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Oh sh–! Almost forgot it’s C. diff Awareness Month!

Michael Joyce is a writer-producer with HealthNewsReview.org and tweets as @mlmjoyce

Various advocacy interests have proclaimed November as the national (or global) awareness month for stomach cancer, osteoporosis, pancreatic cancer, prematurity, lung cancer, bladder health, Alzheimer’s disease, home health, family caregivers, and hospice/palliative care.

3D Animation of C-diff

And for the past four years, you’ve also been asked in November to heighten your awareness of Clostridium difficile — or “C. diff” for short. The campaign is spearheaded by the C Diff Foundation.

C. diff is an opportunistic bacterium that most commonly infects older adults who’ve been hospitalized, institutionalized, or had prolonged exposure to antibiotics. Community-acquired cases are also starting to emerge. The CDC estimates it infects just under half a million Americans each year, and can result in a full range of symptoms from moderate diarrhea to life-threatening inflammation of the colon.

But it’s not the science or statistics of the infection that’s caught my attention, even though my 86-year-old mother just got over a classic case of it, after three hospitalizations and several courses of antibiotics for another infection. Rather, I keep wondering whether and why we really need a “C. diff Awareness Month.”

Would increasing my mother’s “awareness” have helped her avoid the infection? Since she can’t do much about her age or being hospitalized, the only potentially preventative measures she could’ve taken are the same common sense steps any of us should take when it comes to infection: basic, good hygiene and the judicious use of antibiotics under medical supervision.

Yes, this can be a serious disease, and the injudicious use of antibiotics and emerging virulent strains most likely play key roles. But equally important is pausing to consider this: How much can making you, me and our neighbors more “aware” really help? Or, who really benefits from the “awareness”?

It was the Mayo Clinic News Network — part of their PR effort — that caught my eye with the offer of Mayo experts who could be interviewed on C. diff. Does the PR reminder that “Mayo Clinic has C. difficile clinics at its Rochester, Minnesota, Scottsdale, Arizona and Jacksonville, Florida campuses” qualify as awareness — or marketing?

Money, state proclamations, and Clorox-sponsored radio

This past weekend’s 6th Annual International C. diff. Conference and Health Expo may provide another clue. Roughly half of the featured speakers — both MD’s and PhD’s — have financial ties to biomedical companies that sell C. diff treatments or disinfection products. At least a dozen of these companies were major sponsors of the meeting.

The C Diff Foundation’s website, its Facebook page, and their radio program all prominently feature fundraising and industry-sponsored studies despite this disclaimer regarding their Code of Ethics which:

“… prohibits the endorsement and paid promotion of products, services, medications, or clinical studies in progress.”

How do the fundraising, petitions for state proclamations of “C. diff Awareness Month,” and the Clorox-sponsored radio program help consumers? Let’s say they achieve widespread “awareness” — whatever that is. Now what?

“What bothers me about C. diff Awareness Month is what bothers me about all such campaigns,” says Andrew Holtz, an Oregon-based health care journalist, and past president of the Association of Health Care Journalists. “It’s easy to see how they benefit fundraisers and companies selling treatments, but not so clear how ‘being more aware’ helps the average person.

“In the case of C. diff there isn’t much public awareness, but there isn’t a compelling need for more. In the case of diseases like breast cancer, there’s almost universal awareness, so there’s little benefit to the public of an awareness campaign. These campaigns too often bear little relationship to the public health burden of the featured disease, or the usefulness of broader public education about it.”

‘A market of alarmed consumers’

Here’s what we really need awareness of: a commercialized medical juggernaut fueled by financial incentives that has lowered the thresholds for what isn’t normal and what does need treatment, while shifting the focus from the sick to the worried well.

