CDC code will guide better treatments, cut insurance delays related to rare neuroinflammatory condition.
OLNEY, Md., Oct. 2, 2023 /PRNewswire-PRWeb/ -- The MOG Project, a nonprofit organization committed to supporting the research and treatment of Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD) announced that its Executive Director Julia Lefelar, with support from The MOG Project Executive Board and Children's Hospital Los Angeles (CHLA) Pediatric Neurologist Jonathan Santoro, MD, secured approval to have the US Centers for Disease Control and Prevention (CDC) create an ICD-10 code for MOGAD. As of October 1, 2023, an official code for MOGAD is included in the 10th edition of the International Classification of Diseases (ICD) and Related Health Problems, which is relied upon by physicians and insurance providers to classify diagnoses and advise treatment.
Without a CDC code, MOGAD patients had previously been grouped in with patients with similar diseases like neuromyelitis optica spectrum disorder, optic neuritis, acute disseminated encephalomyelitis, transverse myelitis and even multiple sclerosis. This complicated the process of getting an accurate diagnosis of MOGAD for patients and led to insurance delays and in some cases inappropriate treatments. The classification system was created by the World Health Organization but is coordinated in the U.S. under the CDC.
"MOGAD patients like me need an ICD-10 code for everything from properly recording a diagnosis, to securing health insurance coverage, to encouraging clinical trials and obtaining FDA-approved medications indicated for MOGAD," said Lefelar. "For the MOGAD community, this CDC code is more than a win for better health outcomes and fewer insurance delays, it gives our rare disease an identity and legitimizes it."
MOGAD is a neuroinflammatory condition in which the immune system attacks vital myelin oligodendrocyte glycoproteins in the optic nerve, brain and/or spinal column. This rare disease is still widely unknown as an antibody test to diagnose it was not widely available until 2017.
To obtain the CDC's approval, Lefelar and Santoro, director of the Neuroimmunology and Demyelinating Disorders Program and director of Research at the Neurologic Institute at CHLA, researched the process, submitted a proposal making the case for the ICD-10 code in the fall of 2021 and then worked to rally support from the neurologist and MOGAD community. After an initial rejection, Lefelar and Santoro were invited to give an advocacy appeal and speak about the medical need for the code in the fall of 2022. The CDC passed a final rule calling for the new code in March 2023, which officially became effective October 1. On September 15, Lefelar spoke to leaders in brain health at the Brain Health & Research Day of the 78th United Nations General Assembly encouraging the WHO to adopt a similar proposal for their ICD-11 coding platform, submitted by The MOG Project in 2020, for MOGAD patients around the world.
"The addition of a MOGAD specific ICD-10 code allows patients to better access the therapies that they need to treat their disease," said Santoro. "Further, it allows for disease monitoring across the country, which will increase knowledge and research on this rare neuroimmunology disorder."
About The MOG Project: The MOG Project is a 501(c)3 nonprofit committed to raising awareness and supporting the treatment of Myelin Oligodendrocyte Glycoprotein Antibody Disease, or MOGAD. Founded in 2017, The MOG Project is supported by a medical advisory board made up of leaders from top U.S. neuroimmunology labs. For more information about The MOG Project, visit https://mogproject.org/.
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SOURCE The MOG Project
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