A Fresno woman with cancer had to fight for key drugs. This must be reformed

Norma Smith has struggled to stay upbeat in the face of life-threatening cancer — multiple myeloma, a blood disease.

As if having a rare form of the illness was not bad enough, the challenge before the Fresno woman and her husband Rod grew exponentially harder when the medicine prescribed by their doctor was denied by their insurance company’s pharmacy.

Unfortunately, the Fresno couple became all too familiar with an arcane term — pharmacy benefit manager. It was this bureaucratic-sounding entity that denied treatment requests of the Smiths and Dr. Ravi Rao, Norma’s oncologist who prescribed the treatments.

And why did the denial occur? Because Rao wanted to use drugs in a different sequence and combination than the pharmacy benefit manager had listed as the usual protocol.

What followed for the Smiths was a months-long battle to overcome that duplicitous decision making by the pharmacy benefit manager, a company called CVS Caremark. By the month, Norma got weaker and her husband’s frustration, anger and despair grew. What should shock anyone reading Carmen George’s account of the Smiths’ experience is that such a situation could easily occur to any of us, given how drugs are dispensed today.

As if there needed to be another example of why health care reform must occur, the Smiths are it. Far from the health insurance company or pharmacy benefit manager providing exactly what they are supposed to — appropriate care to help a critically ill 62-year-old woman — the companies very nearly engaged in medical malpractice.

Who controls the drugs

Most patients and their family members think doctors make the call on what medicines are needed. Wrong. As George’s story showed, pharmacy benefit managers are the faceless layer in the health care system that actually determines what medicines are available to health care plans.

Insurers use PBMs to negotiate drug purchases from pharmaceutical companies. The PBM will draft a list of drugs for the insurer to review, then go to the drug company and offer to include its medicines on the list. The drug company will offer a rebate — hypothetically, $10 off on a drug that normally sells for $100. The PBM then nabs the rebate; the customer gets charged full price.

A PBM sets forth a sequence of drugs to be used when a patient like Norma has a complicated illness. When Rao wanted to prescribe a drug beyond the approved order, the PBM denied the request. Rao did that because he felt the next-level treatment would help her more. Norma’s health got so bad last spring that she nearly died. CVS Caremark took two months to approve one of the treatments.

PBMs are not accountable to anyone. Rao, however, must be licensed by the state to practice medicine and must have malpractice insurance in case a patient dies and he is sued.

PBMs were created to stem the accelerating cost of medicines. One study found that prices of many brand-name drugs increased more than 120 percent since 2008. But what has developed is a system of middle reviewers with little to no medical training. PBMs are making decisions that literally have life-or-death implications.

What is needed

Bills have been introduced in Congress to deal with drug pricing and making that information public. Currently, pharmacy benefit managers and the pharmaceutical companies can keep their agreements a secret.

A group representing cancer patients and their doctors also wants Congress to eliminate the ability of pharmacy benefit managers to create “steps” in how drugs are dispensed so doctors can get what they think is most needed for their patients.

Jim Costa, TJ Cox, Devin Nunes, Kevin McCarthy, take note: As the Valley’s representatives in the House, read the story about the Smiths. Then work to reform this part of the medical system because it badly needs fixing.

Norma Smith is alive today and improving, but only because her husband and doctor refused to give up the fight against a company that seemingly puts profits ahead of patients.