The ethical dilemma of a dwarfism drug

Patients with rare diseases typically clamor for drug makers to take an interest in their conditions and develop new treatments. But the story of BioMarin and an experimental therapy that may help children with the most common form dwarfism grow taller is a good deal more complicated.

The treatment, called vosoritide, has stirred up a heated ethical debate among families and doctors and a schism among little people, STAT’s Damian Garde writes — because many in the community see dwarfism not as a disability in need of treatment, but a difference that should be celebrated.

“People feel like this is an effort to eliminate the dwarfism community,” one disability advocate told STAT. Others are celebrating vosoritide’s potential FDA approval — and wish they’d had the drug as an option when they were children.