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Input: David Mitchell  66  has multiple myeloma  a blood cancer that is incurable but treatable. To stay alive   he  takes $440 000 worth of drugs a year.  Mitchell  counts  himself  as lucky.  He  has Medicare and can afford to buy Medicare Supplement Plan B  so  his  insurance covers  his  drugs. But not everyone is so fortunate  which is why instead of quietly retiring in  his  60s   he  founded a nonprofit to take on high drug prices. Patients for Affordable Drugs launched earlier this year  and it’s already making noise. On August 29  for example  just one day before the Food and Drug Administration approved a groundbreaking new cancer therapy called Kymriah from the Swiss pharma company Novartis   Mitchell  was in a meeting with several Novartis executives to talk about its price.  Mitchell  did not know then that FDA approval was so imminent  but  he  did know that whenever Kymriah did get to market  it would be astronomically expensive. Kymriah is the first in the new class of therapies known as CAR-T  in which a patients’ own T cells are genetically engineered to go after cancer.  Mitchell  implored Novartis to price Kymriah fairly.
The next day  with FDA approval in hand  Novartis announced the new therapy would cost $475 000 per treatment. I spoke to  Mitchell  last week about  his  meeting with Novartis and  his  reaction to Kymriah’s pricetag. Ben Wakana  the executive director of Patients for Affordable Drugs  also joined parts of our conversation below. Their campaign  while relatively new  is an extremely polished one. Before working on Patients for Affordable Drugs  Mitchell was a partner at GMBB  a communications firm perhaps best known for cutting ads for Democrats  and Wakana was spokesperson for the Department of Health and Human Services. The nonprofit is funded with half a million from the Laura and John Arnold Foundation in addition to $75 000 of Mitchell’s own savings and another $75 000 they have since fundraised. A transcript of our conversation  edited and condensed for clarity  is below. Butch Ramsey Sarah Zhang: So how is your health these days? David Mitchell: My health status is great. I’m a very lucky man. The drugs I’m using are working and I am tolerating them very well. I am relapsed  so I'm into the second line of drugs. Myeloma finds its way around drugs. It mutates and changes  so I need new drugs and innovation if I want to live as long as I hope to. You know  watch my youngest son graduate from college  that'd be cool. Have a grandchild  that would be cool.
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. Zhang: Novartis did take two unusual steps when announcing the price of Kymriah. First  they pointed to a British analysis to say they actually thought Kymriah was worth $600 000 to $750 000 but they were going to price it lower at $475 000. And second  they said patients who don’t respond after 30 days to the treatment will not have to pay.
Mitchell: Now we don't know if that's the right end point because it turns out over 20 percent of people relapse in six months. So maybe it would more genuine of them to suggest they give a refund to people who relapse at six months or within six months. “It's not about you as one individual company; it's about the emergence of a new class of therapy.” Zhang: Why did you set your sights on Novartis and their therapy Kymriah in the first place? Mitchell: First of all  we work on all drugs. We work with people who have all diseases from high blood pressure and cardiac disease to multiple sclerosis and cystic fibrosis. However  we decided that it was important to focus on the emergence of a whole new class of therapies. We need to put focus and energy on CAR-T and Novartis got our attention because it's first. And we told them that when we went to visit with them. It's not about you as one individual company; it's about the emergence of a new class of therapy. Zhang: What else does Patients for Affordable Drugs do?  Mitchell : This week we're incredibly busy. We're helping support a rally at Eli Lilly to protest the skyrocketing prices of insulin. Insulin prices have increased more than 300 percent in the last decade. It's outrageous and people are suffering because of it. There's a rally at Eli Lilly September 9  and we'll be supporting that. One of our staff is getting on a plane to go to California to help work in support of SB-17  which is a bill in California for transparency and early notification of drug price increases. We are mobilizing our community out there and will in fact have one of our patients at a news conference there.

David Mitchell  a Cancer Patient Fighting High Drug Costs