One of the more erudite and provocative distillations of this was composed by Harvard psychiatrist Arthur J. Barsky, MD, in this 1988 New England Journal of Medicine essay, The Paradox of Health:

“Each producer tries to convince the public that something is dangerously wrong, or about to go wrong, and that immediate steps must be taken to remedy the situation. An indifferent public is first galvanized into becoming a market of alarmed consumers by constant reminders of myriad threats to health, and then convinced of the need for more and more products and services to protect them. In the process, deep-seated fears about disease are mobilized, and insecurities about health and longevity are intensified. As a result, many come to feel less secure about their health, more worried about the possibility of disease, more absorbed in trivial symptoms … amplifying the public’s sense of somatic vulnerability and apprehension of illness.”

This is another sort of “awareness” — a dysfunctional variety, not the health-promoting kind — that can emerge from campaigns where there isn’t really a need for awareness. It runs deeper than financial interests because it shifts our awareness away from actionable health choices and toward an unnecessarily medicalized life.

To be aware is to be “wary, vigilant, and cautious.” Next time you come across a health-related awareness campaign, ask your self what you really need to be wary, vigilant, and cautious about.

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Comments (7)

Please note, comments are no longer published through this website. All previously made comments are still archived and available for viewing through select posts.

Scott Battles

November 13, 2018 at 6:26 am

As the Vice-President of the foundation I will simply say that you know nothing of this organization. You throw mud a a very well respected organization that only has a goal of mitigating this horrific disease. If you had attended our recent conference you would likely have a much different view… Scott Battles

Michael Joyce

November 13, 2018 at 9:03 am

Mr. Battles,

Thank you for reading, commenting, and for your work with the C Diff Foundation.

I don’t see how the article attacks your foundation or minimizes the impact of C. diff; which, as you rightly point out, can be a horrific disease.

The question addressed is who really benefits from the heightened “awareness”? Does it offer more to consumers in the form of actionable steps they can take to protect themselves and decrease the disease prevalence? Or, judging from the industrial investment in this past weekend’s conference, might it be of more benefit to those with significant financial interests at stake?

It’s an important question and why I wrote the article.

C. diff awareness is not like a seatbelt campaign. The latter empowers people in such a way that can directly impact morbidity, mortality, and quality of life. Decreasing the prevalence of C. diff has much more to do with appropriate antibiotic use and health facility hygiene protocols. Yes, personal hygiene does play a role we all need to be aware of, but what more can a month of “awareness” do for consumers or patients like my mother?

Kathleen Bischoff

November 13, 2018 at 4:37 pm

Mr. Joyce,

I am an eight time C.diff survivor and I would like to address several of your questions and give you my perspective as a survivor:

“The question addressed is who really benefits from the heightened “awareness”?”

We ALL do! 80% of those that contract a C.diff infection have never heard of it. Heightened awareness through educating and advocating anyone and everyone absolutely will offer opportunities in taking steps to not only protect themselves and their loved ones (SUCH AS YOUR Mother) but it will also decrease the infections rapid growing epidemic.

I had NO IDEA that there was an infection called C.diff, how it was contracted or how debilitating, horrific and life threatening it was. I had no idea it was contagious or that it could be passed on to not only your loved ones but the general population or how that could happen.

” Does it offer more to consumers in the form of actionable steps they can take to protect themselves and decrease the disease prevalence? “

Absolutely! Knowledge is power and one needs to be aware to gain knowledge. I find it hard to believe you would even ask unless you have not done any in depth research.

Let’s keep it simple. AWARENESS of ANY situation, medical, or otherwise protects us all from the prevalence of unwarranted and unwanted consequences. Had I been AWARE of the causes of C.diff I may have prevented the first infection. Most lay persons go to the Dr. get a prescription for “whatever ails you” and take it without question. Or some demand an antibiotic because they are not AWARE. Aware of antibiotics and the careful choices we all should be making and the types of them we allow to be administered and in what quantities. Precautions that we should all be taking as a patient or the advocate of a loved one hospitalized to reduce chances of becoming infected. By increasing awareness you most certainly decrease infection/disease prevalence. Few of us advocate on our or a loved ones behalf in the medical world. It is frightening and intimidating and we “trust” often without question.

