Today at 12:01 AM  – while most of us were sound asleep – the International Classification of Diseases (ICD) code for Duchenne/Becker muscular dystrophy changed. 

Previously, Duchenne muscular dystrophy was classified among a broad category or diagnoses in the standard International Classification of Diseases (ICD).

In 2016, PPMD convened key federal agency and clinical partners to support the development of a nomination to expand the current classification category (ICD10 G71.0) to enable specific identification of Duchenne/Becker muscular dystrophy.

What’s an ICD code?

The International Classification of Diseases (ICD) is the foundation for the identification of health trends and statistics, and the international standard for reporting diseases and health conditions. Owned, developed, and published by the World Health Organization (WHO), it is the diagnostic classification standard for all clinical and research purposes.

The healthcare industry, clinical providers, IT professionals, data administrators, insurance providers, government agencies, and many other stakeholders utilize ICD codes to properly populate electronic health records, track epidemiological trends, and support medical reimbursement decisions. Uses of the ICD codes also include retrieval and analysis of health information for evidence-based decision making; monitoring of the incidence and prevalence of diseases; observing reimbursements trends; and tracking of longitudinal outcomes and adherence to care guidelines.

Why refine the ICD code for Duchenne/Becker MD?

The lack of an ICD code specific to Duchenne has proven a barrier to diagnosis, care, surveillance, research, and access. Payer decisions are being impacted as over-estimates of economic impacts are made when applying the calculations to their datasets. And while care standards have been established, CDC has been unable to assess whether those standards are being implemented.

A Code Change, Several Years in the Making

Over the past three years, PPMD convened our partners at the CDC and other clinical stakeholders, met frequently with members of the ICD-10 Coordination and Maintenance Committee, and developed and led an action plan to assemble the evidence necessary to support a nomination of the expansion of the current classification category (ICD10 G71.0) to enable to specific identification of Duchenne/Becker muscular dystrophy.

As the evidence for the refinement of the Duchenne/Becker ICD-10 code was developed, it was discovered that the evidence also supported a refinement of the ICD-10 code Facioscapulohumeral muscular dystrophy (FSHD). PPMD’s leadership reached out to the leadership of the FSH Society and began expanded the nomination effort to include the nomination of a new code for FSHD, in addition to Duchenne/Becker. Alphabetic indexing and mapping of all codes included expertise from epidemiologists from New York State.

PPMD submitted our proposed draft codes to the ICD-10 Coordination and Maintenance Committee in July of 2017, along with letters of support from the global clinical/scientific community and the global patient advocacy organizations. The codes were accepted for full presentation and further review at the ICD-10 Coordination and Maintenance Committee Hearing in September of 2017. Following the presentation to the Committee, a public comment period extended through December of 2017 and in January 2018 we were notified that the proposed codes had been accepted for CMS coding amendment beginning in FY 2019 on October 1, 2018 — TODAY!

Thank you to Joel Wood and Foundation to Eradicate Duchenne for their unwavering support during this process!

Looking Ahead

PPMD has been working with our clinical and industry partners to alert them to the updated ICD-10 code. While it will take time for the new codes to fully impact our ability to streamline surveillance and access efforts, we are anticipating that the new code will aid to eliminate barriers to diagnosis, care, surveillance, research, and access.