Mitchell: I don't know that we know that answer—

Ben Wakana: You would have to ask Novartis. I will throw out a hypothesis, which is we sent Novartis a letter and said we’re asking you to price this drug fairly. At the same time we started a petition where we said to people, “Tell Novartis to price this drug in accordance with the fact that U.S. taxpayers spent $200 million researching CAR therapy.” In within 11 days, we got 3,455 people to sign that petition. I would like to think when patients speak up, and we're an organization that represents patients, that has an impact on people. Now it could just have been [then Novartis CEO] Joseph Jimenez was in a good mood one day and told his folks to meet with us.

Zhang: How did the meeting with Novartis go?

Mitchell: [laughs] It was a very polite meeting—what do they call it in diplomatic circles? There was a frank exchange. It was about an hour and 15 minutes long. Novartis talked maybe 45 or 50 minutes of that hour and 15, and mainly they explained to us why the drug had to be so expensive and why “financial toxicity” is not their fault; it's the fault of the health-care system, it's insurers, it's pharmacy benefit managers, it's doctors, hospitals, it's everything else, it's not them. They're innovators, and the problem is a screwed-up system. And then they spent a lot of time explaining why the drug had to be so expensive.

We hoped to actually have a discussion. They just told us why it had to be expensive. They used a word that drug companies often use in conversations that I have had with them. They said, “It’s very complex, David.”

Zhang: As you know, Novartis disputes the $200 million figure because not all of that money went directly to CAR-T for cancer or toward the specific therapy behind Kymriah.

Mitchell: We're going to send you a clip from a blog post by Francis Collins, the head of the National Institutes of Health, in which he explains the long history of NIH in building the foundational science for CAR-T. Here's our position: From 1993 until 2017, NIH invested more than $200 million in the overall science of CAR-T. Even the seminal paper that was published in August of 2011 by Dr. Carl June of the University of Pennsylvania was funded in part by the NIH.

All of the makers—Novartis, Kite (which will become Gilead), and Juno [other companies pursuing CAR-T cell therapy]—are standing on that foundational science. The taxpayers invested early when the risk was the greatest.

Zhang: What do you think is a fair price for Kymriah?

Mitchell: Well, we have run the numbers a variety of different ways. Now, the point is no one knows the real numbers except Novartis, so we go back to the statements in a Reuters article in 2015 where Kite’s chief financial officer said they thought the base price was $150,000 for treatment, and analysts at that time were saying [costs could be] up to $300,000. When we tried to model, we can’t get over $300,000.