Health News Review

The newspaper dropped “Miracle Medicine” from the headline after we blogged about it

I know what it’s like for patients to tune in when they hear news stories about a condition they have.

I have a form of spinal arthritis known as ankylosing spondylitis (AS).  So when The Globe and Mail newspaper published a story referring to “a miracle medicine” for AS, I perked up. Hmmm, I thought.  I’m pretty plugged into health care news and I’m pretty plugged into my own situation.  So what’s up?

What was up was some unbalanced hype.

The story profiles one man who went from “bedridden to Ironman” after the use of the injectible drug Enbrel (etanercept).

“The effect was miraculous,” the story beamed.  After severe pain, job disability and depression, the man was was downhill skiing and running a five-kilometer race.

The story did cite some evidence:

“According to (a) study, published recently in the medical journal Arthritis and Rheumatism, patients on TNF-inhibitors were 70-per-cent less likely to deteriorate than those taking other medications. Those who waited 10 years or more to begin such treatment were far less likely to respond.

“Before this paper,” says (the lead researcher), “either you went undiagnosed for years, or the GP did not take it seriously, because there was no treatment except over-the-counter anti-inflammatories. Now, we know that treatment with biologics makes a difference.”

But it’s what the story didn’t tell us that you may find most intriguing, possibly even most important.

One reader left this comment online: “Story leaves out the small detail that Enbrel costs $20,000 a year and most provincial drug plans don’t cover the cost.”

That’s pretty important.

How about potential harms of the drug? Nothing in the story on those, either. The known side effects can be ugly, including:

  • Risk of infections, some serious, including tuberculosis (TB), and infections caused by viruses, fungi or bacteria that spread throughout their body. Some people have died from these infections.
  • Risk of cancer.
  • Hepatitis B infection in people who carry the virus in their blood. If you are a carrier of the hepatitis B virus (a virus that affects the liver), the virus can become active while you use ENBREL.
  • Nervous system problems. Rarely, people who use TNF blocker medicines have developed nervous system problems such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes.
  • Blood problems. Low blood counts have been seen with other TNF blocker medicines. Your body may not make enough of the blood cells that help fight infections or help stop bleeding. Symptoms include fever, bruising or bleeding very easily, or looking pale.
  • Heart failure including new heart failure or worsening of heart failure you already have. New or worse heart failure can happen in people who use TNF blocker medicines, like ENBREL.
  • Psoriasis. Some people using ENBREL developed new psoriasis or worsening of psoriasis they already had.
  • Allergic reactions. Allergic reactions can happen to people who use TNF blocker medicines.
  • Autoimmune reactions, including:
    • Lupus-like syndrome. Symptoms include a rash on your face and arms that gets worse in the sun.
    • Autoimmune hepatitis. Liver problems can happen in people who use TNF blocker medicines, including ENBREL. These problems can lead to liver failure and death.

The story didn’t independently evaluate the quality of the evidence.  It didn’t mention that this was not a randomized clinical trial, and that the researchers admit the limitations of “potential unmeasured confounders and potential biases.”

The story didn’t quote anyone without a conflict of interest – only those touting their own work. And the story didn’t mention that – in the same issue of the journal where the cited study appeared – there was an editorial that said “The controversy continues.”

Controversy?  What controversy? The headline said this was a “miracle”!

Indeed, in the published journal paper, the researchers only concluded, “Treatment with TNFα inhibitors (like Enbrel) appears to reduce radiographic progression in AS patients, especially with early initiation and with longer duration of followup.”

The editorial stated that:

  • “the results of this study should be interpreted with caution.”
  • the researchers “used a new definition of radiographic progression” and said “It is a questionable definition.”
  • “the methodologic robustness of radiographic assessment in the study by Haroon and colleagues is not ideal.”
  • “does the study …provide conclusive evidence that anti-TNF agents have a protective effect on radiographic progression in AS? No, not yet.”

So the editorialist didn’t see a miracle.  Didn’t see conclusive evidence.  Didn’t see an ideal methodology.  But saw a definition of evidence – the whole basis of the study – as questionable.

But, you see, that’s what you get when you seek independent perspectives, as the journal did in seeking an editorial comment.

The newspaper didn’t do that.  It didn’t evaluate the quality of evidence.  It’s not clear that the reporter read the journal article.  And it seems he missed the editorial as well.

So, even though my ankylosing spondylitis is still there, I’m going to pay more attention to the cautions than to the miracle proclamations. Newer is not always better.

P.S. The way things are in online news these days, it should not be surprising that Amgen, maker of Enbrel, was able to place an ad – a big one – bigger than what I’m displaying here – right next to the ad-like news story for the drug.  Caveat emptor.

Addendum on November 22:  The public editor of The Globe and Mail agrees with our criticism in her online assessment, “Careful what you call a ‘miracle.’

