But things can go horribly wrong when accurate diagnostic codes are absent. Many Lyme disease symptoms and complications are not found in the diagnostic codes. For example, Dr. Neil Spector, a top cancer researcher at Duke University School of Medicine, was near death because Lyme disease severely weakened his heart.
However, he had a range of symptoms that are not found in the ICD10 codes for Lyme. So as his heart problems developed, they were not attributed to Lyme. This resulted in a life-saving heart transplant; twelve years after his tick bite.
Lyme disease isn't rare. More than 300,000 Lyme disease cases are reported each year by the CDC in the U. S. alone. It is six times more common than HIV/AIDS and twice as common as breast cancer. When appropriate diagnostic codes are missing, care is often denied and unreported, leading to life-threatening and debilitating illnesses. Patients become invisible to the medical system and to those guiding public policy.
Without diagnostic codes, physicians are hamstrung in their ability to properly care for their patients, leaving many cut off from appropriate treatment and insurance coverage. This contributes to great personal hardship, pain, disability and expense.
But this may soon change. The Global Network on Institutional Discrimination recently contacted Dr. Ian Smith of the World Health Organization (WHO) to request a meeting to modernize the Lyme disease diagnostic codes.
Jenna Luché-Thayer, director of the Global Network on Institutional Discrimination, is confident that WHO's policies and procedures requiring engagement with stakeholders will prevail.
To support WHO's commitment to equal access to health care, medical and scientific experts around the world have joined Luche-Thayer to develop codes that capture the many serious complications of Lyme disease. This group is called the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes.
Worldwide Lyme disease patients groups support this initiative. Because with accurate codes, those "bit by a tick" can soon join those getting "struck by a duck" as having conditions worthy of treatment.