A new treatment for dwarfism brings us closer to the end of genetic diversity

Back when I was researching “Little People,” my 2003 book about dwarfism, the only treatment for achondroplasia — the most common form of dwarfism — was painful, dangerous limb-lengthening surgery. Understandably, very few people opted for such a drastic treatment, and families whose children had such surgery (it doesn’t work well on adults) were thought to have insufficient “dwarf pride.”

Now an actual treatment for achondroplasia is on the horizon. The New York Times reports that a drug called vosoritide seems to target the genetic anomaly that stops the long bones of the arms and legs from growing. Since that anomaly also causes spinal and respiratory problems, the treatment could prove to be a real breakthrough in improving people’s quality of life.

One of the main themes of “Little People” is the social and cultural meaning of difference — whether we are as comfortable with it as we claim to be, and if we’d eliminate it if we could. At the time, the main threat to dwarfism, and all kinds of genetic differences, was the rise of cheap, routine in-utero genetic-screening tests. Now that an actual treatment for achondroplasia is upon us, the calculation has changed considerably. As the Times’ Serena Solomon writes:

Vosoritide, said Mark Povinelli, the L.P.A.’s [Little People of America’s] president, “is one of the most divisive things that we’ve come across in our 63-year existence.”

The organization does not endorse specific treatments, but encourages members to consider more than height in medical decisions. “We want to show that you can have a completely fulfilling life without having to worry about growth velocity,” said Mr. Povinelli, calling fixations on height a societal issue.

Unlike limb-lengthening surgery, if vosoritide proves to be safe, effective and affordable, I suspect most average-size couples who have a child with achondroplasia will opt for the treatment. Drugs available for several decades have all but eliminated dwarfism caused by hormonal deficiencies, and I can’t imagine why achondroplasia would be any different. We would have chosen it for our adult daughter, Becky, who has achondroplasia.

Doctors are not going to educate new parents about dwarf pride or the advantages of diversity. Instead, they’re going to tell them about a treatment. This not an unalloyed good, but it is reality.

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