Family Forced by Cigna's PBM to Make a 9-Hour Drive for a Child’s Life-Saving Medication

Cristi Waltz’s fight for her grandson’s medicine exposes the dark underbelly of pharmacy benefit managers — and why lawmakers on both sides of the aisle are demanding change.

Cristi Waltz’s 12-year-old grandson Isaac went several days without telling his mom about the strange color of his urine – bright yellow, then dark purple – until it triggered a frantic, hour-plus drive from their community in rural western Pennsylvania to the emergency room at Children’s Hospital in Pittsburgh.

It was there, in February, that doctors stabilized Isaac, now a 7th-grader, and his shockingly low blood count, then conducted the battery of tests that determined he suffered from a rare condition called autoimmune hemolytic anemia, or AIHA. A hematologist determined that a monthly dose of an infusion drug could bring back his healthy boyhood.

But in the Kafkaesque world of 21st century U.S. health care, solving one problem has a way of causing new ones – especially when the only-in-America middle layer of bureaucracy known as pharmacy benefit managers, or PBMs, enter the picture.

The Waltz family inquired at their local drug store, the 150-year-old, independent Duncansville Pharmacy, about filling the hematologist’s prescription for Rituxin, to be administered at an area medical center. They were told that their plan’s PBM, Cigna’s Express Scripts, would not allow it to be handled outside their system.

Express Scripts – one of three PBMs that dominate the U.S. market after years of consolidation (Cigna bought it in 2018) – said the family’s only options were to receive the expensive drug by mail, or pick it up at a facility in Philadelphia, a nine-hour round-trip drive for them on a costly toll road, the Pennsylvania Turnpike.

The route between Duncansville and Philadelphia, Pennsylvania.

The mail option seemed like the obvious way to go, until Isaac’s first shipment didn’t show up at their home in tiny Duncansville (population 1,258). So they drove to Philadelphia to get the crucial medicine for Isaac, and – after repeated calls to Express Scripts, which insisted there was no other option – Cristi Waltz and her daughter decided to make the trip every month. Waltz, who handles titles for a local car dealership, estimated the toll, gas, lunch stop and, most importantly, missing a day of work, costs about $500 per trip.

“We can’t take that chance with his medicine, or his life,” Waltz said of the monthly drive across Pennsylvania forced by the decision of the prescription-drug “middleman.”

And Waltz now has her own ongoing struggle with a PBM, since Isaac’s diagnosis helped her doctors realize that she had symptoms caused by AIHA, which had gone undiagnosed for years. In her case, her PBM won’t approve Rituxan instead of steroid treatments that so far have proved less effective. 

The experiences turned Waltz into an activist who is telling her story and lobbying Congress to crack down on PBM abuses.

I met Waltz and learned about her family’s story on a bitterly cold day outside the U.S. Capitol at an extraordinary event last week: a bipartisan congressional news conference attended by House members from both parties and a Republican senator. Even at the contentious dawn of a new Donald Trump administration, liberals and conservatives were united in their desire to break up the PBM chokehold on Americans’ access to their increasingly unaffordable prescription drugs.

Images from outside the U.S. Capitol including PBM reform posters; Rep. Earl L. “Buddy” Carter; and Cristi Waltz.

“Democrats and Republicans are here today because we all agree,” Rep. Nanette Díaz Barragán, a Democrat from the ocean communities south of Los Angeles, told the news conference, urging: “Let’s put politics aside and get this done.”

The complaints from the steady stream of lawmakers who stepped up to the microphone cut across every divide in American life. They talked about how a cartel that takes billions of dollars out of America’s health care system  drives trusted local pharmacies out of business while raising prices, and creates unnecessary inconvenience or denies coverage to patients. They came from red states and blue states, and urban and rural districts.

“PBMs are predators,” said Rep. Adrian Smith, a Republican who represents a rural swath of western Nebraska and joined other lawmakers in saying the loss of an estimated one independent pharmacy every day in America has been devastating to districts like his. In small towns like Alliance, Nebraska, where the one drug store recently closed, his constituents have had to switch to less dependable mail-order prescription drugs. He called PBMs “enemies of the American people, because they are ruining local pharmacies.”

The lawmakers, including Georgia’s Republican Rep. Buddy Carter – currently one of two pharmacists serving in the House, and arguably the most ferocious critic of PBMs on Capitol Hill – shared a sense of urgency. With less than a month left in the current session of Congress, and with President Joe Biden, who made lowering prescription drug costs a priority, in the Oval Office for another six weeks, advocates for checks on the PBM industry believe this is their best opportunity to get something done.

Carter and the other lawmakers at the news conference – including Oklahoma Sen. James Lankford – are urging final passage of the Lower Costs, More Transparency Act, which passed the full House one year ago but has languished in the Senate. That bill would require extensive reporting of costs, profits and rebates by PBMs – a necessary precursor to any future reforms – as well as an end to percentage pricing (known in the industry as “spread pricing”), which boosts costs for Medicaid.

The legislators also support the Telehealth Modernization Act, a second bill that couples major PBM reforms with measures to upgrade health care in rural communities. 

 “The insurance lobby, and the insurance industry, has a stranglehold on this town,” said Rep. Jake Auchincloss, a Massachusetts Democrat. He noted that PBMs once served a useful function in the health care chain by steering patients from costly Big Pharma drugs to money-saving generics. But “then they got greedy – they are taking upwards of $300 billion out of the system and putting nothing back.”

Now, as health insurers have grown to massive size not only by buying smaller competitors but also by buying their way deeply into health care delivery, the PBM world is dominated by just three conglomerates: CVS, which owns both Aetna and Caremark, UnitedHealth, which owns OptumRx, and Cigna, whose Express Scripts division put up the roadblocks facing Waltz’s grandson.

The Waltzes’ story is a clear example of the problems. Independent drug stories like the Duncansville Pharmacy struggle to supply the medicines that patients need, or sometimes face unfriendly audits, in which the PBMs seek to “claw back” payments from these competitors of their own chains. They also demand rebates that are not passed down to customers.

Like Cristi Waltz and her grandson, many others are dealing with claims denials, higher costs, or hurdles like their monthly drive to Philadelphia. And the corrupted PBM system depends on patients willing to take “no” for an answer.

Cristi Waltz is not that kind of person.

After months of frustrating dealings with Express Scripts, a fellow churchgoer told her about a patient advocacy group that pushes for PBM reform. She volunteered to tell her story and has been to Capitol Hill twice this year. She’s lobbied her two senators – Democrats John Fetterman and Bob Casey – and members of the Pennsylvania House delegation. Staffers for her local member of Congress, Republican Rep. John Joyce, are also currently working on her behalf to press Express Scripts for a solution that would guarantee the drug at their local hospital without the trips across state.

For Waltz, “the biggest issue is the transparency – what they are doing in the dark.” She believes, as do the lawmakers working on the issue, that exposing how PBMs make their profits is critical because, “they’re wanting to hide their numbers.” She also believes that if PBMs get rebates, those dollars should lower patients’ costs, not line the pockets of executives.

The good news is that the treatments that have necessitated the Waltzes’ nine-hour round trip to Philadelphia have turned things around for 12-year-old Isaac, whose anemia is under control. He is even back to playing ice hockey. “He’s my love bug,” Waltz beamed.

Not every sick child in the U.S. has a tiger grandmother able to put so much into the battle. Thus the urgent need for legislation. “I want people to realize they can get more involved with their health care,” Waltz said. “If you fight hard, you can have a positive impact.”