Diagnosing Familial Hypercholesterolemia – The Need for ICD-10 Codes for FH

The FH Specific Diagnosis Codes are on Track for October 2016

The transition to ICD-10 has begun and you might be wondering why there are still no International Classification of Diseases (ICD) codes specifically for familial hypercholesterolemia (FH).  The answer is that we are still waiting for the ICD-10 Coordination and Maintenance Committee’s decision on the Family Heart Foundation’s application for distinct diagnosis codes for FH, submitted in January of 2014.

This comes as no surprise. When we applied, we knew that there would be no new diagnosis codes included in the first year of ICD-10 implementation. This is due to a code freeze in place since 2011 and is not unique to our application. So, when the implementation of ICD-10 was delayed by Congress from October 2014 to October 2015, that pushed the possible inclusion of ICD-10 codes for FH off until October 2016.

We are hopeful that our application will be approved and that the ICD-10 Coordination and Maintenance Committee will announce their decision in the Spring of 2016.

A Brief History of ICD-10 Codes Application for FH

the Family Heart Foundation’s Global FH Summit in September 2013 identified the need for specific diagnosis codes for FH.   Current codes used for diagnosis and treatment of FH encompass all forms of high cholesterol and do not distinguish familial hypercholesterolemia or encourage family screening.  People with FH need earlier, more aggressive treatment than others who develop high cholesterol later in life, and family screening is essential for early diagnosis and treatment.

In January 2014, the Family Heart Foundation and the National Lipid Association (NLA) applied to the National Center for Health Statistics for distinct diagnosis codes for FH, including Heterozygous and Homozygous Familial Hypercholesterolemia and taking a family history for FH. Family Heart Foundation representatives spoke at the public hearing of the ICD-10 Coordination and Maintenance Committee in support of codes for FH in March 2014 and the FH community wrote in during the public comment period. The Committee is currently considering the proposal and we hope to hear their decision in the Spring of 2016, with implementation of new codes, if approved, in October 2016.

See Katherine Wilemon’s video from the Summit HERE

See video of the hearing HERE

2 Responses to “Diagnosing Familial Hypercholesterolemia – The Need for ICD-10 Codes for FH”

  1. Denise Durak

    “Pure Familial Hyperlipidemia.” Is that code being dropped or more codes be added. Yes, I agree, this is urgent to get coding so patients who need more aggressive therapy can try to obtain it with their insurance company. At this point in time, lab results, maybe genetic tests, and family trees or family data banks are required, and it is a long difficult process. Is this being addressed by the committee?

  2. John Jensen

    I work in the pharma industry and I truly believe that is necessary to have ICD-10 codes for FH. I had an MI at the age of 40. I didn’t know that I had FH. I had an excellent diet and exercised regularly, but my cholesterol was still high. There are so many people who are undiagnosed that have family history. Heart disease is the number one killer that can be prevented with proper screening and tests.


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