Here’s a health care reform: Leave it to patients first

According to Webster’s, the linguistic root of the word “celebrity” actually has to do as much with speed as it does with fame. And while we think of the word patient as meaning an individual receiving medical care, even if it’s quite minor. But the word “patient” actually means “one who suffers.”

Why do I offer this? Because as someone who may be known to the public through my television career, my personal identity is more like a patient, than a celebrity.

{mosads}I’m a psoriasis patient. But don’t worry – I’m not suffering anything like millions of other people, often in silence and even more often in shame. It’s time to take this public, and for public policy to get involved, too. More on that later.

While psoriasis seems like a skin condition, it is actually a disease of the immune system that causes cells to overact and reproduce 10 times faster than normal. The result can be a serious skin condition. But other impacts are much greater, including crippling joint pain known as psoriatic arthritis.

Thanks to medical innovation, many forms of psoriasis are treatable. I’m fortunate in that I live my life just as I always have. But I know others are suffering – and from curious public policy choices as much as psoriasis itself.

Here’s an example: I was introduced to the story of David Kottler of Bethesda, Md. Dave is a big, strong, person with the large and charismatic personality to go with it. As a successful restaurant manager, he needs to be on the go, on his feet and a people person all day and all night. 

Even though he has psoriatic arthritis, you’d never know he has any chronic condition – and he was managing just fine thank you – until the infusion schedule in which he receives his life-altering mediation was altered – against his doctor’s recommendation – from every six weeks to every eight weeks. 

Hardly seems a world of difference, and as insurance company-driven adjustments of patient treatment go, this is not one of the more severe. But for Dave, it’s been nothing short of devastating. 

The decision hasn’t just delayed when he receives his treatment – it has rendered the treatments less effective. His arthritic pain is more severe and more often than before. His doctor has heroically fought and maybe the tide can be turned. But let’s take a step back and realize that this may be a stark example, but it’s hardly an uncommon one.

The costs of health care are a challenge and insurance companies will take steps and suggest courses of treatment in line with resources. I get that. But here’s a case that cries out for a reconsideration of how we view patient treatment and understand that seemingly small administrative changes can have massive medical impacts.

This is particularly relevant because this week in Boston, another health care conversation will continue, and I’ll be part of it: Patients Rising’s Series Voices of Value Speak Up brings together patients like me and Dave and others to share and, hopefully, inspire and persuade. Specifically, we will be discussing the emergence of value frameworks, complicated formulas that seek to set and control the prices of medicine.

The event coincides the latest public meeting of a Boston nonprofit called the Institute for Clinical and Economic Research (ICER), which is a leading voice for setting caps on the price of drugs. This week, ICER is targeting psoriasis medicines. It is all but certain to recommend that patient investment is too expensive, that reductions are necessary – but that patient access will be unaffected.

It’s not for me to condemn this perspective, but so many are objecting to the frameworks that I do wonder if the attacks on how much society invests in patient medicine end up eventually, and directly, impacting someone like Dave Kottler. A seemingly benign change altered quickly his life for the worse. 

While I’m no policymaker, here’s my two cents for the next administration, Capitol Hill, and the state legislatures: Define patients by the treatments they receive, not the suffering they endure. Don’t make the system the highest priority. Leave it to the patient interest first.

Mr. Mathers is an actor, author, and advocate.

The views expressed by authors are their own and not the views of The Hill.


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