New Diagnosis Codes Improve Timely Access Inflammatory Breast Cancer Care

Susan G. Komen is marking a significant milestone in the effort to improve care and outcomes for people facing inflammatory breast cancer (IBC), thanks to years of grant-supported research, advances in disease diagnosis, and advocacy led by Komen and its partners.

Already approved by the Centers for Disease Control and Prevention, these specific diagnosis codes for this aggressive and often misdiagnosed form of breast cancer will go into effect starting Oct. 1, 2025. These new codes will enable better disease documentation, helping patients begin treatment sooner without unnecessary delays. They will also allow researchers to collect better data on how many people are affected by IBC, how the disease progresses and which treatments are most effective.

IBC, Historically

IBC is one of the most aggressive forms of breast cancer. Unlike other breast cancers, it rarely presents as a lump. Instead, patients often notice swelling, redness or skin thickening. These symptoms can be mistaken for infections or skin conditions, often leading to misdiagnosis and delayed treatment. For decades, the lack of clear diagnostic criteria and specific medical codes for IBC has created barriers to timely care. Without the proper tools to identify IBC, health care providers have struggled to distinguish it from other conditions. Patients often do not receive a correct diagnosis until the cancer has already spread beyond the breast, contributing to a more advanced stage and making it more difficult to treat.

The Power of Collaboration

Recognizing the urgent need to address these challenges, Komen joined forces with the Inflammatory Breast Cancer Research Foundation (IBCRF) and the Milburn Foundation to form the IBC Collaborative in 2016. This group brought together clinicians, researchers, patients and advocates to push for change.

One of the collaborative’s most significant accomplishments was the creation of the IBC Scoring System, which was converted into an accessible online tool for clinicians in 2023. This online tool helps doctors more easily identify IBC and guide treatment decisions. Supported by a $700,000 investment from Komen and its partners, the scoring system has been validated and used more than 7,500 times in over 100 countries.

The success of this tool set the stage for a major advocacy push to establish dedicated diagnosis codes for IBC. The new codes — C50.A0, C50.A1 and C50.A2 — will allow for more accurate medical records, better care coordination and smoother insurance processes.

“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.” - Victoria Smart, senior vice president of mission at Susan G. Komen

What Comes Next

Once the new codes go into effect on Oct. 1, they will make it easier for health care providers to document IBC, ensuring

patients can begin the right treatments faster. The codes will also support clinical research by helping experts track how many people are affected, who is most at risk and how different treatments perform.

“This is a historic moment for IBC patients,” said Ginny Mason, an IBC survivor, executive director of IBCRF and

a 25-year patient advocate. “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.”

Komen and its partners remain committed to driving research, improving diagnosis and supporting patients living with IBC. This progress marks an important step toward better outcomes and saving lives.

Shannon Woodworth is the senior manager of program content at Susan G. Komen.

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