“C. diff awareness is not like a seatbelt campaign. The latter empowers people in such a way that can directly impact morbidity, mortality, and quality of life.”

I totally disagree. It is EXACTLY like a seatbelt campaign. C.diff awareness most certainly “empowers people in such a way that can directly impact morbidity, mortality, and quality of life.” I have been on that journey and I know. My specialists could not prevent my reoccurrences with any drug therapy on the market currently approved by the FDA. Were it not for the research being done by pharmaceutical companies, you seem to take exception to as well, I would not be here to say “Michael Joyce, Shame on you!” A clinical trial saved my life and finally cured my infection after going through two and a half years of hell.

Proclamations promote awareness and I applaud and am grateful to every state that recognizes the importance of bringing advocacy, education and awareness to its citizenry about these debilitating, horrific and sometime fatal infections .

The C diff Foundation was my lifeline to understanding and getting the much needed information that saved my life. It unfortunately did not come until I advocated for myself and found their Website. Their Website is a wealth of knowledge. It was there,I discovered that there were clinical trials for C.diff.

In closing, I am so grateful that your Mother survived this infection. “but what more can a month of “awareness” do for consumers or patients like my mother?”

Mr. Joyce, a month of awareness will, I pray, help to educate you and consumers of prevention, environmental safety, avenues of education and yes, awareness of Clostridium difficile infections. I wish your Mother continued good health and I pray you will be her advocate should she ever be faced with a situation that could cause this infection again.

Kathleen Bischoff
C.diff Survivor

Michael Joyce

November 14, 2018 at 9:56 am

Ms. Bischoff,
Thank you for sharing your experiences with us, and glad to hear you’ve recovered.

You seem to argue that I am minimizing the very real impact of this disease … as well as disparaging the C Diff Foundation, much needed research in this area, and the value of consumers becoming better educated about C. Diff..

Nothing could be further from the truth. Evidence-based advocacy and education resonate strongly with our core mission of improving the public dialogue on important health issues like C.diff infection.

My intent is not to make definitive statements regarding the science related to this infection. Rather it’s to bring attention to an issue rarely covered by reporters; that is, awareness campaigns need to be scrutinized like all other health care messages. We are becoming inundated with them. They vary significantly in quality and usefulness, and many run the legitimate risk of (per Dr. Barsky’s quote) “amplifying the public’s sense of somatic vulnerability and apprehension of illness.”

The number of people affected by C.diff pales in comparison to the number of people who’ll be reached by this campaign. And you’d be justified in saying that if it gets more people to follow better hygiene at home (and hospitals, nursing homes, etc) and also be more invested in shared decision-making with their doctors when it comes to antibiotics, then that’s an important impact.

But I’d argue you’d be unjustified in arguing that such campaigns don’t lead to a potentially harmful fallout such as whipping the worried well into an unnecessary frenzy, and providing those with undeniable financial interests with another kind of “awareness” that suits them just fine.

