Citing exorbitant prices and corporate greed, an international group of biohackers is creating a knockoff of Glybera, a gene therapy priced at $1 million per treatment used to treat ultra-rare lipoprotein lipase deficiency, an inherited disease, according to Technology Review.
The group has engineered a low-cost prototype and plans to call upon university and corporate scientists for improvements and testing. They will begin to share materials and plans this weekend at Las Vegas conference Biohack the Planet.
Experts familiar with the project have had mixed opinions, with some calling it misguided and others impressed as the excessive cost of current treatment has left patients with no option. Concerns include the infringement of UniQure’s, the manufacturer of Glybera, property rights and signficant regulatory and commercial hurdles, as it is illegal to sell DIY gene therapy.
The group, facing past criticisms and failures, are taking steps to show that “Slybera” is a viable option and should be taken seriously as a more afforable treatment option.