A Rare Disease, But a Common Prescription

It sounds like the plot of one of those Oscar season “prestige” movies…

Crusading journalists discover sales of a drug for a rare condition have skyrocketed in the last few years. About half those sales – 14 million pills in 2016 – went to long-term care facilities. Sales to these facilities are up 400% in 4 years.

Meanwhile, the pill’s maker has been plowing money into non-profits that deal with dementia and Alzheimer’s disease. A move medical ethicists say is common, but clearly unethical in this case.

And here’s the clincher: The pills are mostly given to elderly patients who don’t have the rare condition it’s designed to treat. And that’s the only approved use for this drug.

But, as you guessed, this isn’t the plot of some Hollywood Oscar bait. It’s real life. And the crusading journalists are from – wait for it – CNN.

That’s right. The news source many folks laugh off as “the airport news network,” has done you a big favor if someone you love is in long-term care.

Here’s what you need to know…

A Rare Disease, but a Common Prescription

Earlier this year, I wrote to you about “off-label” prescribing. That’s when a doctor orders a drug for a condition it hasn’t been approved for.

Off-label use is legal… but open to question. Many off-label uses for drugs are backed by skimpy – if any – evidence.

The drug in this story is Neudexta. The rare condition it treats is PBA – pseudobulbar affect. Less than 1% of Americans have this disorder. It’s mostly found in people with ALS (Lou Gehrig’s disease) or multiple sclerosis.

People with PBA experience episodes of uncontrollable laughter or crying. These outbursts are a nerve system disorder, and not caused by ordinary emotional triggers.

Neudexta is the only drug approved for PBA, and by all reports, it helps.

Here’s where the problem arises. The drug’s maker would like to see it prescribed for other neurological conditions… such as agitation in Alzheimer’s and dementia patients. Which is why giving money to non-profits devoted to curing these diseases creates a conflict of interest.

So much so, the CNN exposé has led to an investigation by the Los Angeles City Attorney’s office.

Then there’s the bigger question…

Why the Explosion of Off-Label Use?

The drug’s maker, Avanir, claims it doesn’t promote off-label use. Which is illegal. Yet 400% growth in four years for an off-label use is, let’s say, unusual.

According to CNN’s medical sources, PBA is uncommon among dementia patients. Regulators also report some doctors have falsely diagnosed PBA in order to prescribe Neudexta. Apparently in hopes of making patients easier to manage.

But that’s open to question. Creighton University reports on one trial using Neudexta with agitated Alzheimer’s patients. The Neudexta group fared better than those taking a placebo. But the difference was so small it’s unclear it rises to statistical significance.

The study also left open questions about safety. The researchers found some evidence it may increase the risk of falls in the elderly.

Then there’s the cost. The New York Times reports a month’s supply of Neudexta costs over $700.00. In spite of it just being a combination of two fairly inexpensive drugs. The Times found buying those two drugs separately would cost about $20.00 a month.

The more you learn, the more this sounds like a classic case of greed gone wild.

If one of your loved ones is in long-term care, find out what drugs they’re on. If they’re taking Neudexta, their doctor should have some explaining to do.

About the Author: Jason Kennedy is a celebrated investigative health writer and the author of The X-Factor Revolution and Beyond the Blue Zone. With over 10 years of experience working with today’s leading alternative and anti-aging doctors, Jason shares his insider status and access to the latest breakthroughs with thousands of readers from around world.


Jason Kennedy

Ellis, B. and Hicken, M., “Drugmaker’s ties to nonprofits pose ‘conflict of interest’,” CNN Investigates. Nov 3, 2017.

Ellis, B. and Hicken, M., “The little red pill being pushed on the elderly,” CNN Investigates. Oct 12, 2017.

Hein, D., “Off-Label Uses of Neudexta® (Dextromethorphan/Quinidine),” Long-Term Care Updates, Creighton University. Mar 2017.

Applby, J., “How a Drug to Treat Crying Sent Sales Soaring,” The New York Times. May 12, 2017.


© Copyright 2017 Discovery Health Publishing, Inc. All Rights Reserved.

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