Triaging might save people in life-and-death situations, but it's an economic drain when it comes to rare diseases and long-term health.
Lynsey Chediak is a Project Lead on the Precision Medicine team at the World Economic Forum where she leads a project developing governance for cross-border data access to accelerate rare disease diagnosis and treatment. She is a rare disease patient and patient advocate focused on implementing new policy and models for closing the treatment gap for people with rare disease.
If you ever end up in an emergency room, the first thing that happens is a doctor or nurse will check your: your temperature, blood pressure, respiratory rate, and pulse. If those indicate your life is at risk, your care is prioritized over others who have already been waiting or who have been seen by a doctor but require additional testing or a specialist to review their symptoms. This process, called “triaging,” is the global standard for allocating resources in emergency care.
Triaging is a marvel of modern healthcare if it is abundantly clear that you are on death’s door. But if there’s no textbook description of your condition, it can leave you needlessly suffering while the experts try to figure it out. That’s often the case for those with rare diseases, a group of conditions that are not individually common, but combined, affect an estimated 10% of the global population, some 475 million people.
But there was another problem that was overlooked, and which wasn’t diagnosed until I was five years old. Every bone in my body was bent and every muscle atrophied or non-existent. I couldn’t move my neck away from shoulder; I couldn’t straighten my legs, knees, arms, wrists, ankles, toes, hands, or fingers beyond fixed, fully bent positions.
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