FOR IMMEDIATE RELEASE
Today marks a huge leap forward for the leukodystrophy community with the adoption of twelve new diagnostic definitions through the International Classification of Diseases – Tenth Revision. The ICD-10 code system is used by the health field to classify diagnoses, symptoms, and procedures for claims processing. While this system is largely used when it comes to insurance billing, it is also extremely useful for the health care system as a whole. The ICD-10 system is leveraged by physicians and researchers all over the world to track diseases, severity of progression, treatment outcomes, and more. Ultimately having these twelve new codes will result in faster diagnosis, more thorough treatment plans, and overall improved quality of life for patients currently affected and all who are diagnosed with leukodystrophies in the future.
To have twelve codes awarded at one time is simply unheard of considering how difficult it can be to obtain even one, but thanks to the unyielding dedication of Dr. Joshua Bonkowsky (University of Utah Health and Intermountain Primary Children’s Hospital) and Monika Baker (University of Utah MD/PhD Student), the leukodystrophy community now enters a new era. You can read more about the journey to obtain the codes on the University of Utah Health’s website: https://uofuhealth.utah.edu/newsroom/news/2023/09/twelve-numbers-will-change-lives
Diagnosis Table Provided By University of Utah Health. ICD-10-CM codes allow health care providers and researchers to collate information on specific diseases from patients worldwide, which can lead to improvements in patient care and accelerate research. Dr. Bonkowsky and Monika Baker, PhD, created new ICD-10-CM codes for 12 leukodystrophies and reclassified three codes.
Now that the twelve new leukodystrophy codes are in place and can be used, it opens up a plethora of opportunities for medical professionals and patients alike. The codes are an integral part of disease awareness and ease of educational material for physicians. Doctors who have never encountered leukodystrophies before will now have real patient case studies at their fingertips. Patients will have one more resource in their toolbox when it comes to seeking out diagnostic and treatment options. Researchers will have access to information that was previously scattered inconsistently among many ICD codes that didn’t truly ever define leukodystrophies for what they are, streamlining clinical trials and other projects.
It is encouraged that all patients affected by leukodystrophies educate their care teams on the new codes, and ensure that their charts reflect the new classification. Physicians are also encouraged to educate themselves on the new codes and begin using them immediately.
The ULF wishes to congratulate Dr. Joshua Bonkowsky and Monika Baker on their amazing achievement, and congratulations to the leukodystrophy community as a whole for this historic moment in medical history!
ABOUT LEUKODYSTROPHY: There are over 50 types of leukodystrophy, a neurodegenerative family of diseases that affects the development and/or maintenance of the central nervous system’s myelin sheath. When the myelin sheath is impacted, patients experience a spectrum of symptoms that range from global delays as an infant, disturbances in gait in older children and adults, trouble swallowing and breathing, and more. Leukodystrophies can affect people at any stage of their life, and currently have limited treatment options and no cure.
ABOUT THE ULF: The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals. The Foundation is located in DeKalb, Illinois. The ULF mission is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures. The ULF vision is to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. Through unified collaboration with advocacy groups, medical and research professionals, and pharma/biotech companies, the ULF provides support, networking, and education to help navigate the journey of the disease.
Contact: office@ulf.org or (800) 728-5483
Date: September 29, 2023