A North Carolina man living with type 2 diabetes has filed a federal lawsuit against a state dietetics board that he claims censored his blog, the Diabetes Warrior. The board claims that since he isn’t a licensed dietician, he shouldn’t be allowed to offer online advice to fellow people with diabetes about what they should and shouldn’t eat.
Diabetes blogger Steve Cooksey’s story sounds familiar: the 51-year-old was diagnosed with type 2 in 2009 after being hospitalized for high blood sugar.
At the time, he weighed more than 240 pounds, didn’t exercise and ate poorly. Doing some reading about diabetes, Steve apparently quickly discovered he might not have to be on insulin for the rest of his life like his doctor told him, but rather he could adopt a low carb/high-fat diet — in some circles crystallized as the “Paleo Diet” or “caveman diet” — to manage his diabetes. That worked, and he began blogging about his success in 2010 while apparently weaning himself off insulin and medications.
Actually, that’s not the whole tale. He wasn’t just blogging, and sharing his story online as so many of us in the Diabetes Online Community do. Aside from setting up a free Dear Abby-style column on his blog to answer questions, he also started charging a “modest fee” for what he described as “diabetes support” or “lifestyle coaching.”
So in addition to sharing opinions and offering emotional support related to healthy eating and living, he was also tweaking people’s diets and creating personalized nutrition plans for their intake of calories, fats and carbs.
You, know… basically what licensed dieticians and nutritionists do after completing years of training.
One day, Steve decided to challenge what a local hospital diabetes services director was saying at a nutritional seminar for PWDs hosted at a local church. He apparently called this woman out, disagreeing with her claim that PWDs should eat a diet rich in whole-grain carbs and low in fat. Soon after, his work miraculously caught the eye of the North Carolina Board of Dietetics/Nutrition (NCBDN), and he got word that his web site and activity were under investigation following a complaint lodged about his “practicing dietetics without a license.”
Without proper credentials, the officials claim, he shouldn’t be developing, implementing and managing nutritional care systems and providing specific counseling. Not only was his paid life-coaching service to be shut down, but any exchange of private emails or telephone calls with his blog readers or friends was illegal, too. The board even reviewed Steve’s site and took issue with some of the exchanges he was having with PWDs online:
• “Honestly, he needs to get off the ‘carb up and shoot up’ treatment plan”;
• “Your friend must first and foremost obtain and maintain normal blood sugars”;
• “maintaining NORMAL blood sugars will allow his body to heal”;
• “Cut the carbs to 30g or less of TOTAL carbs per day and eating meats and veggies will
help them.”
• “I do suggest that your friend eat as I do and exercise as best they can.”
That’s why this case has important implications for the entire Diabetes Online Community and beyond. Is anyone blogging about diabetes, diet, and healthy lifestyle issues at risk of censorship? Where do we draw the line between simply sharing our stories to possibly help others live better with their own diabetes or other health conditions, and actively “informing” or “advising”?
Steve took some of the content down — on his own volition — and stopped his paid counseling service, but he isn’t leaving it at that.
On May 30, he filed a federal lawsuit against the state board, alleging First Amendment free speech violations. He’s being represented by the Institute for Justice based in Arlington, VA, which describes itself as “the nation’s premier libertarian public interest law firm.” They’ve even made a video about his case (brace yourself before watching, if you have any thoughts on “obese, junk-food-scarfing couch potatoes” developing type 2 and then “reversing ” their diagnosis simply by losing weight …!)
Steve’s been dubbed “the Caveman Blogger” in reference to how he ate and exercised like a caveman straight out of the Stone Ages in order to stay healthy. His case has gotten A LOT of press. In response, the NCBDN posted a statement titled “Setting the Record Straight.” Ironically, their wording is anything but straightforward. The only thing clear is that the board dropped its charges against Steve.
Nevertheless, as someone who’s read hundreds of legal briefs and court decisions in my previous life as a legal reporter (but not a lawyer himself), I’m a little worried about the legalese of all this and how it could impact what we do in the DOC. Our current laws are really outdated and haven’t kept pace with the Internet Age, and that’s my biggest worry…
The Institute representing Steve in his lawsuit says this case is about “(whether) the government can throw you in jail for offering advice on the Internet about what food people should buy at the grocery store?”
