Rare Disease ICD-10 Codes Will Soon be up for Review

According to a story from ALS News Today, ICD-10 disease codes will soon be up for revision in March 2019. What does this mean exactly? Well ICD stands for the International Classification of Disease. The ICD-10 is essentially a list of known diseases that was first introduced by the World Health Organization in 1990. There are nearly 70,000 disease entries on the list.

The codes have become an important part of medicine around the world; the code is a reliable way for doctors define the disease that a patient has. Without a code, they may have to use other codes that describe the symptoms but not the specific disease itself. ICD-10 codes have also been implemented into the insurance system, so having a code is essential for proper reimbursement of physicians and the coverage of patients. The code list is also useful for tracking how many people have the illness, where they are located around the world, and understanding unique disease characteristics. 

The list is managed by the National Center for Health Statistics and the Centers for Medicare & Medicaid Services, two agencies that fall under the Centers for Disease Control and Prevention (CDC). Twice yearly, in March and September, federal officials, disease advocates, and industry reps converge to investigate possible additions and changes to the ICD-10. The next meeting is slated for March 5-6.

Needless to say, as new rare diseases get discovered, one of the first priorities is to get the new disease on the ICD-10, but this has become a challenge in recent years. The CDC often gets swamped with hundreds of code requests as the new diseases get discovered. Getting on the agenda at one of the meetings is critical.

Generally anywhere from 20-25 applications are reviewed per meeting, but this number can get significantly higher. Often getting an approved application requires combined efforts from patient advocates, drug companies, and medical experts.

In May, the World Health Organization is planning to announce an updated version of the list called the ICD-11 in May 2019 during the World Health Assembly. Projected for introduction in 2022, this version will feature improvements such as a simplified coding system, improved usability, and a better system for monitoring disease patterns.