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.

But the experience of having this disease and using these drugs brought me face-to-face with the challenges of high drug prices for people, and the fact that drugs don’t work if people can’t afford them.

Zhang: Why did you start a nonprofit in Patients for Affordable Drugs?

Mitchell: I had been doing health-care policy and communications work for 30 years here in Washington. Last summer, after watching nobody speak up for patients on the issue of high drug costs, I woke up one morning and had an epiphany. I went down and talked to my wife and said, “Hey would it be okay if I retire at the end of this year, and we set up an organization to work on behalf of patients to lower drug prices?” She's a cancer survivor herself, breast cancer. She's in the middle of five years of Tamoxifen right now, and she said, “Okay let's do it.” So at the end of last year, I retired. I work for free. On February 22, we launched Patients for Affordable Drugs.

What do we do? We seek to amplify the patient’s voice on drug pricing to policy makers, elected officials, media. And we seek to organize, activate, and mobilize patients on behalf of policies that will lower drug prices. Since we started, we have collected more than 8,000 patient stories, and I think we're pushing 18,000 email addresses and zip codes, building a community of patients that can be mobilized to support policy changes at the federal and state level. And by pushing for different approaches in the private sector.

Zhang: You're a pretty young organization. How did you convince several Novartis executives to meet in person with you?

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.

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.

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.

We’re also active on a bill in Congress now called the CREATES Act. We had meetings with the coalition meeting on that yesterday. The CREATES Act would stop abuses of brand companies that prevent cheaper generics from coming to market. We are active the state level, the federal level, the private-sector level. We have a lot of things going on; CAR-T is one.

Zhang: Insulin is such a classic example of the problem of rising drug prices because it has been around so long, and several companies make versions of the drug. Would you put that problem in the same category as the high cost of CAR-T, which is truly innovative and quite expensive per dose because it’s customized for each patient? Or are they different problems that require different solutions?

Mitchell: It's the same thing. Again, remember we're on the beginning of a new phase in terms of the price of CAR-T drugs. In some ways, you can argue that the abuses by the insulin cartel are more outrageous, and that we're in a process right now in CAR-T of trying to encourage fair pricing that will establish precedent for the future, so both are important. And every patient is important. It doesn't matter if they're taking insulin, or if they're taking a monoclonal antibody like the drug I take. Every patient, every family is important, so for us, all the drugs are important because we're about patients.

Zhang: I think it's fair to say you both have ties to Democratic lawmakers from your work in the past. President Trump has said a lot of things about high drug prices. What's it been like trying to work with the Republican administration on this issue?

Mitchell: Well, first of all, we are nonpartisan, and we work with people on both sides of the aisle. We have a bipartisan board of directors. We'll work with anybody from any party, or not from any party, who wants to do something meaningful to lower drug prices.

And I think it's important to note that the bill on price gouging that passed in Maryland passed on bipartisan support. The bill on transparency in Nevada passed on bipartisan support and was signed into law by a Republican governor. This is not a partisan issue. The pain that's out there knows no party.