Democratic presidential candidates have devoted plenty of debate time to health care and pointed fingers at a familiar bogeyman: the all-powerful pharmaceutical industry.
They are right to be outraged at high drug prices and the affordability crisis millions of Americans face every day, but they missed a huge problem no presidential candidate is talking about: the detrimental role of unseen and seemingly anonymous middlemen — pharmacy benefit managers.
Exasperated, New York oncologist Jeff Vacirca said medical middlemen have “inflicted cancer patients with an unspeakably bureaucratic maze of delays and denials into my job of filling life-saving prescriptions” for patients.
Ostensibly empowered to negotiate lower drug prices for insurers, the PBMs play a far different, more sinister role.
They skim enormous profits from prescriptions through secret rebates, obscure fees and other slimy tactics. In oncology for example, it is standard business practice for PBMs to slow-walk critically needed patient prescriptions or deny them altogether, tangling up what is supposed to be a simple process into a breathtaking, and possibly fatal, bureaucratic morass.
Today, the biggest PBMs are vertically integrated and own their own mail-order specialty pharmacies that carry oral oncology drugs and other therapies for life-threatening conditions. Some PBMs require patients to fill their prescriptions in PBM-owned pharmacies, even though many oncology practices have their own pharmacies and can sell a patient their medications on the spot.
It’s not unusual for patients to walk past their cancer clinic’s pharmacy — which has their oral chemo medicine — and be forced to wait days or weeks for medicine from a mail-order pharmacy owned by a PBM.
The result is a nation of sick and terrified cancer patients whose severe illnesses are exacerbated by middlemen whom the patients were saddled with unwillingly. Then, they are forced to wait in limbo for medicine that will save their lives, slow the progression of their diseases, or simply make them comfortable in their final days. Time is of the essence, especially with fast-spreading cancers.
One such patient is retired special education teacher Norma Smith of Fresno, Calif., whose PBM horror story was profiled recently in the Fresno Bee. The process of dealing with a PBM was dehumanizing. The 62-year-old with an advanced blood cancer called multiple myeloma said it is “hard enough to fight cancer with the right drugs in you; your life hangs in the balance and you know you’re going to die.”
If the PBM victimization of cancer patients, which the Community Oncology Alliance has been documenting for years, doesn’t shock presidential candidates, they might be outraged to hear that the PBMs just got a gift from Uncle Sam just last month.
The Trump administration killed a provision — the so-called rebate rule— that would have overhauled the nation’s secretive drug rebate system that has caused enormous pain and confusion among patients with cancer and other serious diseases. The proposed rule would have lowered drug prices for all Americans by finally ensuring that patients receive the benefit of negotiated drug discounts, not plan sponsors and PBMs.
If this hard-charging administration can’t slay the PBM behemoth, then who can? That is a question we should be asking each of our presidential candidates directly. We should know just what exactly it is they want to do to stop PBM abuses so that patients with cancer and other serious diseases don’t have to suffer anymore.
Failure to act means that drug prices will remain high and PBMs, who add no real value to patient health, will continue to receive the benefit of the discounts from manufacturers, and reap enormous profits as a result.
Until then, however, the horror stories continue. Sadly, as Norma Smith told the Fresno Bee: “I’m a human being. I’m not a used car. I have feelings. I’m a person. I want to live. I want to spend time with my grandchildren. I want to quilt. I want to do things. I want to live.”
Ted Okon is executive director of the Community Oncology Alliance, an association of independent cancer practices dedicated to ensuring patients have local, affordable access to cancer care in the communities where they live and work.