LONDON — U.K. health officials are facing pressure to rethink how they expand the list of diseases that all newborns are screened for, a traditionally unhurried process that critics argue has led to kids dying from or being left disabled by treatable conditions.
In the U.K., as in much of the world, babies have a few drops of blood taken soon after they’re born to be tested for a number of conditions. The idea is to identify and start treating diseases before they can cause harm.
The list of screening tests varies by country. Portugal and Austria, for instance, screen for some two dozen conditions, while in the U.S., where states have the final say, federal authorities recommend three dozen, having added two more to the list just last month.
In the U.K., babies are tested for 10 diseases. It’s added one over the past decade.
The result, advocates and doctors say, is that babies with certain genetic diseases are diagnosed only after symptoms start snowballing. New medicines, including gene therapies, can often arrest disease progression, but they cannot unwind the cellular destruction a condition has already caused, meaning any delay in delivering a treatment can make a dramatic difference in a child’s life.
The situation in the U.K. highlights how countries approach newborn screening in sometimes starkly different ways, with varying views on both its utility and its drawbacks. The issue has also become a subject of interest for drugmakers, which want to ensure their medicines reach as many patients as possible, both to maximize the benefits for those in need and to bolster their revenue, particularly when it comes to gene therapies, which companies have often struggled to turn into major moneymakers.
