The murky world of who determines drug access and prices

I was first diagnosed with multiple sclerosis (MS) in August 1994. It was a devastating moment for me and my family. MS is a chronic disease that attacks the central nervous system and leads to muscle weakness, difficulty coordinating movement, vision problems and other symptoms. While there is no cure, medications are available to treat the symptoms and improve one's quality of life.

Once the shock of the diagnosis diminished, my care team and I turned to treatment options. It was at this time that I learned of a health care entity known as a pharmacy benefit manager, or PBM.

PBMs are huge health care players that few know about. As I worked with my physician to find the right drugs to treat my condition, I was dumbfounded — and outraged — that a PBM was able to deny me the drugs that my physician had prescribed.

PBMs were created in the late 1960s to help health plans, employers and government-funded health care payers find the best price for pharmaceuticals by using their large purchasing power to find savings. They were designed to pass those savings on to purchasers, withholding a portion as profit. In the beginning, these PBMs were well intended, but since have lost their way and now put profits over a patient's welfare.

In 2017, I introduced a bill in the Minnesota Legislature that would prohibit health plans from changing the drug formulary — the level of coverage a plan offers for various medications — for patients who are currently taking a drug therapy. Patients — particularly those with chronic conditions such as MS, mental illness, epilepsy and others — often shop for health insurance based on which plans cover the drugs they need. Surprisingly, nothing in state law precludes a health plan and its PBM from changing that drug coverage in the middle of an enrollee's contract year.

Contracts, apparently, apply only to consumers who purchase health insurance, and not to health plans.

All too often, PBMs seek to grant patients access to the drugs from which the PBM receives the largest cut of the proceeds, not the drugs patients need. Coming in the form of rebates, this financing mechanism puts profits ahead of patient health.

Prior authorization requirements can interfere with the physician-patient relationship and often lead to poor patient outcomes. As my physician knows well, altering a patient's medications — particularly for patients with chronic conditions — can have disastrous health impacts.

I'm luckier than most. With my megaphone as a legislator, I have been able to tell my story in a way that attracts the attention of these PBMs. In fact, after I introduced my bill and shared my story, representatives of my PBM contacted me to offer to "fix" my problem.

This is disgraceful. What about all of the other patients in the same situation? This same level of responsiveness belongs to all patients, not just those who have power because they hold office.

My ultimate goal, and the goal we should all have, is to inject some needed transparency into how drugs are priced. We need to shed light on who is setting the price on pharmaceuticals and where the money is going. Are the supposed savings from PBMs going to employers? To consumers? To PBM profits?

Anyone directly involved in agriculture knows the costs of their inputs — feed, veterinary care, labor, etc. — and we have an understanding of the value of our product before sending it to market. Shouldn't we demand the same kind of transparency within the pharmaceutical industry? Who is making the decision on which drugs are covered? Who is making money on the decision? Am I getting the right drug at the best price I can? Most of us can't answer that right now.