5-Star Friday: Unexpected endings

By | September 9, 2018

Like a classic thriller from the silver screen, today’s 5-star selections feature an unexpected twist — whether that’s the surprising path to recovery that some people find from opioid addiction; the shocking way that a patient group found itself exploited by the drug industry; or the remarkable truth about your metabolism and how it differs from the portrayal in media messages.

What’s not surprising? That there are lots of talented health care journalists out there bringing you these outstanding stories, and that our staff at HealthNewsReview.org is working hard to shine a light on them.

Kevin Lomangino

Kevin Lomangino | Managing Editor

The High Cost of Hope: When the Parallel Interests of Pharma and Families Collide • by Emily Kopp and Jay Hancock • Kaiser Health News

Partnerships between pharmaceutical companies and patient groups raise a number of ethical concerns, not the least of which is whether patients are being exploited to boost the bottom line. That’s a fear that gains fresh currency in this story from Emily Kopp and Jay Hancock of Kaiser Health News, which documents an unsettling case of corporate profiteering off children with a rare and fatal disease called cystinosis.

Patient families dutifully raised millions needed for research on a lifesaving treatment for cystinosis called Procysbi, Kopp and Hancock write, only to have the fittingly named Raptor Pharmaceutical (since bought by Horizon Pharma) swoop in and buy the rights to the drug. It set a price of $ 300,000 per year that even the company CEO thought was exorbitant. (He was overruled by the board of directors.) Now it’s five years down the line and drug companies, executives, and UC San Diego have all reaped millions from patients who have no other options.

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“Meanwhile the nonprofit organization started by families to develop the medicine, which held no business rights, got nothing,” Kopp and Hancock write. What’s more, they say, the company has “breached sensitive boundaries around their tightknit community to increase sales.”

It’s another example of what can go wrong with a system that has precious few checks on the price of prescription medicines and which is built to maximize profit. We’ve seen it time and again: Desperate families will pay and society will cover the expense. Pharmaceutical companies will exploit their advantage and call it the cost of innovation.

Joy Victory

Joy Victory Deputy | Managing Editor

What I learned about weight loss from spending a day inside a metabolic chamber • by Julia Belluz • Vox

Google “metabolism boosters” and you’ll get hundreds of thousands of questionable web pages promising solutions–like this “14 mega metabolism boosters” slideshow/clickbait from the Dr. Oz Show. As journalist Julia Belluz reveals, though, individual metabolism is still a poorly understood area in nutrition science–and there is no simple way to “boost” metabolism. To show just how complicated it can get, she spent 24 hours in one of the world’s few airtight “metabolic chambers” at the National Institutes of Health. Literally everything she did was closely measured–including the amount of carbon dioxide she expelled.

“Being a self-imposed NIH prisoner was an exciting and rare opportunity — to see one of the most important scientific tools in obesity research up close and to finally get some answers on this long-simmering question about my body,” she writes.

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“But my day in the chamber revealed the depths of my misunderstanding about my metabolism. And that the obsession with metabolism speed is distracting, destructive, and based on a myth about obesity and weight management.”

Jill U. Adams

Jill U. Adams | Associate Editor

Addiction Doesn’t Always Last a Lifetime • by Maia Szalavitz • New York Times

This deeply reported piece tells the stories of six individuals who were once addicted to opioids and have since recovered. Taken together, the stories present a more nuanced and varied picture of addiction and recovery than is usually depicted in newspapers and magazines. 

The two key takeaways are ones that are sorely missing from the usual news and conversation about the nation’s opioid addiction problem and how to fix it. First: The evidence is limited, but research shows that most people with opioid use disorder will eventually pull themselves out of trouble — although it may take many years and multiple attempts at recovery. That’s why harm prevention, specifically reducing overdose deaths, is so important. People need to stay alive to recover. Second: There are multiple paths to recovery. Twelve-step programs work for some, but others recover without. Medications such as buprenorphine are helpful to many, but some manage without. Some people find their own paths to remission, which can involve things like spirituality, creative pursuits, exercise, relationships, or community service. 

Szalavitz’s asserts that by telling these stories, we can improve the odds for those currently addicted. In her words: “We need to recognize and champion recovery — and the wide variety of forms it can take.”

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Mary Chris Jaklevic

Mary Chris Jaklevic | Reporter-Editor

The opioid crisis hits home. Mine. • by Bill Sternberg • USA Today

We sometimes castigate journalists for reporting their own personal stories, but Sternberg shows how powerful a first-person narrative can be when it’s done right.

The paper’s editorial page editor pairs his family’s grief at losing their son to an overdose (“Scott’s death left a hole in our hearts and a void in our lives.”) with a fact-based account of treatment obstacles (“Unfortunately, in many places it’s still easier to get heroin than it is to get medication-assisted treatment.”).

It’s a point-of-view piece that’s heavy on context, deftly summarizing the history of the opioid crisis and the evolution of thinking on the nature of addiction.

Sternberg busts myths: “We don’t talk about letting heart patients or diabetics hit bottom before giving them treatment.”

He points to villains: “When you dig behind the flashy websites and implausibly high claims of success, you discover that some treatment programs are essentially scams set up to harvest the 30 days of treatment that many insurance policies cover.”

If you read Szalavitz’s opinion piece in the Times, above, to find hope, read this one to find the ways we still need to work on smoothing the path to recovery.

Please Note: These stories have not been subject to our rigorous, 10-criteria systematic review for accuracy, balance, and completeness. Rather, they represent pieces of health care journalism and opinion writing that members of our staff found compelling and wanted to share with others.

5-Star Friday is a regular feature on HealthNewsReview.org. You can find a list of previous installments HERE.

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