LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Monday, August 10, 2009

Sleeping with drug reps

The headline is only figurative, damn it. I guess by now everyone knows about my fascination with a particular drug rep who lucky for me doesn’t fool around with married men. Sigh...

Annnnnyway, one of the things I had hoped to get out of the Social Media Summit at Roche was some ethical guidelines for those of us in social media about our relationships with the Pharma folks. We spent a lot of time laying out our mine fields and sacred cows to them; but we didn’t really turn the table on ourselves. We only skirted the issue.

The problem is Pharma, literally, has all the money. We have none. We want our voices free and independent but you can’t talk if you starve to death.

Amy of DiabetesMine treats her blog like a newspaper. There is a clear separation of editorial (what she writes) and advertising. Quality journalistic publications for generations have done this. The journalists cover the news. If advertisers get caught up in the news and don’t like what is said about them they are free to leave. Amy has even out-sourced the advertising part of her site for further separation.

On the other extreme, Kerri of SixUntilMe has accepted site sponsorship from DexCom. In her words: DexCom is a sponsor of www.sixuntilme.com and provides DexCom products to Kerri. All content is that of the author and not reviewed or approved by DexCom. Six Until Me can't be bought or sold. There isn't anything posted or endorsed that the author doesn't believe in. The author believes in every stitch of this blog. That's the bottom line.

DexCom doesn’t have Kerri on payroll by any means, they give her the CGM sensors that she needs to have to stay healthy. Sensors her fucking insurance company won’t provide for her. Would Kerri have accepted a sponsorship if her insurance covered her health needs? I very much doubt it. Like I said, Pharma has all the money. We have none.

In between are product samples. I’ve accepted samples to review, and the company who samples me takes a chance. I might rave. I might trash them. My call, their risk. But that is onesie-twosie, not an on-going relationship.

I never accepted ads at my site, it just never felt right to me. Even though it has become standard practice in the blogosphere, I never did. Don’t get me wrong, I’m not saying I think it is bad to do so. Quite the contrary, adds on sites I read don’t offend me or bother me.

Blog wise, avoiding conflict has been easy for me. But as a bricks-and-mortar author things are quite a bit different. Blogs are free. Books cost money. Big time. They need to sell.

My first book is doing fine on Amazon and elsewhere, but writing the Tiger book put me on a collision course with my own ethics. Taming the Tiger is written for folks who are too sick to go look for a book. It really needs to be handed to them on the day of diagnosis. With that goal in mind I dove into the confusing and confounding world of grants and foundations.

And I found myself in the same position Kerri was in with sensors. I couldn’t get grants to place books because I’m not a non-profit organization. Neither is my small publisher, not that Red Blood Cell Books is making any money in this economy, but in theory they could. Foundations, it turns out, don’t give money to people who ask. They find people on their own.

I know some folks who run non-profits. But you know what? Money is really tight out there. They are having trouble funding their own mandates. They don’t want to compete against themselves to help me.

I could start my own non-profit. Maybe. Costs money. And it takes time. Look at your clock on the wall. Every 20 seconds someone in our county is diagnosed with diabetes. Three every minute. 180 every hour. 4,300 every day. 30,100 every week. 120,000 per month… They don’t have time, so I don’t have time.

So… how can I get books into the hands of doctors to give to patients…yeah, I see the 800 pound gorilla standing in the corner, but I’m ignoring it…think, think, think. There must be some other way.

But the best way to get the books to the doctors to give to the patients is to used the 800 pound gorilla. The pharma reps call on virtually every medical office in the country. They used to give doctors golf clubs, Hawaiian vacations, hookers… But one step ahead of the law they now all work under a new self-imposed code of ethics that has even done away with the drug rep pen. Now all reps can leave are patient education materials with a value under one hundred bucks. Hmmmmmmm…

And so I found myself floundering in grey water. First, ego aside, I really believe this little book can both help soften the blow of diabetes diagnosis, and help the new members of our family get on the right road to healthy diabetes. And I really believe we need to get to books into the field. Right now. And obviously, Pharma is at least one very good way to do that.

