Until now, Duchenne/Becker and FSHD have been among a broad category of diagnoses in the standard International Classification of Diseases (ICD). 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.
“The lack of an ICD code specific to Duchenne/Becker and FSH muscular dystrophy has proven a barrier to diagnosis, care, surveillance, research, and access” explained Pat Furlong, Founding President & CEO of PPMD. “While we have established surveillance through the passage of the MD-CARE Act, we have also had to develop costly and time-consuming processes to discern Duchenne, Becker and FSH muscular dystrophy cases from those abstracted using previous ICD codes. With approved therapies, payer decisions are now 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. The implementation of these new ICD-10 codes will create a systematic and sizeable impact on the diagnostic, care, research, and outcomes landscapes for our Duchenne/Becker and FSHD communities.”
Over the last two years, PPMD has led an effort to increase the specificity of the ICD-10 codes for the muscular dystrophies. PPMD worked closely with partners in the Center for Disease Control & Prevention’s National Center for Birth Defects and Disabilities (CDC NCBDD), the Centers for Medicare & Medicaid Services (CMS), and the FSH Society.
“This is very important news. It shows the value of the FSH Society’s scientific and policy work with its non-profit and agency partners,” said Daniel Perez, Co-founder & Chief Science Officer of the FSH Society. “Nothing could be more technically specialized from a healthcare perspective than this effort to get an ICD-10 code for each type of primary muscular dystrophy. The benefits down the road for this entire class of muscle diseases will be substantial and this opens up possibilities for greater clinician awareness, outcomes research, and policy.”
Both PPMD and FSH Society are grateful to Dr.