‘Dwarf Pride’ Was Hard Won. Will a Growth Drug Undermine It?

The Four Percent


“I can do everything that someone a foot taller can do, with minor accommodations,” Ms. Schimmel wrote in an email, adding that vosoritide sent a message that those with achondroplasia “are broken.”

Melissa Mills, of Jacksonville, Fla., who does not have the condition, said she had already decided that her 4-year-old daughter, Eden, would use vosoritide if it is approved by the F.D.A.

Yes, Ms. Mills could get a $900 custom bike so her daughter could ride or teach her to drive a car with pedal extenders, but she will embrace an alternative. “With dwarfism, the world wasn’t built for my child, so if there is something I can do to help her navigate the world a little bit better and on her own, I want to do it,” she said.

After Eden’s diagnosis, Ms. Mills said, she joined every support group she could find to learn about her daughter’s condition. Her questions about treatments that increased height whipped up tension. “The more I got involved in the groups and the L.P.A.” — the organization Little People of America — “the more I pulled away.”

The debate over the drug resembles a decades-long discussion among deaf people over cochlear implants, with some taking exception to the suggestion that they should be “fixed” with the device.

Vosoritide, said Mark Povinelli, the L.P.A.’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.



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