I was recently introduced to Brian Howard, features editor of Philadelphia magazine, through a mutual friend. She said I must read his in-depth article about the exorbitant prices of MS drugs and how bureaucracy stands in the way of fair pricing. It delves into the same questions we ask: why are MS medications prohibitively priced, how are they negotiated, and how can we afford them?

I asked for Mr. Howard's permission to share his piece on An Empowered Spirit. I urge you to read on to learn about this important subject. I hope it will empower you to make informed decisions about the medications you use to manage your MS. 

Sky-high prices. Confusing co-pays. Maddening bureaucracy. Why is our pharmaceutical system such an impenetrable mess. 

By Brian Howard

Photo Credit: Ian Shiver

I was at the end of the long table in the conference room when I realized the drugs had become a problem.

As I tried to focus on the presentation — some suit droning on about tax benefits and pricing tiers — I zoned out, and my face became flushed. Burning-hot rage pulsed across my skin, crackled down to my fingertips, then shot back. I wasn’t sure I could make it out of the room without doing something I’d regret.

I’d always known that it could come to this — that the compounds I’d been injecting all these years could have consequences. Back then, even though I knew vaguely how much it all “cost,” someone else was always picking up the tab. And because I liked how the drugs made me feel — safe — I didn’t ask too many questions. You can’t put a price tag on security.

But suddenly, there was a price tag. And a big one. Specifically: 20 percent co-insurance after deductible.

This was going to get expensive.

I’m on drugs for multiple sclerosis and have been since 2004. MS meds are what are called maintenance drugs, meaning you take them daily or weekly from the moment of diagnosis till death or untenable side effects do you part. They’re also some of the most jaw-droppingly expensive drugs on the market. Today, in 2019, the four different name-brand medications I’ve been prescribed at different points in my treatment list for between $75,816 and $98,899. Per year. Prices are indeed high. And they’re going up fast.

Like everyone else, I’d been hearing the drumbeat: The cost of prescription drugs was out of control. But because the insurance plans I’ve been on had decent-enough prescription drug coverage — my meds had generally cost me a co-pay in the $100-to-$150-per-month range — I’d been shielded from the issue. And a few years back, I discovered that if you ask, some drug manufacturers will actually pay your co-pays for you. So I was getting drugs that listed for a decent annual salary for the cost of my modest-by-comparison health-insurance premiums. I didn’t know who was paying how much of those prices — honestly, they seemed too absurd to be real. All I knew was that it wasn’t me.

But as I sat in the conference room for my company’s annual benefits presentation last 

December, I got a cold dose of reality — and became another of the millions of Americans incensed by the skyrocketing prices pharmaceutical companies charge for their products and the byzantine, competition-squelching health-care system that allows those prices to escalate unchecked.

This year, Philly Mag’s parent company, Metro Corp, offered its employees, as it has each of the six years I’ve worked here, two plans through United Healthcare. What’s different this year is that due to the ballooning price of coverage, both Metro Corp plans came with prescription drug benefits that treat medications in the two highest tiers of its “formulary” (that’s insurer-speak for the list of drugs that are covered) on a co-insurance model, meaning I would have to pay “full price” for my medications until I hit my family deductible of $4,000 per year, and then 20 percent of the price afterward until I hit my individual out-of-pocket maximum of $6,650 per year. When all the math was done, it amounted to around $3,180 in additional, unexpected health-care costs over what I paid last year. It’s effectively a $3,180 pay cut — never good, and especially troubling heading into a year when you’re expecting your second daughter. My wife’s work provides good coverage for her but charges through the nose to add family.

I had to do some emergency rebudgeting. I’d need to find out what this drug was going to cost, fast. And, masochist that I am, I wanted to find out why it costs what it does.

What I learned: The pricing methods of drug companies in this country — largely unregulated by an innovation-obsessed, lobbyist-beset government and buttressed by taxpayer-funded research — are a big mystery. Thanks to secret negotiations, the prices that pharmaceutical companies list are different from the prices for your insurance company, which are different from the prices for your pharmacy. America’s health-care system is the most expensive and pointlessly complicated in the world — “a classic example of market failure,” according to Wendell Potter, the Philly-based former Cigna exec turned whistle-blower who’s now the muckraking publisher of Tarbell, an investigative journalism site focused on the health-care industrial complex.

As a result, it seems entirely possible that no two people in the country pay the same price for the same drug. And thanks to the bureaucracy that’s sprung up around health care like a boomtown, getting answers to even the most basic questions is increasingly difficult. Ultimately, what I’ve learned is that you might be able to find out how much a drug will cost you, but unless legislators take action, you’ll never know why.

To continue reading the article in full click this link for Philadelphia Magazine.