OPINION:
My uncle spent the last years of his life fighting prostate cancer, waiting for medications that his insurer kept delaying, rerouting or swapping out for something cheaper.
I am a pharmacist who manages cancer therapies for a living. I could not fix it for him.
He was the man who raised me after I moved from Florida for pharmacy school — as close to a father as I ever had. For years, he fought his cancer while also fighting his insurance company, which kept forcing him to switch medications based on what served its bottom line rather than what his doctor had chosen.
That practice has a name: step therapy. It requires patients to fail on (or demonstrate intolerance to) an insurer’s preferred drug before they can access what their physician prescribed.
In early 2022, the process broke down so badly that my uncle went nearly two months without any medication at all. He passed away two years ago.
Step therapy is still happening every day to cancer patients across this country. I see it in my own clinic weekly, where my team manages cancer therapies for patients across a range of blood cancers, including chronic lymphocytic leukemia.
This is the most common form of leukemia in adults. For many patients, the right targeted therapy can mean years of controlled disease, but getting that therapy into a patient’s hands has less to do with science and more to do with what an insurer — or the pharmacy benefit manager behind it — deems financially advantageous.
A physician on my team recently prescribed therapy for a chronic lymphocytic leukemia patient, choosing it deliberately based on its safety and efficacy profile. The pharmacy benefit manager, UnitedHealthcare’s OptumRx, blocked the prescription entirely. The patient could not access the drug her oncologist chose until she first tried and failed on the cheaper alternative.
Never mind that national cancer treatment guidelines do not treat these drugs as interchangeable for all patients. Insurers routinely treat them as interchangeable.
That is not a story about one bad outcome. It is a story about a system in which financial incentives routinely outweigh clinical judgment.
A recent survey found that 97% of community oncology professionals have had patients struggle as a direct result of insurer-imposed step therapy. Even the Centers for Medicare & Medicaid Services has acknowledged the problem and launched a dedicated Medicare Advantage complaint portal for providers to document what we experience every day.
President Trump and Congress delivered a meaningful win for patients by taking on one of the most powerful and least transparent forces in American healthcare: pharmacy benefit managers. The reform legislation signed into law was an important step toward exposing how these middlemen profit from the medicines patients need.
Still, the job is not finished. If Washington is serious about putting patients and doctors back in charge of care, cancer patients cannot be left waiting while insurers and pharmacy benefit managers decide which medicine is worth covering.
Congress must now pass the Safe Step Act, a bipartisan bill backed by more than 200 patient and provider organizations. It would require commonsense exceptions to step therapy when a physician documents medical necessity and would make clear that insurers and pharmacy benefit managers do not get the final word on cancer treatment.
CMS must also take seriously its responsibility to manage Medicare Part D formularies in a way that reflects how cancer medicine actually works. National cancer treatment guidelines are clear that certain cancer drugs cannot be substituted for others.
Insurance companies routinely ignore those guidelines. CMS has the authority to enforce compliance, and it should use it.
House Oversight and Government Reform Committee Chairman James Comer and Rep. Robert Aderholt, chairman of the House Appropriations subcommittee on labor, health & human services, and education, are right to press CMS to use its authority to protect patients from these barriers as part of their investigation into pharmacy benefit manager practices.
It gives me hope that people are finally talking about this. A few years ago, most Americans had never heard of pharmacy benefit managers. Now they have, because these entities have touched enough families that they cannot be ignored. Mine was one of them.
We are living in a remarkable moment for cancer innovation, with treatments unimaginable a generation ago giving patients real chances at longer lives. Now, the tragedy is not only the disease. It is also the bureaucracy that insurers and pharmacy benefit managers have built between patients and the drugs that could help them.
• Zia Khan, Pharm.D., is director of pharmacy at the START Center for Cancer Care in San Antonio, where he has spent his career fighting to get the right treatments into the hands of the right patients at the right time.
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