Cole's family pushes for policy changes
Today, Cole would be 24 years old. Instead of celebrating milestones in their son's life, his parents are trying to change what they say is a dysfunctional system where medication prices can change overnight and without warning.
According to NBC News, their lawsuit alleges that neither Cole nor his doctor was notified and that Walgreens failed to help him find a temporary solution. Cole left the store with only a rescue inhaler, not meant to manage a serious asthma condition long term.
“It’s not broken. It’s designed to work this way. It’s just hurting us,” Bil Schmidtknecht told NBC.
The family is also calling for legislation that would require at least 90 days' notice before a medication is removed from a health insurance formulary — the list of drugs that insurance plans cover.
In a motion to dismiss the lawsuit, Optum Rx expressed “its deepest sympathies” but said federal law bars the lawsuit from proceeding in state court. NBC reports that the company also claimed that three alternatives with $5 copays were available and that its system instructed Walgreens to contact Cole’s doctor.
In a statement to NBC, Walgreens also offered condolences but declined to comment on specifics, citing patient privacy, adding, “In general, in cases where a medication is not covered by insurance, pharmacy staff may work with the plan, patient, and/or prescriber in an effort to process and dispense the prescription if able.”
“He was just so young, and he had his whole life ahead of him,” Shanon Schmidtknecht told NBC. “And it was so preventable and so unnecessary.”
PBMs, like Optum Rx, work behind the scenes to negotiate which medications insurers cover and at what price. But experts say those decisions often prioritize profit over patients.
PBMs receive “rebates” from drugmakers in exchange for favoring certain drugs, said Gerard Anderson, a professor at Johns Hopkins Bloomberg School of Public Health. “[They] are looking for the drug that makes them the most money,” he told NBC.
Neither patients nor doctors typically know when or why a drug gets dropped from a formulary. And because just three PBMs (CVS Caremark, Express Scripts and Optum Rx) control 80% of U.S. prescriptions, their decisions impact millions.
A January report from the Federal Trade Commission (FTC) found that PBMs have driven up costs on many essential drugs by billions of dollars. The companies have disputed the findings: CVS has said the report “cherry-picked” data, while Optum Rx claimed it helped eligible patients save $1.3 billion in 2024 alone and Express Scripts said the FTC report is “another set of misleading conclusions.”
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Explore better ratesHow to navigate rising prescription costs
For many families, Cole's story may hit close to home — and raises an urgent question: what can everyday Americans do if their prescription suddenly becomes unaffordable? Here are a few steps you can take to protect yourself.
Don’t leave the pharmacy empty-handed. If your insurance no longer covers a potentially lifesaving medication, ask the pharmacist about lower-cost alternatives and contact your doctor immediately. They may be able to prescribe a similar, covered medication.
Check prices at other pharmacies and look for discounts. Use tools like GoodRx or CostPlus to compare prices. Sometimes, the cash price at another pharmacy can be cheaper than going through insurance.
Ask about generic versions. Generic drug prices can often be lower than the brand name drug. Ask your doctor or pharmacist if that is an option.
Call your insurer. If you get a surprise price hike, contact your insurance provider to confirm whether the drug was removed from the formulary and what alternatives are covered.
Stay proactive. Periodically check your insurer’s formulary for changes, especially during open enrollment or after the new year.
See if you have access to an HSA, or health savings account. These are often offered along with high-deductible insurance plans from employers. You can save money, tax-free, to use for medical expenses. Some employers contribute to these funds to offset medical costs.
Cole's parents say they’ll keep fighting, not just for justice for their son but also to push for a system where patients don’t pay the price for hidden profits. His family shared a quote from Cole that they say he'd want people to hear: "Just be happy. Life is too short."
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