Or more broadly and far-reaching: “When does the government’s power to license occupations trump free speech?”
Apparently, the Institute says the First Amendment doesn’t allow the government to ban people from sharing “ordinary advice” about diet, or scrub the Internet—from blogs to Facebook to Twitter—of speech the government does not like.
The 31-page lawsuit points to libraries and bookstores where shelves are filled with self-help books on diet, aimed at communicating specific information to readers. The same can be said for television shows and Internet discussion forums, all of which are totally unregulated.
Anyone can check out those materials and find details instructions on issues that impact their health, and the lawsuit claims that under the defendant’s logic, someone could buy a book and adopt all the lessons but the same person isn’t able to contact the author or host by email or phone and ask about applying those lessons to their own lives.
“That is an arbitrary, and hence fatally underinclusive, distinction,” the suit says.
Personally, I’m a little worried that this could be a test case setting a legal standard about what health bloggers can do.
What does this mean for those of us who blog regularly about diabetes, for example, telling our own stories and letting people know what works or doesn’t work for us? Or to a weekly Q&A column like our own Ask D’Mine?
On one hand, Steve seems to have a point. And why have the NC officials gone after him specifically, when there are so many other so-called “health coaches” out there (it’s easy to purchase a certification for that online) who haven’t been told to stop what they’re doing?
If they’re all providing nutritional advice, what’s they key difference between a health coach and a licensed dietician or nutritionist?
According to at least one of Steve’s compatriots, “A health coach is someone who teaches you how to have great relationships. This includes relationships with other people, with yourself, with food, with work, with fitness, etc.” OK…
I’m not one to support anything resembling censorship. But at the same time, I’m very wary of snake oil salesmen or those who simply believe their way is the only way, across the board. I’m a big believer in the Your Diabetes May Vary mantra, and not the “this worked for me so you must embrace it, too” stance — something seems to be happening here with Mr. Diabetes Warrior.
Just one example from his site that bothers me: “For Type 2 Diabetics, controlling diabetes with diet is possible. EVERY person that follows this meal plan reduces drugs and insulin. Every single person… many wean off drugs and insulin completely.”
Disclaimers about not being a doc or dietician aside, it still reads like someone spouting medical beliefs as fact that may or may not be supported by those licensed to know. I repeat: YDMV. What works for one person may not work for another.
This crosses a line, in my opinion.
But whether we agree or don’t agree with Steve here in what he preaches, the grander scale of this First Amendment question is something every patient-blogger should be taking notice of. And that’s not legal advice – it’s simply an observation based on my own worries about how far this could go. Take that as you will.
I believe he should be able to post what he wants.
However, I do get a little tired of sanctimonious type 2 diabetics who claim by following “their” diet, they can get off meds. Look even type 2 diabetics who have gastric bypass generally don’t get off all their meds, despite the media hype.
Good for Steve for being an advocate to diabetics everywhere. I speak with diabetics who claim constantly that they are eating all the right food but their A1c is 12!! I know then they are in denial. Lowering your A1c just doesn’t happen overnight. Try following the diet you are supposed to be eating, comrades and you will have better results. My A1c varies between 5.8-6.1 and I am ptoud of it!
And my A1c is 6.5 after only three months after diagnosis (with an A1c of 11.3), and guess what? I eat carbs. Everyday.
That is why the post says, YDMV.
I’ve had many well-meaning people on the internet tell me that I could cure my Type 1 diabetes with diet. The one thing that gets them every time is “where’s the study proving it works for everyone?” They get sheepish and have to admit it doesn’t work for everyone (i.e.: Type 1s. They really don’t understand the difference). My worry is that someone will totally believe it without doing the critical thinking and research to find out what the dangers are to their health. As of yet, there is no miracle cure. Eating well and exercising are still ANY diabetic’s best plan…but some people think there’s a shortcut that only works for people who believe that it will.
I think he should be able to blog about what he has done to help his T2, but I think he crossed the line when he started charging for his services. If you’re blogging to help others, great. If you’re in it to make money off of your readers, then I would expect you to have a degree of some sort. It’s one thing to blog because you want to say “hey, people, this worked for me, and while it may help you if you decide to go the same route, just wanna let you know up-front I’m not a doctor and I don’t know the ins-and-outs everything, so you follow it at your own risk, k?”, but to blatantly give lifestyle prescriptions (may as well call it that) to others or their family members is a bit too far, I think.
