As a 40-year veteran communications specialist in health policy, David Mitchell of Potomac, Maryland, knew all the health campaigns by heart. “Campaign for Tobacco-Free Kids, Mothers Against Drunk Driving, Click It or Ticket — I worked to help bring those into being,” he says. Yet, in all his years of giving advocates a voice for worthy causes, Mitchell never penned a slogan for patients demanding lower drug prices.
Mitchell, now 67, found it frustrating that no one was speaking out about drug costs, but he knew how things worked. Most of the nation’s largest patient advocacy groups — for Alzheimer’s, HIV, cancer – accept contributions from pharmaceutical, medical device, and biotech companies. “They put that money to good use for education, nurse hotlines, patient support — services that are incredibly valuable for patients,” Mitchell says. “But if they speak up about drug prices, they can lose that funding.”
When Mitchell was 60, high drug prices became a personal matter. Mitchell learned he had multiple myeloma. For the first five and a half years, an oral chemotherapy drug called Revlimid (lenalidomide) kept the condition at bay. But Mitchell’s monthly out-of-pocket costs for the drug increased exponentially during that time — from $42 to $83 to $250 by 2016. And that was just the part he was responsible for after health insurance. The full retail price rose from $8,000 to $11,000 for a month’s supply.
Mitchell had a good job and health insurance plan. He and his wife Nicole, a breast-cancer survivor who takes tamoxifen, were comfortable. Still, he couldn’t help but think about “people wrestling not only with the disease but also with the high cost of drugs.” An independent analysis of drug coverage showed that Medicare beneficiaries who took Revlimid would pay up to $11,538 out of pocket in 2016. Yet half of all Medicare beneficiaries had incomes below $26,200.
Mitchell knew what he had to do. “Honest-to-god truth, I had an epiphany,” he says. He would retire from his job helping other groups advocate for their health causes, so he could advocate for this one. With his wife’s blessing, Mitchell retired at the end of 2016 and launched Patients for Affordable Drugs. He and his wife committed to pitching in $75,000 per year for the first three years as a demonstration of their commitment to potential funders. “So that I could go to people and say, ‘Look, no one else is doing this. We want to. I’ll kick in this much, and I’ll work for free. Will you help us?’” Earlier this year, the Laura and John Arnold Foundation said “yes,” providing Mitchell’s newly-formed organization with a $500,000 grant.
Since then, Patients for Affordable Drugs has amplified patient voices by collecting their stories and sharing them widely with policymakers and elected officials. The organization is also building a community of patients that can mobilize in support of relevant policy changes. The nonprofit has collected 8,000 stories to date, and the community is 18,000 strong.
“We do not send a letter to any member of Congress, governor, or state legislator that does not include a patient story from their district or state,” Mitchell says. The New York Times and ProPublica call the organization to request patient stories, too.
Prior to the Senate Health Committee hearings on drug pricing in June, Senator Al Franken’s (D-MN) office called Patients for Affordable Drugs to request a patient story from each committee member’s state. Before Maryland passed its new drug-price gouging law, the organization mobilized community members to call their legislators and ask them to support the law. Earlier this year, community members in Nevada wrote letters to Governor Brian Sandoval urging him to sign the insulin price transparency law. Sandoval eventually signed the law in June.
Excited about personalized medicine, Mitchell sees Kymriah (tisagenlecleucel) — the first FDA-approved CAR T-cell therapy for relapsed acute lymphoblastic leukemia — as an example of the field’s immense potential. The therapy yields an 83 percent remission rate. But patients should still be able to afford it, he says.
“If your child’s going to die, you’ll mortgage your house and empty your bank account to save them. But if we bring drugs to market on that basis, we will bankrupt people,” Mitchell says. “The question isn’t how much is it worth to save your child’s life? It’s what is the appropriate return for a lifesaving medication that, in most cases, was invented with taxpayer support, that will allow a company to have good profits, satisfy investors, and keep a robust R&D pipeline?”
Mitchell made this argument in a recent meeting with Novartis executives, where he asked them to price the drug reasonably. Kymriah, like 50 to 60 percent of all major new drugs, was based on taxpayer-funded research through the NIH or federally funded academic medical centers, he says. Taxpayers have already paid a hefty price for this drug: they put $200 million toward the research that helped scientists discover CAR-T cell therapies. They should be able to afford the therapy themselves if one day they need it. Regardless of Mitchell’s pitch, Novartis still set the price at an eye-popping $475,000 per treatment.
“None of this will change,” Mitchell says, “without patients organizing, standing up for themselves, and speaking out.”