New LYME ICD11 codes may help patients get ACA coverage

Feb. 23, 2022

Twenty-five years have passed since the World Health Organization (WHO) updated the International Classification of Diseases (ICD) codes for Lyme disease. The ICD-11 codes, including those for Lyme disease, took effect January 1, 2022. Nearly a half million persons contract Lyme disease annually in the US; learn how the new medical codes in ICD-11 recognize persistent, congenital and potentially fatal complications from this illness. 

According to a new initiative from the Texas Lyme Alliance, the new medical codes in ICD-11 recognize persistent, congenital and potentially fatal complications from this illness which may help patients receive coverage from the Affordable Care Act (ACA). 

The ICD-11 codes, including those for Lyme disease, took effect January 1, 2022. The codes were developed over a multiyear multi-stakeholder scientific review process and ratified in 2019 by 194 countries, including the US.  

The ICD-11 recognizes a significant number of Lyme complications which can become chronic, cause severe disability, and in some cases, result in Lyme patients were represented in meetings and comprehensive reports submitted to UN Special Rapporteurs for health human rights and human rights defenders. Examples of human rights violations against Lyme patients and their supporters were documented across 11 ratified international and regional human rights treaties and covenants. Comprehensive documentation, patient testimonials and expert views were presented in Geneva to Special Rapporteurs and WHO that helped to significantly expand ICD codes for Lyme disease. 

Affordable healthcare equity for this historically marginalized patient group can increase access to care. The need is particularly acute for at risk children and the unborn. Patients should be aware having codes for an illness does not automatically guarantee coverage of care and the complex US healthcare system is known to require time to adopt new ICD editions. These historical lag times, however, are far less relevant than the opportunity the ICD-11 codes provide patients to negotiate for covered care today, particularly with health insurance policies that align with the Affordable Care Act. 

Lyme disease is a bacterial infection caused by members of the Borrelia burgdorferi sensu lato complex. Although the disease was initially identified in Europe, it was named after the town where the first group of US cases was described. While historically most cases clustered into certain geographic regions, the infection is increasingly widespread across the globe. Lyme disease is the most common vector-borne disease in the United States, with the Centers for Disease Control (CDC) estimating that more than 477,000 cases of Lyme disease are diagnosed each year. 

Lyme disease is also the most common vector-borne illness in Europe. Lyme/tick-borne illnesses IDSA recommendations are inappropriately outdated and were just published in 2020 but was no update for Lyme. It still promotes guidelines that ensure "treatment failure" in a large population.  This is also known as Post Treatment Lyme Disease/PTLDS which has no scientific merit to earn a diagnosis. 

The validation by the WHO of the many debilitating and potentially fatal complications of Lyme disease provides patients a legitimate basis to access extended treatment and covered care. ICD-11 will help increase awareness of Lyme complications, may improve access to covered care, tighten infection surveillance and strengthen reporting by public health authorities. 

Correspondence from WHO ICD-11 Medical and Scientific Advisory Committee and the Director-General for Metrics and Measurement to Jenna Luché-Thayer stated "Congenital Lyme is represented via ICD-11 with post-coordination of codes". WHO stated "appropriate post-coordination options would be incorporated explicitly into ICD-11 for neonatal infections where the organism is not specified. For example: KA6Y Other specified infections of the fetus or newborn can be coordinated with XN13C Borrelia burgdorferi." 

Visit the Texas Lyme Alliance for an interview about the new ICD-11 codes for Lyme