Drug pricing advocates put NIH in the hot seat 

The drug industry foe Patients For Affordable Drugs has a new report out this morning arguing that taxpayers have contributed at least $300 million toward the development of a gene therapy to cure sickle cell disease — and the group says that’s reason enough for the NIH to demand the treatment be reasonably priced.

“Given the $1 to $2 million price range of recent gene therapies, we are concerned that a sickle cell cure will be brought to market at a price that is unaffordable for patients and for the taxpayers who supported its development,” the group writes. “The NIH should use all levers in its power to ensure the final price accounts for public investment.”

The group has a number of suggestions to NIH on how to establish pricing guardrails, including requiring that the drug maker price the drug at no more than the average of comparable OECD nations.

This isn’t the first time drug pricing advocates have railed against NIH licensing out government-developed drugs without restricting what drug makers can charge, but those complaints so far have fallen on deaf ears. 

An NIH spokesperson declined to comment on P4AD’s pricing concerns and emphasized that NIH does not have a role in setting prices. The spokesperson also disputed P4AD’s argument that $300 million went to the development of this one particular therapy, because the NIH studies were foundational research studies. “You can’t take foundational studies and apply them to one product,” the spokesperson said.