Get the story on America’s drug price problem

Cancer patient David Mitchell began with a photograph of himself reclining in a bed, receiving an intravenous drug treatment for a blood cancer called multiple myeloma.

“That picture that you see is what I was doing yesterday for five hours and to the tune of $21,000,” said Mitchell in a Center for Health Journalism webinar this week. “This journey brought me face to face with the challenges people confront with high-priced drugs and a fundamental truth: that drugs don’t work if people can’t afford them.”

Mitchell, the founder of the nonprofit Patients for Affordable Drugs, was joined by Dr. Aaron S. Kesselheim, an associate professor of medicine at Harvard Medical School and a faculty member in the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital; and Katie Thomas, a staff writer at the New York Times who covers the business of health care, with a focus on the drug industry.

As experts debate the efficacy of the Trump’s administration’s recently announced plan to tackle drug prices this week, the webinar focused on why the prices are so high in the first place and offered tips and tools to help journalists to find “real” people and vet their stories, in any coverage area.

Why are drug prices so high?

Drug prices are so high for three main reasons, Harvard’s Kesselheim said. For one, the United States allows pharmaceutical companies to charge whatever the market bears. In addition, there are guaranteed periods of market exclusivity, meaning times in which these drugs are protected from competition from generics. And, during these monopoly periods, it’s hard for insurers to negotiate with drug companies due to various laws and restrictions.

For example, Medicare – which accounts for about one-third of the nation’s prescription drug expenditures — cannot negotiate drug prices for part D prescription drugs, he said.

“This is unlike any other goods or service Medicare covers,” he added, pointing to other negotiable health care services such as X-rays and physician fees.

“We have such a well-functioning market in generic drug whereas we have an inefficient, poorly functioning market for brand-name prescription drugs,” Kesselheim said.  

Along with authorizing Medicare to negotiate prices, other policy solutions include giving public payors more latitude to substitute a higher-cost drug for a cheaper drug that works just as well, thereby allowing more competition.

Kesselheim also addressed common perceptions surrounding the drug debate, such as the idea that paying less for drugs would undercut innovation, resulting in fewer new breakthrough drugs.

While some say it’s politically impossible to lower drug prices, he pointed to a 2015 study from the Kaiser Family Foundation that 72 percent of Americans “feel that drug costs are unreasonable.”

Finding and vetting real stories  

Any good pricing story needs to be centered around how it affects people, said New York Times reporter Katie Thomas, who shared her reporting strategies.

The first place to start is by querying your outlet’s readers, a useful approach that also has some limitations. Along with alerting competitors to your next story, there’s also the risk of getting caught in the echo chamber of a particular audience. To accurately reflect the country’s demographics, she also searches for patients on Twitter, fundraising sites such as GoFundMe, and Facebook groups such as Paying Till It Hurts.

Once you find someone willing to talk, “your task is really just beginning,” she said.

After she has an initial conversation, she asks patients to share as many documents as possible. It’s also helpful to talk the patient’s physician and insurance company (insurance companies will supply a waiver form allowing them to talk about the case). And, it’s important to ask about financial information since high drug costs often spill over into other aspects of people’s lives.

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She advised reporters to search online for the patient’s name. And, if people can’t back up their story, consider moving on.

“You want to go with the strongest story you have,” she said. And you “want to understand where they’re coming from. Do they have another agenda?”

Thomas also directed journalists to some of the websites she uses, such as GoodRX, which shows a drug’s estimated cash price, and the Kaiser Family Foundation, which offers studies and reports on drug pricing. For insights into the complex pharmaceutical world, she pointed to Adam Fein, CEO of Drug Channels Institute, and Peter Bach, the director of Memorial Sloan Kettering's Center for Health Policy and Outcomes.

Useful databases include ProPublica’s Dollars for Docs and the federal Open Payments, which can reveal contributions doctors receive from drug companies.

Thomas shared how one patient’s story can lead to a much broader, impactful story. Through social media, she noticed a woman commenting on how her insurer pushed her toward a less expensive, more addictive drug. Thomas found and messaged the woman via her Etsy profile, spoke to her, reviewed her documents, talked to her doctor, and eventually wrote this story  about insurers restricting more expensive painkillers.

The story “was made a lot stronger by the fact that we featured the story of her and other people who are living this firsthand.”

Elevating patient stories

Mitchell’s journey as a patient advocate began in 2010 when he was diagnosed with multiple myeloma, which is treatable but incurable.

He described his frustration at the lack of patient groups speaking out against sky-high drug prices — something he attributes to the fact that many such groups receive contributions from pharmaceutical companies.

Last year, he launched Patients for Affordable Drugs, to amplify the voice of patients struggling with drug prices. The nonprofit, which receives no money from drug companies, has collected 13,000 patient stories across the country – many of which are searchable on the site and can be further explored by reporters looking for story leads.

“We’re building a community of patients that can be mobilized in support of policies that will lower drug prices,” Mitchell said. 

The group supports state-level legislation such as SB 17 in California, which makes drug pricing more transparent. They arrange meetings with legislators, during which patients share how current policies impact their lives.

Mitchell also shared his thoughts on the President’s plan to lower prices, such as Trump’s comment that other countries are "freeloading." In reality, they’re negotiating for better drug prices, he said.

“They’re doing what I’d like my government to do for me, and millions of other patients.”