A recent study published in the Lancet and funded by BioMarin Pharmaceutical claims to have found a way to successfully treat — but not cure — achondroplasia, a common form of dwarfism in humans.
As The New York Times reports:
The study has raised hope that the drug, if taken over the course of years, can make life easier for those with the condition, known as achondroplasia, including the distant prospect of alleviating major quality-of-life issues such as back pain and breathing difficulties.
But the drug has also ignited a contentious debate in a community that sees "dwarf pride" as a hard-won tenet — where being a little person is a unique trait to be celebrated, not a problem in need of a cure.
The drug, vosoritide, is a synthetic version of a protein that humans naturally produce in order to stimulate bone growth. In trials, the drug added an average of 0.6 inches to a person's height over a year with minimal side effects; while there's no data on how much growth it would add with more prolonged use, the scientists and company in support of the drug believe it will compound over time, significantly increasing heights and potentially easing the medical complications of achondroplasia.
For some people with achondroplasia, however, this sends a message that their bodies are broken and in need of a cure — not unlike the way that some people in the Deaf community feel towards cochlear implants. These are people who are fully capable of independent survival, of physical movement, of communicating and forming relationships, of building things; while they may be built differently than other people, that doesn't mean it's wrong. The problem, they believe, is that other people have built a world that doesn't accommodate them. Why can't the world conform to them for once, instead of always forcing them to conform to the world?
Another passage from the Times illustrates this argument well:
Megan Schimmel attributes much of her strength, compassion and empathy to living with achondroplasia. She said that she wouldn't want to change herself, and that she isn't going to change her 2-year-old daughter, Lily, who also has the condition.
"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, Mrs. 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.
In these cases, Mills recognizes that the world isn't built for her child; so she thinks it's best to adjust her child to fit the world. Schimmel recognizes that the world isn't built for her, but that's the world's problem, not hers. (Sinéad Burke has an excellent TED Talk about this, specifically as it relates to dwarfism.)
BioMarin Pharmaceutical, which sponsored the research into vosoritide, has previously courted controversy with allegations of price-gouging and extortion.
'Dwarf Pride' Was Hard Won. Will a Growth Drug Undermine It? [Serena Solomon / The New York Times]
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