A Code of Its Own: ICD-10 code update finally 'legitimizes' nonradiographic axSpA
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Nonradiographic axial spondyloarthritis remains an underrecognized and undertreated condition in the United States, with rheumatology often the last stop for many of these patients. However, with a recent ICD-10 code upgrade, that may begin to change.
Effective October 1, 2021, the ICD-10 Coordination and Maintenance Committee, a subcommittee of the CDC, has updated the diagnostic coding manual to include nonradiographic axial spondyloarthritis (axSpA) as its own specific diagnosis. The new sub-category, M45.A, could have dramatic repercussions for patients with this condition, and for the rheumatologists who treat them.
Although these patients experience the same pain and limitations as their counterparts with ankylosing spondylitis, patients with nonradiographic axSpA demonstrate no evidence of disease on X-ray of the sacroiliac joints. This is one key reason why the average time from onset of symptoms to diagnosis in this population can be as long as 8 years.
With a specific ICD-10 code now in place, this diagnostic delay — and management of these patients overall — could significantly improve. But it will take time.
Healio Rheumatology sat down with Jeffrey Stark, MD, head of medical immunology at UCB, to discuss the short- and long-term implications of this new diagnostic designation in the clinical and research arenas.
Healio Rheumatology: What are some of the unique challenges facing patients with nonradiographic axSpA?
Stark: The first consideration is that these patients are part of a larger spectrum of diseases called axial spondyloarthritis. Nonradiographic patients experience pain, fatigue and stiffness the same as patients with ankylosing spondylitis. However, they do not have the damage to the sacroiliac joints that appears on X-ray, as seen in patients with ankylosing spondylitis. Without these imaging findings to confirm the diagnosis, these patients are often misdiagnosed or mischaracterized.
As a rheumatology community, we also tend to associate a lack of radiographic progression with milder disease. The resulting misconception that nonradiographic axSpA is a mild disease means these patients are sometimes treated with a lack of urgency. But these patients do not have milder condition, they have a different condition altogether.
Healio Rheumatology: How is the new ICD-10 sub-category different than previous sub-categories used for this condition?
Stark: The path to where we are today with the ICD-10 code has truly been a journey. It can really be broken down into three phases. Prior to October 2020, there was no approved code of any kind for nonradiographic axSpA. Patients were diagnosed using the spectrum of codes that providers could use for ankylosing spondylitis or other conditions. It was a terrible situation for the clinical and research communities in nonradiographic axSpA. Then UCB began to explore potential solutions with the ICD code committee.
As a result of those interactions, an application was submitted by UCB in July 2018. On October 1, 2020, the committee made a change that was the first step in the right direction: To index nonradiographic axSpA to code M46.8, which is used for other specified inflammatory spondylopathies. This is technically an accurate descriptor for patients with nonradiographic axSpA, but it had very little utility for research.
Healio Rheumatology: Why not?
Stark: In short, researchers could not be confident that a patient diagnosed with this code actually had nonradiographic axSpA and not some other condition. This was progress but not the Holy Grail. UCB then followed up to request a more specific code for nonradiographic axSpA which was supported by the ACR, the Spondyloarthritis Association of America, patient advocacy groups and other organizations.
Together, with their support, we were able to submit the application for a new and specific code for nonradiographic axSpA. The update to M45.A went into effect on October 1, 2021, and it brings welcome attention to this condition; for patients, it legitimizes their disease.
Healio Rheumatology: Why did this development happen now?
Stark: It is important to recognize that administrative advancements always tend to lag behind scientific advancements. However, the FDA has had a history of weighing in on nonradiographic axSpA trials dating back to 2013, when they noted it was important to do specific clinical trials for this population. Then, when the FDA put its seal of approval on one therapy and then two others thereafter, it went a long way to legitimize the disease among not only the rheumatology community, but also among the authors of the ICD coding manual.
Healio Rheumatology: Why is this new categorization important for rheumatologists?
Stark: It is important that we as rheumatologists categorize our patients as accurately as we can, separate them from other disease states and follow these patients appropriately. One reason for this is that there may be differences in the way that patients respond to medications. Knowing what to expect and choosing the proper therapy for that patient is critical. An accurate diagnosis also helps us to know what symptoms and manifestations to expect.
In terms of epidemiology, patients with nonradiographic axSpA are more likely to be female, so having that in mind helps to reinforce an index of suspicion that the patient does not have a male-dominated disease like ankylosing spondylitis. Nonradiographic axSpA tends to have more peripheral manifestations, while ankylosing spondylitis tends to have more axial manifestations. Having an ICD-10 code to document the proper diagnosis ensures that patients are categorized and treated accurately and helps us know what to expect for any given patient.
Healio Rheumatology: Why is it important for patients?
Stark: The patient experience prior to a specific nonradiographic axSpA code was really a difficult one. Even when a provider was able to diagnose their condition — which, as I mentioned, often came after many years — they ultimately were often told, “Sorry, there is no code for this.” For many nonradiographic axSpA patients, to discover that their diagnosis could not be formally documented in their medical record was disheartening; many felt the legitimacy of their own experience was questioned. Now that there is a code, they can feel secure that they are recognized and that there will be evidence-based management strategies in place.
Healio Rheumatology: How is this going to impact treatment of this condition?
Stark: The good news is that in the last several years, we have developed therapies to treat nonradiographic axSpA. However, in the absence of a specific ICD-10 code, a mismatch between the drug’s approved indication and the patient’s ICD-10 code sometimes posed challenges to reimbursement. Now that we have both FDA approval of these treatments and the ICD-10 code to go with it, we may be able to move the needle in terms of getting these patients diagnosed and into treatment much sooner as this code gains use across the medical ecosystem.
Healio Rheumatology: How is the new category going to impact the research arena in the short-term?
Stark: Unfortunately, the impact in the short-term will be more of a challenge than the long-term. As much of a success as the creation of this new code has been, what makes it ultimately impactful is the adoption and utilization in research and clinical practice –and that will just take time. Up to now patients with nonradiographic axSpA have been misdiagnosed or put into the category that seemed to best fit their symptoms. It will be difficult to break those habits. But, with consistent utilization, the new code will allow us to create specific databases of patients with nonradiographic axSpA that will help us generate quality data down the line.
Healio Rheumatology: How about in the long-term? What kind of impact could future research into nonradiographic axSpA have on patient care?’
Stark: The prospects for both patient care and research in the long term are great. There is much we still do not understand about this condition. It is difficult to identify in databases, sometimes requiring adjudication at the individual patient level. This diagnostic code will help facilitate analysis of both individual patients and groups of patients. For example, our best estimates of the epidemiology for nonradiographic axSpA suggests that the disease is dramatically more common than our current databases seem to substantiate. That disconnect is haunting.
There are a vast number of patients who are either undiagnosed or mischaracterized. This new code is going to benefit them for years to come by bringing welcome research attention to the disease. We hope it will shorten diagnostic delays and ultimately ensure that those patients are being captured and treated correctly in both the clinic and in research studies.
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