Read below for the story of Robin’s efforts and the important impact it has for those affected by AFM.
As the parent of a child with Acute Flaccid Myelitis (AFM) and having served most of my professional career in healthcare, I was dismayed to learn that AFM did not have a diagnosis code of its own. When my son Carter was in the acute phase of his illness, this wasn’t my primary concern, but upon reflecting, I realize that having a specific diagnosis code would have significantly helped us through the journey.
You see, a claim for every doctor visit is the fundamental and primary way to communicate to an insurance company why and when a patient was seen and what’s going on with them. Claims data, which includes a code for primary and often secondary diagnosis, is super important. Claims data is what helps the healthcare team paint a picture for insurance about how sick a patient is, what’s ailing them, how long a problem or symptom may persist, and can also play a major role in the approvals and/or denials of services and equipment. The powers-that-be at the insurance company pairs this claims data with clinical guidelines, suggestions, and formal medical protocol to help them decide what they should and shouldn’t approve as well as what may or may not help a patient. Claims data is what you see on your doctors’ bills and the explanation of benefits (EOB) that you get in the mail. In essence, it is structured information that is created to help multiple agencies, groups, and individuals manage everyday healthcare business.
For our family, a specific code for AFM may have prevented hours of insurance appeal calls and letters that could have instead been spent reading to Carter or playing another game of Pop the Pig.
I knew a specific diagnosis code could help our community at large. If we wanted the data to support clinical needs, disease prevalence, and research--we needed a code. The generic codes available varied by patient, and even when combined with other symptom codes, were not specific enough for this rare disease. With AFM, so much was out of my control, but one thing I could do was try to help the future families.
During the course of the same day, I received a denial for Carter’s repository medication and a second denial for his wheelchair, I knew it was time to take action. I started by researching the process of creating an ICD-10 code and found that it starts with a division of the Centers for Disease Control (CDC) that manages the International Classification of Diseases or (ICD Codes).
I created a write-up about what the code was for, explaining why the existing codes didn’t meet the need for the condition, and how all the clinical specifics of AFM could coincide with the system. My first attempt at making the case for a needed code failed, but that didn’t deter me. I just knew that to succeed, I would need to be more thorough.
Thankfully, the AFM community provided articles, publications, and information to objectively support everything that I asked for to help make the case. In fact, several weeks after submitting the write-up for a second time, I got a call from this special division coding. The voice on the other end was Cheryl. “Ms. Roberts?”, she asked.
“Yes, this is she.” I replied
“I want to thank you for your request for a new ICD-10 code for Acute Flaccid Myelitis. However, I have one question,” she stated. “Are you submitting this as a physician, on behalf of a medical society, association, hospital, or academic institute?”
“Umm, none of those actually.” I went on to explain that as a matter of fact, although I work in healthcare and was the parent of a child who has AFM, I was none of these things or places. “If it makes a difference, I can submit it as part of my healthcare company,” I said.
Cheryl explained that this wouldn’t be enough – that while I could present the case for a new code at an upcoming meeting and field questions, I would need the endorsement of a reputable clinical or health information management group in order for the case to proceed.
So, like our community has taught me, and as most of us do, it was time to boot-strap some help. I took to Twitter and combed through old emails to find contacts I had been in communication with over the last several years to ask for support. I found Dr. Janelle Routh of the CDC, Dr. Nath at NIH, a contact at The American Academy of Pediatrics, the hospitals, and physicians who helped treat Carter in Richmond, Johns Hopkins, Kennedy Krieger, Dr. Kevin Messacar in Colorado, and many others.
Luckily, there were two favorable replies.
Both Dr. Janelle Routh at CDC and Kevin Messacar at University of Colorado Children's Hospital – a hospital that dealt with one of the more widely known outbreaks of AFM – agreed to back the request not just as individuals, but with the support of their organizations. Together, we presented the case for a new code specific to AFM, responded to numerous questions, and even had to push back on some medical coding experts who opposed the need for this disease-specific code. Many of these professionals thought the generic and varied ones used should suffice. I was undeterred and with the help of Dr. Routh and Dr. Messacar, was able to respond to each question with an appropriate answer.
This week, I am beyond thrilled to announce that our efforts to advocate for a specific diagnosis code for AFM have paid off! Effective October 1, 2021, AFM will have its own diagnosis code.
This will be helpful in tracking disease prevalence, complications, patient needs (i.e. medical equipment and therapies), aid researchers, and help align insurance coverage for disease severity when coded with other symptoms.
Starting in October, this diagnosis code can be used not just in the acute phase but also as a primary or secondary diagnosis for ALL related office visits. The NEW CODE for AFM will be G04.82.
Thank you to the AFM community for their help and support in getting this important step accomplished – it was a team effort and will make the AFM journey a little bit easier for families in the future.
