Update on ICD Code for Visual Snow Syndrome: Next Phase, MSAC Voting


by Sierra Domb, Founder & CEO, Visual Snow Initiative

This update is a follow-up to a previous article titled “Sierra Domb: ICD Update for Visual Snow Syndrome, Proposal Status, & List of Advocates”.

I am currently working with Dr. Peter Goadsby and Dr. Owen White on the inclusion of Visual Snow Syndrome (VSS) in the ICD-11. Developed and maintained by the World Health Organization (WHO), the International Classification of Diseases, 11th Revision (ICD-11) is a globally recognized system for recording and classifying medical conditions, diseases, and injuries. The ICD is used by healthcare providers, researchers, policymakers, and public health officials worldwide. Its use extends across various domains, including clinical care, research, public health, policy development, and health information management. The ICD contributes to improved healthcare outcomes, global collaboration, and our understanding of health trends worldwide.

If VSS obtains an ICD code, this milestone would have numerous significant, positive outcomes for individuals affected by VSS, as well as the global scientific and medical communities. VSS would finally be solidified as a legally recognized, legitimate, and distinct neurological disorder. In addition, healthcare services related to VSS can become eligible for insurance coverage and reimbursement. Given the high prevalence of marginalization and misdiagnosis, which results in trauma, that most people with VSS have had to endure, this vindication will help establish a brighter future with better healthcare outcomes for VSS patients.

There are layers of bureaucratic steps and hurdles that have to be overcome before any medical condition, disease, or injury can be designated with an ICD code. Many medical conditions never get one, especially if the condition and patient population have a history of being ignored or misunderstood within the medical community. Upon the submission of an ICD proposal by experts in the field, supporting testimonies, thorough reviews, and numerous steps of voting, then it is determined whether or not a code will be given to a specific condition. The WHO oversees the development and maintenance of the ICD, but relies on input from member countries and health professionals.

Current Phase: Medical and Scientific Advisory Committee (MSAC) Review

We recently shared that the ICD-11 proposal for VSS had been submitted and was awaiting review. We are happy to report that our proposal for Visual Snow Syndrome is currently being reviewed and voted on by medical and scientific personnel assigned by the World Health Organization (WHO). The proposal is now being voted on by the Medical and Scientific Advisory Committee (MSAC). If approved, then the proposal will move on to the final phase: being voted on by the Classification and Statistics Advisory Committee (CSAC), who will be the final determiners if VSS gets an ICD code.

We will continue to provide updates throughout the process. Thank you so much for your patience and support.

To review, here are some of the key benefits of obtaining an ICD code:

Benefits of an ICD Code for VSS


Research and Clinical Trials

Researchers use ICD-11 codes to categorize and analyze data in clinical trials and research studies. The use of standardized codes allows for the aggregation of data from multiple sources, supporting the development of evidence-based medicine.

Patient Safety

Accurate and standardized coding using ICD-11 is essential for patient safety. It helps healthcare providers communicate effectively, reducing the risk of errors and ensuring that patients receive appropriate and timely care.

Insurance and Reimbursement

ICD-11 codes are crucial in health insurance reimbursement systems. Proper coding using ICD-11 allows for accurate billing and reimbursement for healthcare services.

Standardized Classification and Coding of Medical Conditions

ICD-11 offers a standardized and internationally recognized system for classifying medical conditions. Having a specific ICD-11 code ensures consistency in how health conditions like VSS are documented and communicated, facilitating a common language among healthcare professionals globally.

Improved Data Accuracy and Clinical Documentation

The use of ICD-11 enhances the precision and specificity of clinical documentation. This is crucial for accurately describing a patient’s health status, facilitating better communication among healthcare providers, maintaining reliable health records, supporting clinical decision-making, contributing to high-quality patient care, and ensuring appropriate reimbursement for healthcare services.

Epidemiological Surveillance and Research

ICD-11 codes play a crucial role in epidemiological surveillance and research. Health organizations and researchers use these codes to track the prevalence, incidence, and distribution of medical conditions over time and across populations. This information is vital for public health planning, interventions resource allocation, and policy development.

Global Health Statistics

ICD-11 is a key tool for generating global health statistics. It helps in comparing health data across countries and regions, facilitating international collaboration and the sharing of health information.

Health Information Systems

ICD-11 is integrated into health information systems and electronic health records (EHRs). Having standardized codes in these systems improves interoperability, data exchange, and the overall efficiency of healthcare information management.

Clinical Decision Support

Healthcare providers use ICD-11 codes to support clinical decision-making. The codes help in accurately documenting a patient’s health condition, which, in turn, assists healthcare professionals in making informed decisions about diagnosis, treatment, and ongoing care.

Public Health Policy and Planning

Governments and healthcare organizations use ICD-11 for public health policy development and planning. It assists in identifying health priorities, allocating resources effectively, and developing strategies to address specific health challenges.

Advancements in Medical Science

ICD is regularly updated to reflect advances in medical science and changes in disease patterns. ICD-11 includes improvements over its predecessor, ICD-10, and is designed to capture the evolving understanding of health conditions.

Click here to learn more and read Sierra’s WHO testimony to get VSS included in ICD-11.