Thalassemia Doctors Succeed in Modifying Important Medical Codes

August 19, 2011 – A committee of dedicated thalassemia doctors working with representatives from the American Academy of Pediatrics has brought about a major change that will have a significant impact on identifying individuals with thalassemia in the United States.

Jeanne Boudreaux, MD (Children’s Healthcare of Atlanta), Thomas Coates, MD (Children’s Hospital Los Angeles) and Ellis Neufeld, MD (Children’s Hospital Boston), working in conjunction with Jeffrey F. Linzer, MD, FACEP, FAAP, of the American Academy of Pediatrics (AAP) and David Berglund, MD, MPH, of the Coordination and Maintenance Committee (CMC) of the National Center for Health Statistics, have succeeded in revising the ICD-9 codes for thalassemia.

What are ICD-9 Codes?

“ICD” is an abbreviated way of referring to the International Classification of Diseases, a medical classification that provides codes to classify diseases and a wide variety of signs, symptoms, etc. These codes are designed to promote comparability in the collection, processing, classification, and presentation of statistics related to prevalence, mortality, morbidity, etc.

The ICD Codes have been revised periodically, and “ICD-9” refers to the ninth revision, currently most widely used in the U.S. The changes in thalassemia made in the ICD-9 Codes will be carried over as future revisions become commonly used in the U.S.

CAF will soon make available a listing of the new thalassemia ICD-9 Codes for patients to bring to the attention of local hematologists.

Prior to now, there was only one ICD-9 Code which was used to classify all forms of non-sickle-cell-related thalassemia. This means that one code was used whether an individual had beta thalassemia minor/trait, alpha thalassemia minor/trait, beta thalassemia major, beta thalassemia intermedia, e beta thalassemia, hemoglobin H disease, etc. Under the new system, which goes into effect October 1, 2011, six categories will now be available to better specify the form of thalassemia with which an individual has been diagnosed, making it much easier to get a clearer picture of thalassemia in the country.

Although the need for an expanded classification for thalassemia has been apparent for some time, Dr. Boudreaux explained that this recent push for re-classification came about as a result of the new RuSH (Registry and Surveillance for Hemoglobinopathies) program from the CDC (Centers for Disease Control and Prevention) and NHLBI (National Heart, Lung and Blood Institute), which seeks to create a population-based surveillance system and registry for thalassemia and sickle cell. (For more information about RuSH, click here or here.)


“As part of the RuSH program, we needed to figure out the best way to capture how many thalassemia patients actually exist in the United States,” Dr. Boudreaux says. “Most large databases track diseases not by name but by ICD-9 code. But using the existing code, we would end up with a relatively large bucket of people containing mostly trait carriers with no way to easily separate out the clinically significant thalassemia.”

Jeanne Boudreaux
Thomas Coates
Ellis Neufeld

Dr. Boudreaux explains that on a February 2010 RuSH planning call, Donna Pickett, MPH, RHIA, of the CMC approached the thalassemia experts on the committee and said that changing the ICD-9 Codes would be valuable. “Over the next few calls, we talked about how we could go about this and who could help. It happened that I knew Jeffrey Linzer, who is the AAP Representative to the ICD-9 Editorial Advisory Board, so I approached him for advice on what we needed to do to get this done.

“Essentially, we needed to draft a proposal explaining what we wanted and why it was necessary and demonstrating that there was support for this among the appropriate community. The Committee meets twice a year to review the proposals, and we were too late to submit one for the fall 2010 meeting, so we aimed for the spring 2011one instead.

“Tom, Ellis and I formed a subgroup to draft the proposal, which we then presented at a CDC Committee in-person meeting in December, 2010. After getting feedback, we made revisions and submitted it to the AAP and worked with them to get their approval.”

Dr. Boudreaux presented the proposal to the ICD-9 Committee in March, 2011 and after a period of public comment and requests for clarification, it was approved in July.

“This will really help us to better trace the epidemiology of thalassemia: who has thalassemia, where they are, what kind of healthcare resources they are utilizing, where we are going, etc.,” says Dr. Boudreaux. “We know that that the face of thalassemia is changing rapidly, and this will help us respond to that.”

CAF heartily congratulates Dr. Boudreaux, Dr. Coates, Dr. Neufeld, Dr. Linzer and Dr. Berglund for their determination in bringing about this important modification in the ICD-9 Codes.

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