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Susan G. Komen® Announces Major Step Toward Greater Recognition of Inflammatory Breast Cancer

via Business Wire

New Diagnosis Codes Improve Timely Access to Care and Advance Data Available on Aggressive and Deadly Disease

Susan G. Komen®, the world’s leading breast cancer organization, announced a major step forward in its work to detect, treat and better understand the prevalence of Inflammatory Breast Cancer (IBC). As a result of Komen’s commitment to conquering aggressive and deadly cancers, and its longstanding support of the IBC community, Komen and its collaboration partners have secured three new ICD-10-CM (International Classification of Disease, Tenth Revision, Clinical Modification) diagnosis codes for IBC, from the Centers for Disease Control and Prevention.

“This is the culmination of nearly a decade of leadership by Komen and our colleagues at the Inflammatory Breast Cancer Research Foundation (IBCRF) and the Milburn Foundation to bring experts together to define IBC, increase diagnosis accuracy and advocate for the tools health care providers need to support patients who are diagnosed with an uncommon form of breast cancer,” said Victoria Smart, senior vice president of Mission at Susan G. Komen. “The tireless work of patients, advocates, clinicians and researchers has brought critical attention to IBC and allowed us to make meaningful progress in research and treatment developments that are needed to save lives.”

IBC is among the most aggressive types of breast cancer, and it progresses quickly, within weeks to months. Despite its severity, IBC is often under recognized and misdiagnosed because it doesn’t typically present as a lump. The main warning signs of IBC are swelling, redness in the breast and skin thickening, and it may not be detected on a mammogram. All of these contribute to IBC being improperly diagnosed as a rash, mastitis or skin condition, further delaying a proper diagnosis and contributing to the already poor prognosis associated with the disease. By the time patients are properly diagnosed, the cancer has often spread beyond the breast, making it more difficult to treat.

A lack of diagnostic criteria and diagnosis codes for IBC have hindered patient care and the advancement of research for decades. To address these and other critical IBC needs, Komen partnered with IBCRF and Milburn Foundation in 2016, to form the IBC Collaborative, a team of leading breast cancer experts including clinicians, researchers and IBC patients.

“This achievement showcases the power of collaboration”, said Bryon Davis, CEO of the Milburn Foundation. “When organizations unite around a shared mission, challenges like the longstanding need for IBC diagnostic codes can be overcome. This allows patient care to move forward in ways that simply would not have been possible otherwise.”

In 2022, the IBC Collaborative announced the creation of a new IBC scoring system, a first-of-its kind system to help health care providers distinguish IBC from other forms of breast cancer, increase accurate diagnosis and guide treatment decisions. Komen invested $700,000 in grants, funded in part by Komen’s collaboration partners, to world-renowned breast cancer researchers, from two of the largest IBC centers in the world, to validate and optimize the IBC Scoring System. In 2023, the system was made available as an easy-to-use online tool through Susan G. Komen and has been accessed more than 5,700 times in more than 100 countries across the globe. The availability of the scoring system and tool paved the way for Komen-led advocacy efforts requesting diagnostic codes be established for IBC.

Historically, IBC hasn’t been clearly or consistently defined in medical records. The new diagnosis codes, C50.A0, C50.A1 and C50.A2, for IBC should enable better disease documentation, helping patients to start essential treatment sooner, supporting coordinated care and helping insurance claims go through with fewer delays. Through standardized coding of IBC, researchers can more easily gather information on how common it is, who it affects, and how people respond to treatment – helping them find ways to improve care. Crucially, the codes can help more people be included in clinical trials and other research, which could lead to new treatment options in the future.

“This is a historic moment for IBC patients,” said Ginny Mason, a 25-year patient advocate and Executive Director of Inflammatory Breast Cancer Research Foundation (IBCRF). “For too long, IBC has been misunderstood and misdiagnosed. The new diagnostic codes are a critical step toward understanding how many cases truly exist for this distinct form of breast cancer and helping patients get the care they need faster.”

The diagnostic codes will go into effect on Oct. 1, 2025.

About Susan G. Komen®

Susan G. Komen® is the world’s leading nonprofit breast cancer organization, working to save lives and end breast cancer forever. Komen has an unmatched, comprehensive 360-degree approach to fighting this disease across all fronts and supporting millions of people in the U.S. and in countries worldwide. We advocate for patients, drive research breakthroughs, improve access to high-quality care, offer direct patient support and empower people with trustworthy information. Founded by Nancy G. Brinker, who promised her sister, Susan G. Komen, that she would end the disease that claimed Suzy’s life, Komen remains committed to supporting those affected by breast cancer today, while tirelessly searching for tomorrow’s cures. Visit komen.org or call 1-877 GO KOMEN. Connect with us on social at www.komen.org/contact-us/follow-us/.

About Inflammatory Breast Cancer (IBC) Research Foundation

Since 1999 the Inflammatory Breast Cancer Research Foundation (IBCRF) has been the patient voice for inflammatory breast cancer (IBC) through advocacy and action. By fostering innovative research, creatively educating stakeholders, and advocating for both patients and IBC survivors, we continue to lead improvements for patients. IBCRF relies on its dedicated volunteers and Medical Advisory Board to guide patient-focused IBC research resulting in new discoveries, including clinical trials. Learn more at www.ibcresearch.org or call 1-877-stop ibc. On social media? Join us on Facebook and Twitter (@IBCResearch).

About Milburn Foundation®

The Milburn Foundation is committed to accelerating progress in research by breaking down barriers through an activist philanthropy model. By uniting public policy, nonprofits, and the private sector, the Foundation drives meaningful advancements in Breast Cancer and Frontotemporal Degeneration research. With a proud legacy of supporting groundbreaking efforts in Inflammatory Breast Cancer (IBC) and Triple Negative Breast Cancer, we collaborate with organizations of all sizes to achieve bold, measurable outcomes. Recognized with multiple awards for our impact, we continue to redefine what’s possible in the fight against these diseases. Learn more about our mission and initiatives at themilburnfoundation.org.

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