There’s a drumbeat for tighter price controls on the cost of branded prescription medicines that are still under patent. On the ballot in Ohio is a measure to mandate discounts for the state at the same level as given the Veterans Administration.  A similar measure lost in California. But no matter what happens in Ohio, efforts to control cost is a big push in Congress.

Clearly, we patients are worried not just about the cost of medicine generally but what access we have to medicines either based on what we can afford or what insurance allows us to have and when. Typically, the “bad guys” related to this issue are identified as the drug companies. But is that fair, and is that the whole story?

As I have been learning about this, and in my opinion, the answer is no.

First, the drug companies are not monolithic. There certainly have been slimeballs jacking up prices on old drugs to maximize profit even if the pain was great to patients. But my experience is these are not the research-based companies. Recently, I visited one and toured their labs and met their scientists. I saw the huge level of investment in facilities and people and heard the stories of how most new drug development leads to dead ends. And when a discovery pans out, it takes years to bring it on the market. I also heard of the expense of developing breakthrough niche drugs, sometimes life-saving, but where the number of people they treat is small—so big research costs and few people to provide a payback.

I’ve also been learning that hospitals contribute a lot to cancer care cost when it comes, especially, to infused therapies. The fairly reasonable markup on drugs that a freestanding, privately held oncology clinic used to charge jumps up when that clinic is absorbed into a hospital group. The hospital group gets deep discounts on the drugs, but the patients, and their insurance companies, only see higher prices.

Now, let’s move on to the insurance companies. They are not blameless. First, they get discounts, too, on oral medicines that are on their drug “formularies.” But the savings are typically not passed on to us patients. Secondly, some insurance companies require “step therapy.” That means they require—no matter what your doctor says—an older, less effective or possibly ineffective medicine, to be tried first. You can suffer in the process and possibly become too debilitated to take a newer medicine later.  I just read that a bill pending in Massachusetts aims to challenge this through speedy insurance appeals. Patients deserve this. 

And then there’s one other piece of the puzzle, pharmacy benefit managers (PBMs). These are middlemen like Express Scripps/Acredo, Briova and Optum. They take a cut and win discounts, but you don’t see the benefit. Here’s a video I just saw that explains this behind-the-scenes process.

None of this is to say big drug companies are blameless. They are not. Personally, I think they should be much more transparent in explaining what affects their costs and the pricing to consumers. And I absolutely hate drug ads on TV. That money could be much better spent for education and support of patients. If ads continue they should be more informative about the research, the time, the cost it took to develop the drug, and thank the patients who took part in clinical trials to validate its use and acknowledge to burden of cost to families.And when it comes to TV ads about cancer, kudos to companies that could advertise and have purposely decided not to. 

In mid-June, I will moderate a session about patients and the affordability of cancer medicines. Affordability is a real worry as researchers are excited about combination therapies with breakthrough medicines but where the cost is out of sight ($200,000+ a year per patient!). The audience for my panel will be pharmaceutical executives, and I will give them an earful. If you are a patient in the Philadelphia/New Jersey area you are welcome to come. I want patients to stand up so the pharma folks see—in-person—who is trying to cope with the high cost of cancer care.

As you can see, it’s complicated. And the pending potential new legislation in Congress just adds uncertainty and worry. My main point here is there’s plenty of blame to go around, and we patients need to put pressure on all these parties to work together—and with transparency—or else we’ll have great cancer care innovation that no one can afford. Write your local congressperson to express your thoughts and concerns

What’s your opinion on this complicated issue? Are there interview topics you would like us to cover? I welcome your comments and wish you and your family the best of health!

Andrew Schorr

Founder, Patient Power, LLC