When I must tell a patient that she or he has cancer, that diagnosis comes with the explicit promise that I will provide timely treatment, including medicines aimed at curing cancer or extending life as long as possible.
But an insidious interloper now often comes between me and my patients. I’m talking about pharmacy benefit managers (PBMs), the middlemen that have introduced a bureaucratic and nightmarish system of delays and denials into filling prescriptions.
I’m not alone.
An oncologist in Florida determined that her patient with metastatic kidney cancer needed to start taking a standard, first-line oral medication. But the patient’s pharmacy benefit manager decided it knew better and refused to authorize the medication unless a surgeon first performed surgery to remove a tumor on the patient’s kidney — despite the fact that the patient’s surgeon had already determined that the procedure was too risky and the patient wasn’t a candidate for surgery, something the surgeon had previously told the PBM.
For three months, the patient’s oncologist and surgeon appealed the pharmacy benefit manager’s denial so the patient could receive the treatment he desperately needed. Although the PBM ultimately relented, the patient will never get those three months back. For anyone battling cancer, delaying treatment and allowing the disease to progress by even a week can mean the difference between life and death.
There’s the story of a young mother in Tennessee who was beating the odds against stage 4 pancreatic cancer but was left with a dangerously suppressed immune system. She was forced to delay critical treatment because the medicine she needed was on backorder at her pharmacy benefit manager’s mail-order pharmacy and the company wouldn’t pay for her to get it from her doctor’s office.
Working with cancer care providers across the country, the Community Oncology Alliance has compiled hundreds of these horror stories. They demonstrate time and again how pharmacy benefit managers come between patients and their doctors, with little regard for the pain and suffering they inflict.
Pharmacy benefit managers were supposed to help bring down the cost of drugs by negotiating with competing drug companies and by “encouraging consumers to use the most cost-effective drugs.” But they have done the opposite, fueling higher drug prices through manufacturer rebates and by extorting fees from pharmacy providers.
Those rebates and fees were the focus of a Senate Finance Committee hearing featuring top executives of five pharmacy benefit managers last month. The chair of the committee, Iowa Republican Chuck Grassley, noted that “the current system is so opaque that it’s easy to see why there are many questions about PBMs’ motives and practices.”
For health care professionals on the front lines of delivering timely care to people with cancer, there is no debate about the need for transparency: Pharmacy benefit managers are a roadblock to potentially lifesaving cancer care. For many of our patients, the groundbreaking cancer drugs they see in headlines are often out of reach because of PBM practices that restrict or delay access. While they won’t admit it, there is no doubt that every dollar a pharmacy benefit manager saves by stopping or redirecting a prescription means more upside for their profits.
The pharmacy benefit manager business model is built on a lucrative and shadowy network of drug manufacturer rebates and pharmacy fees squeezed from every level of the health care system. Congress is right to look into these rebates and fees to better understand exactly what roles pharmacy benefit managers play in the complex economics of drug prices.
A veneer of governmental indifference seems to be helping pharmacy benefit managers protect their egregious profits. But the system isn’t working for patients with cancer or the millions of other Americans who struggle to overcome red tape to get the medications they need.
Americans deserve better from our health care system and we should be able to count on our elected officials to support affordable, convenient, cutting-edge, patient-centered care. This includes access to the cancer therapies they need, when and where they need them.
The White House, members of Congress, policymakers, and the American public should ask themselves this important question: If your mom was facing breast cancer or your son had brain cancer, do you want a pharmacy benefit manager determining their care, or their doctor?
Jeff Vacirca, M.D., is CEO of New York Cancer and Blood Specialists and the immediate past president of the Community Oncology Alliance. The author reports being medical director of ION Solutions and on the board of directors of OneOncology, Odonate, and Spectrum Pharmaceuticals (SPPI).