We Can Wait No Longer: Congress Needs to Aid Those Trapped in a Health Care Nightmare

By: Claire Sachs, Founder of the Patient Advocate’s Chronicle and a DPAC Champion Corps member

Millions of Americans afflicted with serious illnesses were keeping their fingers tightly

crossed that Congress, before it adjourned last year, would fix the badly broken

prescription drug pricing system that is adversely affecting their lives. Close, but no

cigar, and now it is more urgent than ever that this new Congress act on pharmacy

benefit manager (PBM) reform as soon as possible. As in, this year.

I, like so many others, have been a cog in the wheels of what some popular health

insurance commercials call “major medical” for over four decades. With 16 chronic

diagnoses, I learned from an early age about the difficulty in managing my diseases

while constrained by an insurance company and their vertically integrated PBMs.

Getting information out of these corporations about how things worked and what to

expect was – and is – like squeezing blood out of the proverbial turnip, leaving me with

little control over the factors affecting my health, including the medications I need to live.

Starting in my 20s, in just one year, my insurance company denied my prescription for

an anemia drug, switched my asthma prescription multiple times, and reduced the

number of diabetes test strips and vials of insulin I got per prescription without notice,

which meant I would not have enough. I couldn’t plan, which meant the stability of every

aspect of my diseases was at risk. No matter how many doctors advocated on my

behalf, there was no way to appeal and no way I could afford to pay for these items

myself. And when one disease goes awry, you run the risk that the rest will follow.

Recent congressional and executive branch activity has only heightened the frustration

many of us feel by proposing solutions that they say will lower drug prices, but that fail

to address the true drivers of rising drug costs and restricted medication access.

The current drug pricing and access system is one in which mega-insurance

companies, PBMs, specialty pharmacies and providers are entwined like roses in a

trellis – it’s next to impossible for one to thrive without the other. The Federal Trade

Commission detailed how PBMs are marking up specialty, lifesaving drugs for several

conditions. This came about six months after the agency uncovered how the healthcare

industry’s vertical integration and consolidation has enabled PBMs to avoid

transparency and profit handsomely at the expense of patients like me.

PBMs were originally designed to negotiate lower drug prices with manufacturers. But

with their increased power, they now keep these discounts for themselves. The United

States is the only nation in the world in which these insurer-PBM mega corporations are

able to keep a significant portion of a drug’s cost for themselves. They create

formularies that exclude certain medications, regardless of a doctor’s recommendation,

based on calculations that are not shared with patients and judgments that are made by

internal medical professionals who are not at all familiar with the patient’s case. This

can force us to use less effective alternatives, leading to unnecessary worsening of our

diseases and jeopardizing our health in both the short and long term, as well as

eventually costing more due to the higher cost of worse symptoms and complications.

The financial arrangements between these corporate entities are often shrouded in

secrecy making it difficult – or sometimes even outright impossible – for patients to

understand what is happening to their prescriptions.

Lawmakers have demonstrated that they understand this problem. There were several

bills last Congress intended to separate the cost of drugs from PBM profits, encourage

PBMs to share discounts with consumers and increase transparency. We know that

these bills have strong bipartisan support. Yet, repeatedly, they get a toe on the finish

line of a congressional session but fail to break the tape. The current Congress can’t let

that happen again.

Republicans and Democrats agree on this issue, as do the 60% of Americans who have

at least one chronic disease. We shouldn’t have to feel like fighting to access the

treatments we need, and for which we pay insurance premiums, is a full-time job. It’s

time for Congress to act. We can’t keep waiting.