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Why empathy is the missing piece in modern health care

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As I navigate this world, I often feel overwhelmed by its harshness, making peace and harmony seem elusive.
By Michele Luckenbaugh 
Courtesy of KevinMD.com
As I navigate this world, I often feel overwhelmed by its harshness, making peace and harmony seem elusive.

Today, the atmosphere feels particularly heavy with distrust and anger, leaving me caught in a constant “me” versus “you” mindset. At times, it feels as though a corrosive glue has enveloped the workings of my heart, preventing me from experiencing emotions and diminishing my willingness to seek the truth or ensure my story is heard.

Everything in this world seems to be classified as black or white, yet I exist somewhere in the vast space between those two extremes, alongside many others. It often feels like the world wants to dismiss individuality, blurring each unique identity to fit everyone into convenient categories.

I find this to be true when I enter into the realm of health care, where I often lose my sense of self and become defined solely by the disease or the affliction I suffer from. Instead of being seen as a person—someone who is uncertain about her future and needs to understand what’s happening with her body—I am sometimes regarded merely as an “outlier” concerning my condition, just an incidental piece of a larger puzzle.

In these situations, the focus seems to be on inputting data into a computer program rather than looking me in the eye and hearing my words. Appointments feel like tasks to complete quickly before moving on to the next patient, creating a conveyor belt of patients that is always in motion.
So much could be learned if I were given the opportunity to tell my story—why I am in this exam room seeking help. There is far more to me than what is visible in the numbers and charts you scrutinize on the computer screen. For example, my hesitation to visit a doctor for about 10 years was connected to the death of my mother, who died from colon cancer that had metastasized extensively. Before this devastating event, she had made intermittent visits to her doctor for other concerns, but cancer was never addressed as a possibility. To be fair, this occurred many years ago, and the testing for this cancer has improved considerably. Regardless, the fear of hearing bad news for myself prevented me from getting a medical check-up. Had I done so, it may have prevented the heart attack I had several years following her death.

I understand that I am not the only patient you will see today, that your time is valuable, and that your job is challenging. However, how can I entrust my health to your care if I feel I am simply patient 32 on your to-do list of patients for this day?

The practice of medicine is not just about curing an illness or demonstrating a skill; it is also about displaying kindness and empathy to the person who sits before you. It’s about acknowledging their presence, and for those ten minutes or so, to feel that their story has been heard.

Michele Luckenbaugh is a patient advocate. 
Source: Kevin MD
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PUBLIC AND PLANETARY HEALTH

Why drugs cost so much, 101: Medicine monopolies

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We’re always asking: Why do drugs cost so freaking much?

And it’s a complicated question. There are a bunch of reasons — to be sure. But in our reporting over the years, like our stories on insulin and tuberculosis drugs, experts cited one big reason over and over again:

The pharmaceutical industry wages sophisticated legal battles to keep monopoly control over their best selling, most lucrative drugs — blocking generic competition, and increasing their prices along the way.

How did it come to be this way?

In this first episode of a new series – what we’re calling An Arm and a Leg 101 – we’re doing a crash course in the history of the drug patent system.

And the rags-to-riches story of one amazing guy is going to help us do it.

Al Engelberg got schooled in the Art of the Hustle at a young age, collecting dimes at an illegal bingo game on the Atlantic City boardwalk.

Later, he’d put those street smarts to use as he sat at the negotiation table in Washington D.C., hashing out the details of a law that would usher in the generic drug industry as we know it. Then made millions from the rules he helped write.

And as he admits, his legacy is mixed.

On the one hand: The rules Al Engelberg helped write — a grand bargain between generic drugmakers and patent-holding brand pharma companies — unleashed the power of generic drugs to save Americans money.

Nine out of ten prescriptions written today get filled with a generic.

On the other hand: In the process of making his fortune, Al Engelberg discovered loopholes, gaps, and perverse incentives in that grand bargain.

Gaps that allowed brand and generic drugmakers to profit by keeping generics for many hit drugs off the market.

So we now spend more than ever on medicine — and more than 20 percent of Americans report skipping their medication because they can’t afford it.

Al Engelberg, now 86, has spent the last 30 years — and millions of his own dollars — trying to close those gaps.

“I live in a world — a pharma world — where half the people think I’m dead, and the other half wish I was,” he tells us.

You can read more of Al’s story — plus his prescription for fixing the crisis of high drug prices — in his book, Breaking the Medicine Monopolies: Reflections of a Generic Drug Pioneer.

And you can hear our earlier reporting on drug patents here:

John Green vs. Johnson & Johnson (part 1)

John Green vs. Johnson & Johnson (part 2)

The surprising history behind insulin’s absurd price (and some hopeful signs in the wild)

An Arm and a Leg 101 is made possible in part by support from Arnold Ventures.

Send your stories and questions. Or call 724 ARM-N-LEG.

And of course we’d love for you to support this show.

 

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PUBLIC AND PLANETARY HEALTH

The Supreme Court case that could slow generic drugs

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It’s a case you’ve (probably) never heard of: This week, the Supreme Court is hearing oral arguments in Hikma v. Amarin — a legal battle that could impact how much you ultimately pay for prescription drugs.

Here’s why the case matters: As soon as a generic version of a brand-name drug comes to market, its price typically drops by half. Within 10 years, by more than 75%. Meaning: the sooner we have access to generics, the less we pay at the pharmacy counter.

But one of the fastest legal pathways for generic companies to get their drugs to market may be about to get a lot narrower – depending on how the court rules later this year.

Amarin, a brand-name drugmaker, has accused Hikma, a generic company, of encouraging doctors to infringe on their patent for a drug called Vascepa.

The case revolves around the legal concept of skinny labels: a carveout in drug patent law that allows generic companies to bring drugs to market when one of the brand-name drug’s patents has expired, but others haven’t.

And it raises the (unexpected) question of whether it’s OK for a generic drug company to call their product the generic version of something.

Legal experts help us unpack the nerdy details — including how this case came to be — and what’s at stake for both generic drug companies and anyone looking forward to one day paying less for an expensive brand-name drug.

Want to learn how these drug monopolies work – and came to be in the first place? Check out our previous episode: Why drugs cost so much, 101: Medicine monopolies

Send your stories and questions. Or call 724 ARM-N-LEG.

And of course we’d love for you to support this show.

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Flip the Script

Why Health Flips the Script on Peace

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