A first I flirted with the idea of just contacting meter companies, kidding myself that they weren’t really pharmaceutical companies. But you know what? 90% of meters are made by the big players who also make everything from band-aids to chemo drugs.

I agonized for a looooong time; then took out my tarnished, battered, and dented moral compass with its cracked glass crystal. Which direction do I go? Follow the logic of my mind or the beating of my heart? If drug reps give my book does it imply an endorsement of their product? It is neutrally written, but they will want their name on it somewhere, even if just a sticker saying “a gift from your friends at Big Pharma.”

In the end I asked myself the question I always use to navigate through ethical grey waters in health care: what is best for the patient?

So if I believe that Tiger is a valuable tool for the newly diagnosed, that is most effective given at the time of diagnosis, then I need to swallow my pride and use the obvious resource standing in the corner.

I sat down and wrote a letter asking for help and sent it, along with a sample book, to every company in the United States that sells diabetes drugs or supplies. Now I’m waiting to hear back. Bottom line: why sleep with one drug rep when you can sleep with two? Or three? Might as well make it an orgy.

And if Brand X buys 50,000 Tiger books then does something trash-worthy, will I trash them in my blog?

I wish I knew the answer to that question. I pray the day never comes when I have to get my battered moral compass out to find a way through that fog.

9 Comments:

Blogger Jodie Heflin said...

It is what it is. I appreciate what you are trying to accomplish and trying not to support one product or another. But in the end it's most important that the patients get the info. Good luck in your quest.

8:40 AM  
Blogger Tim said...

What a good, thoughtful article.

Personally I think it's a great idea for such a useful book to be "distributed" via the drug companies in this way.

I also think (from what I read on your blog) that you're old enough and ugly enough not to be influenced by Big Pharma in what you write, so I wouldn't worry about it. Much.

9:32 AM  
Blogger Kassie said...

It sounds like what you are doing is advertising your book, not entering into a sponsorship agreement, so I think the potential conflict of interest is minimal. Bayer sponsored and distributed my book, with their logo on their copies. If I were still blogging, and they screwed up big time, I'd probably call them out on it.

9:53 AM  
Blogger Mary C. said...

Wil, reach in your pocket, pull out your moral compass, flip it over the right way this time and look at it again. You are not endorsing their product, you are asking them to endorse yours. Do you think for one second that a newly diagnosed diabetic is going to notice or care whose sticker is on the book? At this stage do you think it's going to make them choose one brand of meter or medication over another? Hell no! They're going to take any freebies the doctor gives them. If they're lucky, they'll take the freebies their insurance company gives them. If not, they'll buy the cheapest brand at Walmart. But maybe, just maybe, they'll open that little book. And that Wil, is what really counts.

7:04 PM  
Blogger CALpumper said...

I agree with each comment. Especially Mary C.

What matters is the patients getting the book, getting the information.

Best of luck, I know you will keep us posted.

10:35 PM  
Blogger Bernard said...

Wil, thanks for a thoughtful examination of this challenging issue. I think your book is great and should be the first thing given to anyone newly diagnosed with diabetes...any type of diabetes. If a pharma company can help accomplish this then I think it's an example of a win-win collaboration.

I struggle with the dilemma of accepting things to review and being seen as in the pockets of various companies. I think that as long as I continue to agonize over this I'm probably doing the right thing.

5:32 AM  
Blogger Bernard said...

There's an interesting article in today's New York Times about regulators investigating ads on blogs. The cases mentioned in the article are clearly 'blogs' that are just advertising vehicles. I think things will start changing so disclosure becomes a requirements.

8:21 AM  
Anonymous Scott K. Johnson said...

Wil, your book is a gem (just finished it the other night), and like others have said, it needs to somehow get in the hands of every person diagnosed with diabetes, regardless of type.

By any means necessary? Maybe so.

11:21 AM  
Anonymous Stuart S. said...

Wil,

I think Mary C. nailed it. Get the book into the patient's hands by any means possible. I haven't seen the new book yet but, if it's half as good as the "Born Again Diabetic" it's worth every penny and then some.

I am anxiously awaiting your book for doctors.

5:29 PM  

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