform, led by our patient advocacy and medical teams\u2014is designed\u00a0to\u00a0help\u00a0bring\u00a0together\u00a0physician\u00a0and\u00a0patient group\u00a0leaders\u00a0to\u00a0improve\u00a0shared\u00a0decision-making and address communication gaps and barriers between patients and their health care teams.<\/p>\n In\u00a02001,\u00a0Novartis\u00a0partnered with The Max Foundation<\/a> to\u00a0implement\u00a0the\u00a0first direct-to-patient global<\/p>\n treatment\u00a0access\u00a0program.\u00a0The\u00a0following\u00a0year,\u00a0in\u00a02002,\u00a0Novartis\u00a0supported\u00a0the\u00a0first\u00a0New\u00a0Horizons conference, now called CML Horizons, helping bring together patient advocates and laying the foundation for international collaboration.<\/p>\n 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\u2014including representatives from advocacy organizations such as\u00a0CML Buster Foundation<\/a>, Leukemia Research Foundation<\/a>, Cancer Support Community<\/a>,\u00a0CML Advocates Network<\/a>\u00a0and Blood Cancer United,<\/a> formerly The Leukemia & Lymphoma Society (LLS)\u2014Novartis co-developed the CML SDM Quick Guide<\/a>, a resource designed to help patients and care partners engage in shared decision-making earlier in their treatment journeys.\u00a0<\/p>\n 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.<\/p>\n These collective efforts reflect our ongoing commitment to improving clinical practice for people impacted\u00a0by\u00a0CML.\u00a0As\u00a0patient\u00a0needs\u00a0evolve,\u00a0Novartis\u00a0remains\u00a0dedicated\u00a0to\u00a0advancing\u00a0innovation and\u00a0strengthening\u00a0collaboration. Looking\u00a0ahead,\u00a0we aim\u00a0to\u00a0build\u00a0on 25\u00a0years\u00a0of progress\u00a0to\u00a0help meet future challenges and continue supporting the CML community.<\/p>\n","protected":false},"excerpt":{"rendered":"Twenty-Five Years of Community: How Living With CML Has Changed\u2014and Brought Patients Together\u00a0 Discussion notes from the Second…\n","protected":false},"author":2,"featured_media":30721,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_share_on_mastodon":"0"},"categories":[127],"tags":[18511,18509,471,9057,18506,18510,18507,7306,12830,6861,1101,18508,206,265,3752,338,13889,18512,18505,18504],"class_list":["post-30720","post","type-post","status-publish","format-standard","has-post-thumbnail","category-novartis","tag-advancements","tag-advocacy","tag-blood-cancer","tag-chronic","tag-chronic-myeloid-leukemia","tag-clinical-advancements","tag-cml","tag-cultural","tag-health-care","tag-hematology","tag-innovation","tag-leukemia","tag-novartis","tag-oncology","tag-patients","tag-research","tag-targeted-therapy","tag-technological","tag-tki","tag-tyrosine-kinase-inhibitor"],"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@ch\/116216412644372191","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/posts\/30720","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/comments?post=30720"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/posts\/30720\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/media\/30721"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/media?parent=30720"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/categories?post=30720"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ch\/wp-json\/wp\/v2\/tags?post=30720"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}