The Bad Economics of the U.S. Health Care System Shows Up Starkly in its Approach to Rare Diseases

If you ever end up in an emergency room, the first thing that happens is a doctor or nurse will check your “critical” vitals: 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 (e.g. an x-ray or blood test) 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. An estimated 80% of the 7,000 identified rare diseases are caused by DNA mutations that occur during pregnancy, meaning most of those with this category of illness are born with it. In many cases, these babies emerge from the womb with life-threatening conditions that doctors—working the triage system—will immediately address. However, this also tends to lead doctors to then ignore the underlying rare disease—an “unnecessary medical expenditure,” in the triage...
Source: TIME: Health - Category: Consumer Health News Authors: Tags: Uncategorized Health Care Rare Disease Source Type: news