Michael Costanzo, a Colorado farmer diagnosed with multiple sclerosis in 2016, has a well-honed ritual: Every six months, he takes an IV infusion of a medicine, Rituxan, to manage his disease, which has no cure. Then he figures out how to manage the bill, which costs thousands of dollars.

For a time, the routine held steady: The price billed to his health insurance for one infusion would cost $6,201 to $6,841. His insurance covered most of it, and he paid the rest out of pocket.

But last fall the cost for the same 20-year-old drug and dosage jumped to $10,320, even under the same insurance.

“Why does it have to increase in price all of a sudden?” said Costanzo, who lives in a small town about 50 miles north of Denver. “I think greed is a huge problem.”

As drug prices escalate, politicians in Washington and states have sought to address the problem in limited ways, focusing mostly on insulin, which more than 7 million Americans rely on to manage diabetes and whose price more than doubled from 2012 to 2017.

With comprehensive drug price legislation stalled in Washington during the covid-19 emergency, seven states have enacted insulin payment caps of less than $100 per month. In March, President Trump’s health officials announced a Medicare test project limiting seniors’ monthly out-of-pocket costs to $35. In July, he signed multiple executive actions targeting insulin and a handful of other medications, boasting “it’s going to have an incredible impact.”

Insulin took center stage last year, after emotional demonstrations to lawmakers by mothers who had caravanned to Canada to buy lifesaving medicine for their children at a tenth of the U.S. price.

Those measures have not solved the far more widespread pricing problem that voters, left and right, say Congress must fix.

Underlying the problem is that lawmakers have been at loggerheads about whether the government should have the power to set prices or limit price increases. Prospects for comprehensive legislation slipped away this spring as Congress turned its focus to the pandemic that has killed more than 199,000 Americans and tanked the economy.

So lawmakers played whack-a-mole by targeting insulin. But patients like Costanzo — and millions more — struggle evermore to afford unchecked increases for drugs treating HIV/AIDS, depression, asthma, autoimmune disorders, Type 2 diabetes and other diseases.

A 2019 survey from the Scripps Research Translational Institute published in the Journal of the American Medical Association Network Open found that the costs of 17 top-selling branded drugs more than doubled from 2012 to 2017. Many are household names: Lipitor and Zetia for cholesterol, Advair and Symbicort for asthma, Lyrica for pain and Chantix for smoking cessation. 

“The general public doesn’t realize this is happening with all sorts of drugs,” Costanzo said. “We’re all suffering from increased prices.”

Poster child for greed

Insulin was a natural poster child for pharmaceutical greed, encapsulating America’s problem with high prices in a neat package.

“You have an illustration of the problem — politics gone awry and capitalism gone awry,” said Celinda Lake, a veteran Democratic pollster. “They think of it as being emblematic of everything that’s going on with the system.”

Three companies dominate the market for the diabetes treatment with essentially the same formula as when it was introduced in the 1920s. Not taking insulin can quickly turn fatal. In 2017, Minnesota resident Alec Smith died at age 26 after rationing insulin because he couldn’t afford it.

People dying “is what it takes for Congress to actually commit money and act, and then we solve these problems eventually,” said Andy Slavitt, who was acting head of the Centers for Medicare and Medicaid Services in the Obama administration.

Yet focusing on a single drug could backfire.

“People are angry about their drug prices,” said David Mitchell, founder of Patients for Affordable Drugs, which lobbies Congress and runs campaign ads in support of lower prices. “The people with cancer, the people with autoimmune problems, the people with multiple sclerosis, the people who are taking a variety of drugs that are wildly overpriced, are going to say, ‘Now, wait a minute, what about me?’ ”

University of Pittsburgh researchers in March reported that, without discounts, list prices of branded drugs were rising 9 percent a year. Late last year, House Democrats passed a bill that would let the government set prices for hundreds of drugs and cap seniors’ annual out-of-pocket costs at $2,000. But Trump opposed the bill, calling on Congress to offer one with bipartisan support.

“Let’s be clear — these price hikes aren’t because the medicines got better or there was a significant increase in research and development,” said Sen. Charles E. Grassley (R-Iowa) in a March 5 floor speech. He spearheaded a bipartisan bill with Sen. Ron Wyden (D-Ore.). “No, this was because the pharmaceutical companies could get away with it.” The legislation passed the Senate Finance Committee, which Grassley chairs, but it has not been brought to a full Senate vote.

While Congress fails to act and the topic periodically appears in presidential tweets, patients fend for themselves.

Tara Terminiello has seen the cost of her son’s anti-seizure medication, Topamax, skyrocket to about $1,300 a month, hundreds more than when he started taking it over a decade ago.

Joseph Fabian, a schoolteacher in Southeast Texas, has relied on inhalers since childhood to manage his asthma. In February 2019, he paid $330.98 for three Symbicort inhalers, which he typically uses twice daily.

After a change in his work’s health insurance plan, Fabian’s costs tripled, to $348.95 for one inhaler, he said. According to the Scripps study, the median monthly cost of Symbicort rose from $225 in January 2012 to $308 in December 2017.

“There’s no way I can keep working out $350 every month and a half,” Fabian said.

PhRMA

The Trump administration, Congress and the public are now hoping for pandemic deliverance by potential virus treatments and vaccines from the same companies that have been raising prices. PhRMA, the powerful trade group, has seized the moment with ad campaigns emphasizing the sector’s value.

The stalemate provides little solace for Costanzo, whose medicine, Rituxan, by Genentech, was approved in 1997 by the Food and Drug Administration to treat lymphoma and can be used off-label for multiple sclerosis. It is one of seven medications with price increases unsupported by new clinical evidence, according to the Institute for Clinical and Economic Review. ICER noted that over 24 months, the price after any discounts from drug companies are factored in “increased by almost 14 percent, which results in an estimated increase in drug spending of approximately $549 million.”

Genentech spokeswoman Priscilla White said ICER’s analysis was “significantly limited” because it didn’t account for “meaningful, high-quality, and peer-reviewed evidence supporting the clinical and economic benefits of Rituxan.” White said the company did not increase Rituxan’s price during the period in which Costanzo’s bill rose.

“We take decisions related to the prices of our medicines very seriously,” she said, “taking into consideration their value to patients and society, the investments required to continue discovering new treatments, and the need for broad access.”

Costanzo was prescribed the drug by two neurologists and hasn’t had any acute relapses since starting infusions. He finally did get a reprieve — not thanks to Washington, but by enrolling in a patient discount program operated by Genentech, the drug company that sets Rituxan’s price. He calls it an “absolute lifesaver” financially.

Genentech said its foundation provides free medicine to more than 50,000 patients annually. Costanzo got his first free dose in July.

— Kaiser Health News

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.