Science by Press Release – Not Good News for Patients

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It May Look Like News

If you have ALS, or know someone who does, you were probably inundated with emails from well-meaning and loving friends earlier this week with the news of a “breakthrough” in ALS research. I first saw the news in the press release issued by Northwestern University, the institution that sponsored the research. The headlines of many of the stories that resulted from that press release read “Major ALS Breakthrough: Researchers discover common cause of all forms of ALS.” Don’t go running to the pharmacy for the new treatment for ALS. It’s not here yet. It’s not even close.

As a long time health activist, I am more than a little bit familiar with what I have come to call “science by press release.” A research institution finds something interesting, they widely distribute a press release putting the best possible spin on it, and the media outlets run with the story. Try a google search of the phrase “ALS breakthrough” and see how many hits you get.

What Does it Mean for Patients?

The first question to ask when you see a story about a medical breakthrough is “what does this mean for patients today?” In the case of this ALS story, nada. What has been found is

Ubiquilin2, the new focus

a protein called Ubiquilin 2 that occurs in spinal and brain system cells. It’s supposed to repair or dispose of other proteins as they become damaged. The researchers discovered a breakdown of this function in ALS patients.

This may prove to be good news, especially if it is confirmed by other research and drugs can be developed to address the damaged protein. But we’re a long way from that day, and many

There's still a very long way to go

things could happen that keep researchers from getting to it. For example, it may turn out that some other protein or proteins have to be controlled to make sure that Ubiquilin 2 functions properly. The unknown territory is vast.

Key Words to Look For

There are key words to watch for in the “science by press release” world. Among them are “breakthrough”, “advance”, and “may,” “might,” or “could lead to.” When you see these words in a story about a medical breakthrough, listen carefully for what’s being reported. Far more often than not, the story is about something that worked in the lab but hasn’t been tried yet in patients, or about a study of a very small number of patients.

Those of us living with illness, and the people who love and care about them, need hope. But we don’t need research masquerading as news that will affect our chances of surviving. As one scientist interviewed on the ALS story said, “You need to understand at the cellular level what is going wrong. Then you can begin to design drugs.” Call me when you get there.

Dreaming

When I was the Executive Director of Breast Cancer Action, I often wished that a PhD candidate would review all the news stories in the last decade about medical breakthroughs in breast cancer and figure out which ones in fact resulted in improving outcomes for patients. I would love to read that dissertation.

What You Can Do

Next time you see a medical “breakthrough” story, think about contacting the media outletand telling (or just asking) them what their story means topatients today, especially if it may be, might be, or probably is nothing.

© Barbara A. Brenner 2011

 

 

 

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9 Responses to Science by Press Release – Not Good News for Patients

  1. BobO says:

    It’s very hard on healthcare workers as well. Receiving phonecalls and emails from patients who have so much hope, and having to tell them that this is significant information, but as yet means nothing in treatment and won’t for years to come. Giving bad news is part of working in healthcare, but I never got used to it, and it never gets any easier.

    • Virginia M. Fowler says:

      I read that story with so much hope, however, I did understand what was being said by the end of the article. That, being said, I did call the research center at Northwestern University because i wanted to try and see if my brother-in-law would qualify for clinicle trials. The exact mass they were discussing in the article was exactly what was found with my brother-in-law when they were trying to determine what his illness was and unfortunately he was diagnosed with ALS at the latter part of March 2011 and is now at the stages of someone that has had it for 2 to 3 years. This dreadful desease has hit him so quick and so hard, the Dr.s gave him 2 to 4 years he will be lucky if me makes it to January (could be a blessing in disguise). So here is a question, if these people know they are going to pass soon, why not give them the option to take experimental drugs and see what the outcome would be. I know the FDA makes sure drugs pass certain guidlines, but is there a chance that certain drugs are being held back because of the money to be made on the drugs that only treat the symptoms not the desease. I and my sister are learning the reasorces for ALS patience are very minimal, it is sad. My brother-in-law was told at the beginning before diagnosed if the mass was removed he would definately be paralized somewhere but it’s not known where, well that has since happened. Can the mass be frozen, can the skin cell research that converts skin cells taken from an ALS patient into some type of stem cell research. The damage is done why not try and reverse it if the patient is willing. Thank you.

  2. Susan Liroff says:

    I knew we’d being hearing from you regarding all the hooplah in the news. Once again, you didn’t disappoint. Thank you for helping us read between the lines! xoxo and LOVE LOVE LOVE…. sl2

  3. ENV says:

    The idea of broken proteonomics is nothing new. It is long known that protein aggregation is a hallmark of many neurodegenerative diseases, but there is still the question of whether this is causative or just another symptom. The evidence that ALS is non-cell autonomous is pretty convincing. I blogged on this myself the day the news broke about this study.

    The one large positive I did take away from this is the notion that although there may be many individual causes, they all come together to a single druggable point.

  4. Chuck Hummer says:

    Barbara, you hit the nail squarely on the head. In the interest of clarification ALSA sent out Q&As to the chapters apparently with a “close hold” mandate. I have no idea what’s in their dispatch because it has not been sent this PALS who is expected to grovel for donations for the annual waks. It begs the question what more is being kept from us.

  5. Jenny says:

    Thanks for your perspective on this. The terminology in the headline “a common cause for ALS has been found” makes it sound so easy. To me, “common” makes it sound so simple…hit the easy button and ch-ching, ch-ching a treatment is on the shelves. If you know ALS you know nothing about it is easy, or simple, or common. I’m hopeful that a treatment will be found as more clues discovered, and one day, soon, please let it be soon, my husband will be done with stinking disease.

  6. CSFan says:

    Couldn’t agree more. Such “news” is better circulated within academic circles rather than unleashed on the public. When you read a headline like this, but then read the actual article, the letdown is quite severe. I recall way back in 1998 when the “news” was declaring that the scientific community was on the brink of a cancer cure. My mom, then only 2 years out of the woods from her breast cancer diagnosis, was in tears. Well, fast forward 13 years and what do we have – no cure. So yes, media soundbites extolling new “breakthroughs” that really don’t amount to anything more than cotton candy for the public are best left out of the news cycle. This teasing is kind of cruel actually…..

  7. Thank you Barbara. I learned a long time ago from a lawyer friend, Mike Veiluva (also a former Boalt alum), to always pay attention to the words “may” or “might.” They are small but powerful words that are easily overlooked but almost always hold the key. Thanks for reminding us of that.

  8. Nancy Goldstein says:

    It’s so aggravating! Of course, the media outlet is not interested in what the story means to patients in any substantive way. It’s interested in what kind of viewership it can generate with a headline that will attract thousands and thousands of people. Especially when it’s “good news” they can feel good about sharing.
    I experienced the same kind of frustration when my brother was suffering from early Alzheimer’s. It seemed as if there was an article every day about a breakthrough or even a new drug that could reverse the course of the disease. I was even more frustrated when I couldn’t get any kind of response from the local doctors quoted in the articles. Thank you, as always, for pointing out the truths in all of this!

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