Govt committee exploits Ice Bucket Challenge ‘breakthrough’ to plug industry-friendly ‘Cures Act’

Kevin Lomangino is the managing editor of HealthNewsReview.org. He tweets as @klomangino.

Delivering hope or false hope by hyping questionable “breakthroughs”?

The House Energy and Commerce Committee has been relentless and creative in its public relations campaign to support the 21^st Century Cures Act — the draft legislation that would allow device approvals on the basis of anecdotal experience rather than clinical trials.

As veteran reporter and HealthNewsReview.org contributor Trudy Lieberman has pointed out, the Committee has emptied the public relations bag of tricks in support of the bill, using blog posts, recycled op-eds, and stories of sick kids whom the Committee claims would benefit from the legislation. They haven’t said much about how the bill would represent a windfall for their supporters in the drug and device industries or potentially allow inadequately tested products on the market.

Now the Committee may be hoping to catch some reflected glory from the Ice Bucket Challenge “breakthrough” story that’s gone viral over the past week. An Energy and Commerce committee news release that’s headlined “#CURESNOW DISCOVERY ALERT” gives readers the broad outlines of a “major discovery” in ALS genetics that “represents a major step toward eradicating the disease once and for all.”

Apparently they didn’t hear that some experts are pouring cold water on the idea that this represents anything close to a “breakthrough.” And that this “major step toward eradicating the disease” might only apply to 3% of ALS patients.

The committee’s release is mainly a summary of a Medical News Today story, which is itself in large part a rehash of an ALS Association news release that hypes a study published in Nature Genetics.

At nearly every turn in this polluted news stream, the modest advance reported by the researchers has been blown far out of proportion to its significance to serve different agendas. And one can make an educated guess as to the forces that are driving the exaggeration.

• A disease-focused association presumably wants to tout the success of past efforts and stimulate the flow of new donations.
• A news outlet needs eyeball-attracting headlines and finds a ready source in promotional news releases that can be repurposed with minimal effort and cost.
• Now legislators are appropriating that same superficial news story to advance their objective of relaxing FDA safety regulations.

As we’ve asked many times before: Who’s looking out for patients, their families, and other consumers who ultimately drink the water from this polluted stream?

I searched in vain for any “news” related to the Cures Act that would warrant a public release by the government committee. The document seems to be nothing more than an attempt to capitalize on the positive feelings generated by the Ice Bucket “breakthrough” story and channel them to the legislation’s advantage.

Are the Committee’s efforts succeeding?

Trudy Lieberman, who’s been following the progress of the Cures Act closely, had this to say about the bill’s progress:

The Energy & Commerce Committee doesn’t miss a trick when it comes to keeping the idea of breakthroughs, even bogus ones, alive and well in the news media. But it appears that the Committee is struggling to get their bill approved in the Senate and on Obama’s desk by the end of the year. And these sensational stories about an ALS “breakthrough” have given the committee another chance to keep the notion of the Cures Act alive in a crowded news market.

She added that it’s strange to see a government committee, which should be acting as a watchdog to prevent misinformation from reaching the consumer, acting the role of carnival barker to promote a questionable story.

“It begs the question” she said, “Is this another example of the Energy & Commerce Committee trying to lend a hand to the pharmaceutical industry?”