Diagnosis Codes & Desmoid Tumors

We would like you to know that, in July 2021, DTRF submitted a proposal to the CDC’s ICD-10 Committee for a new code specific to the diagnosis of desmoid tumor, including subcategories for tumor location. We believe a specific desmoid tumor code will improve research as well as patient care.
This is the beginning of what may be a long, deliberative process. We will keep you updated as we hear more on the committee’s decision.

What is an ICD-10 code?

When a medical diagnosis is made a diagnosis code is used. This code is known as an ICD-10 code and is used by everyone from your health insurance company to your medical institution to national research databases to categorize your diagnosis. It has been reported that out of the ~7,000 rare diseases, only ~500 have disease-specific codes.

If There Is No Desmoid Tumor Icd Code, What Is Used Now?

Right now, desmoid tumors fall under an ICD-10 code that covers a wide variety of connective and soft tissue tumors of “uncertain behavior”. Specifically, “D48.1 – neoplasm of uncertain behavior of connective and other soft tissue.” This code encompasses dozens of different tumors.

Why Is Getting This Code Important?

From a research perspective, not having a desmoid-specific code has prevented understanding of the true prevalence and incidence of desmoid tumors and makes it difficult to identify desmoid tumor cases in nationwide population databases during research. This obtuse code can also sometimes impact health insurance coverage of certain treatments and does not identify the bodily location of tumors, an important factor in approaching treatment.
The new code could also affect research and treatment by:

Will This Change The Definition Of Desmoid Tumors?

No, we’re not trying to change how desmoid tumors are defined. The new code will just more accurately classify them in the medical coding language.

Will This Affect Insurance Coverage Of Treatments?

Initially, no. The addition of the code more accurately defines desmoid tumors, but it is will still be a subcategory under the currently used code D48.1. Because it will be a subcategory, insurance companies will likely not treat this any different than they do D48.1 to begin with.
However, over time, insurance companies will start to see more claims for a particular treatment with the desmoid-specific code. They will begin to understand that that treatment is common for desmoid tumors and will hopefully start accepting those claims without the need for as many appeals or supporting documentation. DTRF will also launch a campaign to educate insurance companies to the new code, including common treatments for desmoid tumors that go along with the new code.

When Will We Know If Desmoid Tumors Have A New Code?

This is the beginning of what may be a long, deliberative process. We will keep you updated as we hear more on the committee’s decision. If accepted, the news will be public in April and the code will officially go into effect October 2023.