Podcast: Rare disease foundation says medical journal misled patients

This is the second in an unplanned, occasional series about real people who are harmed by inaccurate, imbalanced, incomplete, misleading media messages. The first was about a man with glioblastoma brain cancer.

People with rare diseases may hang on any crumb of possible good news more than anyone else. Many have learned how to find and scour medical journal articles for signs of hope.

So it is with people who have primary ciliary dyskinesia or PCD, which, as the National Heart, Lung and Blood Institute explains, “is a rare disease that affects tiny, hair-like structures that line the airways. These structures are called cilia. If the cilia don’t work well, bacteria stay in your airways. This can cause breathing problems, infections, and other disorders. PCD mainly affects the sinuses, ears, and lungs. Some people who have PCD have breathing problems from the moment of birth.”

Early this year, the Journal of Medical Genetics published a paper with this headline: “Gene editing of DNAH11 restores normal cilia motility in primary ciliary dyskinesia.”

JGM logo

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Michele Manion HeadshotMany people with PCD who saw that journal article headline were excited. The news spread through the PCD community on social media like wildfire. And then today’s podcast guest had to temper that enthusiasm because of what the journal headline did not reveal. Our guest is Michele Manion, the executive director of the Primary Ciliary Dyskinesia (PCD) Foundation. She delivers another important message about how media messages – including, or especially, those from medical journals – can harm people.

Meghan with FalconIt’s important to put a human face on such stories. The picture at left is of Michele Manion’s daughter, now in her 30s. She has some significant lung damage. But Manion says that her daughter is not slowed down too much in everyday life.

Manion also sent me group photos of people with PCD and their families – from New York, North Carolina, Minnesota, and this photo of a group in Saint Louis.

St. Louis PCD group

Real people, hanging on every bit of news offering hope about progress in research. Media messengers, including medical journal editors, should keep these faces in mind before they publish.

Key quotes from Michele Manion in the podcast:

  • “We’re in this awkward position where we want patients to be excited about future of genetic therapies; to me this delegitimizes what can be done with gene editing.”
  • “We don’t want to discourage patients about research but we were in a position to have to do that and have to explain the limitations of what had been demonstrated vs. what had appeared to have been demonstrated. That was challenging.”
  • “I don’t think the intent is to harm patients. I think that’s part of the problem. The patient as the ultimate end user isn’t even part of the equation. That’s not who they’re trying to get to. They’re trying to get to funders, more press for their institution and somewhere in that thread the patient is completely lost.”

Thanks to The National Institute for Health Care Management Foundation for providing us with a grant to produce these podcasts.

Credit: podcast editor Cristeta Boarini

Musical bridge in this episode: “Fünf Stücke: Lebhaft” by Paul Hindemith, as played by Academy of St. Martin in the Fields Orchestra

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