NF Midwest | 2016 – Updated 2025
By Multiple Contributors
Leading the Fight for Options in Treating Dermal Neurofibromas: NF Midwest gets new procedure codes approved.
For two years NF Midwest has been working closely with Dr. Taylor, a father of an adult with NF, to clarify what many call electrodessication or what should more accurately be called the electrosurgical removal of neurofibromas in high quantities under general anesthesia. Our immediate goals were to better define what is meant by “electrodessication” and to improve insurance coverage by getting new procedure codes that better delineate the difference between getting a few removed vs. many removed.
Our combined determination paid off and we are very excited to announce that the American Medical Association (AMA) approved two new temporary Current Procedural Terminology (CPT) Codes for the high quantity removal of neurofibromas through electrosurgery or “destruction”.
CPT codes are used to identify what medical service or procedure was performed. Not to be confused with ICD (International Classification of Diseases) codes which are used to identify the disease, complication or symptom that is (or are) being treated. Insurance companies need to know what procedure was used to determine payment. The CPT code provides this information.
The existing CPT codes do not differentiate well enough between the different techniques for removing neurofibromas or between removing several to removing hundreds. This can cause some confusion and issues with insurance coverage.
The new CPT codes are temporary and in effect until the end of 2027 (it was 2022 but extended in 2021). Having these codes does not guarantee payment by insurance. In fact, it hasn’t been determined what monetary value insurance companies are going to put on these new codes. It is believed that insurance will at least pay at the same rate as they did previously.
Surgeons who remove neurofibromas in the way described by the codes will have to use the correct code. If thirty or more surgeons use the codes before they expire they may become permanent which we hope will greatly improve NF1 care.
We hope that these new CPT codes will help us to identify more surgeons who will perform “electrodessication” and will lead to better studies on the impact of removing many neurofibromas.
NF Midwest believes that enough isn’t being done, or studied, regarding the most common complication of neurofibromatosis type 1 and that treatment options for adults who are most often affected by a lot of neurofibromas need to be better explored.
If you’d like detailed information on the new codes, please use the link below. You will be required to provide your contact information. This is so that we can update you as needed. You will also be updated on other NF news, but you can unsubscribe at any time.
Understanding and having this information on hand may prevent, or solve insurance, headaches.
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