Family Sues Biotech Companies For Privacy Breach

The Hempel family decided to take action against Vtesse and Sucampo Phamaceuticals who allegedly stole and sold their private information for profit, reported Forbes. The Hempel family has two twin girls, Addison and Cassidy, suffering from a rare disease called Niemann-Pick Type C. It is to their family’s understanding that these companies broke their privacy contract, conducted unjust enrichment and shared trade secrets.

Niemann-Pick Type C leads to symptoms of physical limitation, developmental delays, onset of seizures and possibly loss of hearing. The twins were diagnosed as toddlers and over time their bodies fail to metabolize and deliver cholesterol, which leads to excessive buildups in the liver, brain and spleen. They quickly developed enlarged spleens. The disease is fatal and incredible rare affecting about 500 worldwide. There is no cure to date. To learn more about this rare disease, click here.

The Hempel’s lawsuit comes from Vtesse’s actions to make a $200 million dollar deal, and potentially develop into a billion dollar company, off of cyclodextrin. Cyclodextrin was a potential treatment the Hempel family pursued based off of a reference from Benny Liu, a scientist at the University of Texas Southwestern Medical Center. The Hempels went on to purchase the products and administer it to their twins. They sought out the FDA for approvals and spoke with Johnson & Johnson to share research regarding the product. They developed strategies, technique, safety data and more.

It was learned that the data they collected was private and shared with potential partnering companies, yet Cydan instead took the information they learned and went on to start Vtesse, which was later purchased by Sucampo. The Hempels expressed they had plans to make a non-profit organization to eventually develop cyclodextrin. Yet, there were patents to protect the idea, they only have the data they collected from their daughter.
Hastings, a doctor who treated the twins, was sad to hear of the news. Rather than the rare disease community coming together for a greater common goal, there has been a strong division and it’s hard to say when it will heal.

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