Robert Jaffe

November 18, 2018 at 2:17 pm

I am right this moment still recovering from my first C. Diff infection, still taking metronidazole to try to ward off a recurrence which hasn’t happened yet. Unlike Ms. Bischoff I HAD heard previously of C. Diff infections but they (and a large number of diseases, conditions and health concerns) were not on my medical radar as not personally relevant. As should everyone, I triage all incoming medical news and knowledge to separate the personally relevant from the (perhaps) interesting but not personally relevant. Like most people I don’t have time for irrelevancies. And the day my internist diagnosed my C. Diff infection (about two days after I’d first described my symptoms) I had plenty of time to research C. Diff on the internet and gather relevant facts and suggestions. By the time in the following week that my infection had been laboratory-confirmed, I had enough information about C. Diff to guide me through both dealing with the current problem and satisfying my desire to know what I could do (if anything) to prevent future C. Diff infections. No “awareness campaign” could have made the slightest difference. At the same time, in all fairness I have to add that my own personal (and family) sanitation and hygiene IN GENERAL could have been better, *perhaps* warding off a number of potential problems including C. Diff. And I have to assume that as an average consumer there are others out there who also would *perhaps* benefit from the kind of hygiene advice I now find is offered as relevant to C. Diff. That COULD be a benefit from awareness campaigns. Further, I do think that individuals have to be responsible for their own information overload, have to be capable of filtering out the unnecessary from the necessary, have to be willing to do the (rather simple) personal risk/benefit analyses when reading headlines about particular health-related issues. Are all medical consumers really deer-in-the-headlights? Frankly, I believe that some people are more anxiety-prone than others and that many people actually work (consciously or unconsciously) at finding things to be anxious about. So whether it’s a disease/condition awareness campaign or the air quality in their neighborhood or their relevant state water-quality standards they will find sufficient anxiety fuel to maintain the anxiety level they feel is appropriate for them. So in this wonderful first-amendment- respecting country of ours I’m willing to put up with the normal, daily PR and advertising avalanche and simply pay no attention to the personally irrelevant until it becomes relevant. It’s one of the costs of being American. I don’t think it’s realistic to try and make it go away. Think how many productive citizens would lose their jobs!

Joseph Arpaia

November 19, 2018 at 10:38 am

The comments are interesting and illustrate a principle that is at the root of much social dysfunction. The principle is that people will cling to what reduces unease even if it does not reduce difficulty. The author made the excellent point that increasing awareness of C. Diff in the general public will not reduce C. Diff. in the patient population, not because awareness is useless but because the “awareness program” is presented to people who are not at risk.

Mr. Battles ignores the valid points of the article and engages in ad hominem attacks on the author. Given that he is the president of the organization that was critiqued in the article I infer that he is an example of Upton Sinclair’s maxim that it is difficult to get a person to perceive something when his salary (or position) depends on his not perceiving it.

Ms. Bischoff makes a couple of mistakes in her comment. One is when she equates this program to a seatbelt awareness program. That is a false comparison because seatbelts make car travel safer and almost everyone uses cars. Very few of the people targeted by the C. Diff program will benefit from it. But she is uneasy about C. Diff so she misses the fallacy of her comparison. Her comparison would have more correct if she compared the C. Diff awareness program to a seatbelt campaign targeted to Amish individuals (who do not use automobiles).

Ms. Bischoff also seems to ignore the fact that people have limits on their attention. If they are supposed to be aware of everything that could negatively affect their health then they will be overwhelmed. She confuses the process of making people aware with the process of distracting them. Some of the sickest patients I see are those who are so focused on being aware of everything that might harm them that they can’t focus on what they need to. Furthermore their sympathetic nervous system is in constant overdrive. That sympathetic overdrive is causing them more damage than what they are “protecting” themselves from. However, they have become so terrified by all the scare-mongering of the “health-care” system they can’t stop themselves and need professional help and sometimes medication.

Kudos to Mr. Jaffe for his comment. He demonstrated the ability to recognize his anxiety about C. Diff and not allow that to overwhelm his logical faculties. He described a balanced response acknowledging the danger with reasonable steps to mitigate the risk. I do want to point out that while I agree with his statement that consumers must have some responsibility for the health-care information they focus upon, it is hard to for consumers to achieve balance in the current information environment. Very few “public-service” announcements state factual and reassuring messages such as “Your body has an enormous number of protective, and self-healing mechanisms that enable it to maintain health and well-being. Please spend some time today focusing on [ description of self-healing mechanism here ]. “

Joseph Arpaia

November 19, 2018 at 10:40 am

Erratum:
In my previous comment I mistyped Mr. Battles position as president of the organization. He is the vice-president.