Contribute Try STAT+ Today

In a move fraught with bitter overtones, the parents of twin girls who have a rare and fatal genetic disorder filed a lawsuit claiming a rare-disease drug accelerator and a drug maker misappropriated confidential business plans and medical research that was shared as part of a deal to find a treatment for the affliction.

The lawsuit was filed by Christine and Hugh Hempel, whose persistence in trying to find a salve for Niemann-Pick disease Type C is an example of the Byzantine challenges facing families that encounter rare diseases. Now, though, their efforts, which have been extensively chronicled, have detoured to a federal court because they claim precious data was misappropriated by companies that breached an agreement to work together to fight the disease.

Unlock this article by subscribing to STAT+ and enjoy your first 30 days free!


What is it?

STAT+ is STAT's premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond.

What's included?

  • Daily reporting and analysis
  • The most comprehensive industry coverage from a powerhouse team of reporters
  • Subscriber-only newsletters
  • Daily newsletters to brief you on the most important industry news of the day
  • STAT+ Conversations
  • Weekly opportunities to engage with our reporters and leading industry experts in live video conversations
  • Exclusive industry events
  • Premium access to subscriber-only networking events around the country
  • The best reporters in the industry
  • The most trusted and well-connected newsroom in the health care industry
  • And much more
  • Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr.
  • What’s needed is not Right to Try but Right to Drugs. A restoration of the traditional American right.

  • On first reading, it would seem the concluding lines – that Sucampo is being purchased by Mallinkrodt – would seem to be another match truly ‘made in hell.’ Likes,it would seem, do attract but of course, this is only on first reading.

Comments are closed.