 

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Comments

Linda posted on November 20, 2013 at 9:02 pm

Your post resonated very strongly with me. Such writing that passes as journalism is much too frequent and serves to misinform and confuse people made vulnerable by disease and ill health. Are there no standards at the Globe and Mail?

Alan Lenowitz posted on November 20, 2013 at 11:16 pm

You are wise to be cautious with this class of drugs for AS. I find that NSAIDS work just fine in my case….without all the risks of the TNF blockers. Most rheumatologists have been marketed heavily by the drug manufacturers.

Alan Cassels posted on November 21, 2013 at 11:57 am

Totally agree with your analysis Gary. I almost choked on my morning coffee reading that article–It reminded me of an article about a decade ago in a major Canadian newspaper which featured a woman who could barely move due to her arthritis, but was now up and running five kilometres a day thanks to her Celebrex. I too thought the Globe had some minimum standards and that over the last decade we had helped train a new generation of health reporters who would never allow themselves to channel the promotional energies of pharmaceutical companies in such a shameless way. But I guess I was wrong.

Corsstep posted on November 21, 2013 at 12:31 pm

I have lived with back pain for over 10 years whilst seeing Doctors, Specialist, and Physical Therapists without resolution or explanation for my pain. The pain was so bad that my wife would have to assist me to get out of bed most mornings. I went to a massage specialist who never saw anyone like be before, every touch I would scream in pain. He had a personal trainer/physical therapist to examine me; within 5 minutes he advised that I have Ankylosing Spondylitis. I immediately went to see Rheumatologist’s for confirmation; which was confirmed. I finally had an answer to the pain I endured all these years. I have been on Enbrel for 2 years now to help control the disease. Enbrel gave me my life back, I can now do almost all the activities when I was younger, workout, jog, surf, paddleboard, play with my son, have enough energy to work full time. I understand people have different experiences with different medications and the risks involved, but for me this gave me and my family my life back. I am in my 40’s and feel like I did when I was 20 now instead of an 80 year old man. Luckily my insurance helps pay for the cost as well as Enbrel support. I read your criticism of big pharmaceutical companies and Enbrel, but what is your alternative solution to these medicines that are helping people with AS or other inflammatory diseases to get their lives back? It is very easy to criticize and pick things apart in a negative manner, what we are missing are suggestions and resolutions to ride these diseases. I like seeing positive news about someone with AS it helps spread awareness and hope that one day there will be a cure.

    Gary Schwitzer posted on November 21, 2013 at 2:42 pm

    You said I criticized Pharma and Enbrel.

    I did not.

    I criticized the imbalanced, incomplete news story.

    P.S. The newspaper just dropped “miracle medicine” from the headline, so they must have agreed with the criticism.

Mark Schoene, Editor, The BackLetter posted on November 26, 2013 at 12:26 pm

Enbrel and other TNF-alpha inhibitors can be disease altering for AS—but certainly have the array of side-effects Gary details. So think they are excellent candidates for shared decision-making with good decision aids. But the Globe and Mail article would certainly not qualify as the latter!

TNF-alpha inhibitors are being heavily promoted in the mass media in the US—including series of provocative ads trolling for people with unexplained back pain on sports talk radio in Boston. With this kind of aggressive marketing push, “caveat emptor” should certainly be the order of the day for people with common back symptoms.

Andrew Turner posted on December 3, 2013 at 9:24 pm

You are missing the point of the article. The point of the article is if you have back pain and/or joint pain go find a good rheumatologist and get the xrays and the gene marker blood test and see if you might have AS. The point of the article was to raise awareness about AS. People go on years with back pain and never get properly diagnosed. I’ve had a dozen people that I have known indirectly contact me to find out about the disease because they have similar symptoms. The earlier the diagnosis the better the potential outcome, with NSAIDS and if they don’t work with TNF blockers. This article wasn’t an Enbrel promote piece. It was an article to educate and maybe help some people with back/joint pain. If you expected the article to list off the potential side effects of the drug, there wouldn’t be much space left for a story. Most readers are aware all drugs have side effects, and most doctors will tell you the chances of side effects are very rare for Enbrel. For somebody who has AS himself I’m surprised you can’t appreciate the optimistic tone of the article. Instead what your response does is while correctly highlighting a one sided tone to the article, you cast negativity over an uplifting story that might give people who are in constant pain some hope. I have been on Enbrel for 4 years and have had minimal side effects. I would have stuck anything in my leg to get rid of the pain. So for me Enrel is a miracle drug. It won’t work for everybody but that’s why we need to raise awareness for the disease so we can get better and cheaper treatment options down the road.

    Gary Schwitzer posted on December 3, 2013 at 9:43 pm

    Andrew,

    I missed the point of the article?

    Then I guess so did the newspaper’s own public editor, who agreed with my critique.

    And so did whichever editor/manager who decided to remove the original “miracle” headline after our critique.