We Fund the Science. They Set the $3.95 Million Price.
I followed the Kebilidi invoice and found NIH’s NCATS on the public-science side, PTC Therapeutics at the commercial finish line, and a stated price of $3.95 million waiting like it had its own congressional parking space. That does not mean public research invented every molecule or erased the company’s costs. It does mean taxpayers and patients deserve a seat at the pricing table when public support helped move a rare-disease therapy from scientific risk toward treatment.
One-time gene therapies are complex and expensive; nobody is asking the lab to accept payment in inspirational refrigerator magnets. But complexity cannot be the magic word that makes public investment disappear from the conversation. The public helped build the runway, while private billing arrived dressed as the sole owner of aviation. Follow the invoice: government may not have created every part of Kebilidi, but families should not be treated like silent partners who receive only the receipt. Fair pricing and fair taxes are the minimum decent terms.