STAT+: Pharmalittle: White House drug-shortage panel is MIA with lawmakers; Ultragenyx sued by Lacks family
The family of Henrietta Lacks, whose “immortal cell line” has led to medical innovations, sued Ultragenyx Pharmaceuticals.
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The family of a woman whose “immortal cell line” has led to medical innovations such as the polio vaccine and gene mapping has sued Ultragenyx Pharmaceuticals, Bloomberg Law notes. The lawsuit claims the company made massive profits using materials derived from tissue taken from Henrietta Lacks in the 1950s without her knowledge or consent. The family is seeking a share of the money Ultragenyx made from gene therapies that are used to treat orphan diseases. This is the second lawsuit the family has filed to force companies to pay for using cells that were taken from Lacks during a surgery. The family announced a settlement with Thermo Fisher Scientific in early August.
On Wednesday, the U.S. Food and Drug Administration will decide whether to approve what would be the first treatment for a condition called fibrodysplasia ossificans progressiva, or FOP, STAT points out. The company that developed the drug, Ipsen, says its treatment, called palovarotene, slows new bone formation, which can help preserve the ability of patients to dress themselves, eat, and use the bathroom independently. Many of the patients with the ultra-rare disease are clamoring for the chance to get the drug, but ambiguous trial results have led to lingering questions about its effectiveness.
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