This, exactly.
He lost all reason cause he was in fact charging for dietitian work, without being a dietitian. It is not about free speech, it is about an unlicensed professional.
I actually have spent a lot of time reading his site (as a type 1 diabetic) and I know he is on to something with the paleo lifestyle – it definitely helps me and I think he is right about the conspiracy behind the ADA, etc. – pushing high-carb, low-fat, unhealthy diets (unhealthy for EVERYONE – just read Michael Pollan’s “In Defense of Food”).
However, you’re right – there are people who have other underlying causes of their diabetes that may or may not be helped by improving their diet, and while it wouldn’t hurt for them to try it, it does seem to give off a “sanctimonious” attitude. And whichever way you look at it, Mr. Cooksey really does want to help people.
I don’t think you should use a dietplan and take corrections to your diet through the internet alone. Similarly I don’t think it is advisable to offer a complete diet plan and suggest changes to people their diet when you only know them through the internet.
Theres just not enough information going both ways and the information has a higher degree of unreliability.
You should always discuss ideas you learned on the internet with a trained professional, who face-to-face can get a better idea of how things are affecting you.
They also might ask or check for information that can complicate things for you, that you yourself or another untrained person might not have considered of being of importance.
And the one rule of Diabetes: it is different for everyone. I think websites on diabetes are immensly helpful in spreading information, ideas, inspiration and encouragement.
But they should not prescribe things based on personal experience, cause while we’re all on the same journey, we all have different bagage, methods of travel and startingpoints. (look it’s a travel metaphor! +1)
Good post. Will be following the developments of this case closely. I don’t believe in censorship either but I do think this guy crossed a line by charging for his services.
The elephant in the room of this argument is the professional advice long held by the Dietitian and medical estsblishment. The routine recommendation for diabetics and others is to consume about 55% of calories as carbohydrates. That level of carb consumption has created poor blood sugar control for many diabetics. The source of this dietary advice ultimately lies with corporate agribusiness’ undue influence on government (USDA) and even the position held by professional dietetic associations.
The established bias towards low fat high carb diets do at least some of us a great disservice and ultimately contribute to nasty diabetic complications.
I support the Diabetes Warrior’s pushback against the dietetic status quo. I do not support, however, his hanging out a shingle and charging others for his diet advice.
Thanks for this blog, Mike! This has worried me for years. I give advice all over the Net based on my own experiences, but I would not dream of charging people for it. I wrote a book about my 66 year autobiography with type 1, and people do pay for it, but it is not a book about how to have good diabetes management. So, I think I am safe.
I have two Facebook friends who are charging people for advice on using diets to reverse diabetes. One of them wanted me to join her and be an advisor and consultant in her business. She said I would earn money by working with her. I backed away and refused to cooperate! We are still friends. I recently asked her how her business is doing, she did not reply. I am thinking she may have encountered many problems with her “customers”.
Great blog, Mike. This is a legitimate concern for bloggers, especially in the states of Ohio and North Carolina. I feel the bulk of the concern belongs at the the feet of the
Academy of Nutrition and Dietetics (AND, formerly ADA). Not being a lawyer and not having access to the papers filed in this lawsuit, I still need to wonder if they are only limiting the lawsuit to NC. If this is the case, then it may be wrongly filed. The suit should be against the AND for attempting to become a monopoly and unfair trade practices. When people with degrees in nutrition and even PhDs are forced out of business, as is the case in Ohio and NC, because they are not licensed by AND, this should be illegal. In their website, the AND clearly states that this is the competition they wish to eliminate or at least chase to other organizations already licensed to dispense nutrition information. The mafia style tactics has driven competing organizations in California to work hard to have the current law there revised to eliminate some language or repeal the current law.
There are some dietitians doing an excellent job, but we don’t need elitism as we have enough of that in other diabetes supporting organizations. If the pace of diabetes diagnosis increases as expected, there will not be enough certified nutritionists/dietitians to fill the void. What is a person with any type of diabetes to do? I do not want my choice of nutrition advice limited to one group.
So asking people to be trained for their jobs is “elitism” now? Are you ok if I set up an endocrinology office, then? I mean, I didn’t go to medical school, but it would be elitist to require me to do so. What about if I take a job as a bus driver without having a driver’s license? Or if I design a bridge? Engineering degrees are also elitist.
The Diabetes Warrior crossed the line LEGALLY, because he was charging for his services. This is NOT A CASE OF CENSORSHIP. He was charging for his services. BTW, everybody keeps saying he’s just offering his “advice” on his website, well, “advice” is suppose to be free. If he was just giving advice, this wouldn’t have happened.
[...] It seems like Mike Hoskins over at Diabetes Mine has something insightful every week. This week, he’s talking about the delicate balance (my words) between being a blogger advocate and a blogger bloviator. And the delicate balance between using the power of the law to protect, and using that power as censorship. Interesting food for thought: http://www.diabetesmine.com/2012/06/caveman-blogger-lawsuit-raises-important-censorship-questions.ht… [...]
@Rich – I think this IS a censorship issue with implications for the blogosphere, simply because Steve is/was a blogger, sharing lots of information and “advice” online. If he’d simply been some guy trying to open an offline nutrition counseling business without a license, that would be a different case altogether.
I think the point of our post here is that this case shines a spotlight on online sharing and counseling, and where one should draw the line between the two. And what are the legal implications?
I have lived on this Earth 70 years and have seen, heard, and lived though many medical “truths” over those years that later were found poor if not false information. Amazing!!! My though is simply… who is making the money at the expense of Diabetics? Who came up with the idea of diabetic nutritionists in the first place. Ah, maybe a person like Steve who lobbied for licensing for an occupation which would paid them for their time to tell us what to eat and when.
Great article Mike! Like so many others have already said above, I don’t like censorship but this guy has crossed the line. I love the fact that there are so many dblogs out there for us to read (however we need more T2s!!!). I think it’s important to educate ourselves about all the possibilities out there that may help us to control our diabetes. Then it’s our responsibility to find what works for us! The “just do this and you’ll be fine” attitude gets under my skin. Thanks for a great article that sums things up so well.
Good for Steve!
Type 2 diabetes is a disease of carbohydrate metabolism. Cutting carbs WILL help any type 2 diabetic.
It’s no coincidence that Type 2 has ‘taken off’ since we were introduced to ‘healthy eating’. It’s a classic case of cause and effect.
But you don’t have to take Steve’s word for it, or mine or your diabetes dietician’s. You can easily test the claim for yourself in just one day – or really one meal. Just do the one-day test as spelled out on Cure Diabetes With Diet.
Don’t knock it until you have tried it.
For those of you following this story, a really huge update just came about. Read this article to get the latest, it’s pretty shocking and I myself am seething mad:
http://www.forbes.com/sites/michaelellsberg/2012/07/10/american_dietetic_association_2/
[...] Steve Cooksey took his health into his own hands when he discovered he had type two diabetes. Ignoring traditional medical advice to eat grains and a low fat diet, Steve began eating a “Paleo” cave man diet. He got healthy and blogged about his success. Now, the state of North Carolina wants him to stop passing along his information and advice as he is doing so without a license. [...]
[...] type two diabetes diet can be eased by allowing gumar (gymnema) to act as the" sugar destroyer". Type Two Diabetes Diet and Gymnema, a Destroyer – How They Relate When looking at Americans from the…ern states are more laid back in their ways. You may also notice we fancy, as a country, the type [...]
This is a disturbing trend and it seems that many of the replies here support it. There are MANY Dr’s who are trained and have licenses who give out REALLY bad Diabetes advice. I’m sure all Type 1s have been treated by MANY Dr’s as Type 2s and given advice that as either misguided or could be deadly depending. When I was diagnosed the Drs advice was to watch my Diet. My A1c was 19…. Diet ? Really ?
I see this as similar to the certifications in My Business. I’m an IT analyst and I have 20 years experience but NO degree and no current certifications from the Paper Mills. I’ve worked with MANY people over the years that have all the certifications from MS or cisco or who ever BUT they have NO practical knowledge and therefore advice they give is either just plan bad or can be catastrophic. Many of them have no logical thinking skills either. In my industry we call them “Paper MCSE’s” All school work and no practical knowledge. They often get really good jobs at high pay rates that they cant do and in most cases cant keep. Luckily my industry is tolerant of people with no degeree who want to make a living. As a country we should do what we can to help people to make a living. Let the buyer beware