Old souls, test strips, and toilet seats: 28 hours in Indianapolis

The hosts with the most

By now, everyone out there knows the basics. Roche, a big player in meters, hosted the first ever Social Media Summit at their American Headquarters in the city of Indianapolis. They flew 29 of the most… ummmm... vocal… D-bloggers in from all corners of the country. Why?

This question has been floated since the event was first announced, and the views of my peers ranged from mild concern, to healthy skepticism, to severe skepticism, to out-right hostility towards our hosts. Some folks thought they were trying to figure out how to leverage the blogosphere for marketing purposes. Other’s thought they were trying to win us over or buy us out, by wining and dining us. Others kept an open, “let’s wait and see” attitude. One of my more free-thinking nurses speculated that they wanted to get all of us D-bloggers into one room so they could blow us up. “Just think,” she told me, “they could solve all of their public relations problems with just a few sticks of dynamite.”

I told my wife that if the only Roche person in the room was a junior administrative assistant to the Vice President of Marketing I would run for the door.

But seriously, I gotta give Roche credit. They stuck their corporate neck waaaaaaay out by inviting our particular den of vipers out to visit them. The role count in the end was 29, up from the planned 25. This gave VP Dan Kane 29 opportunities to be miss-quoted or quoted out of context in the most read diabetes blogs on the planet. Put another way: 29 opportunities to get his ass fired. So what did he, and the rest of Roche really hope to gain?

Some background on Roche. The mother company is Swiss, with the full name of F. Hoffmann-La Roche Ltd. The company’s roots go back more than 110 years. They are now a global health care giant with 80,000 employees worldwide and 2008 sales of 45.6 billion Swiss Francs, according to their annual share holder report. Using the Google calculator, that works out to about 42 and a half billion (with a “B” ) dollars, making Roche more than twice the size of J&J in earning power; and in 2008 they were up 6% over the previous year. In fact, they are doing pretty damn well just about everywhere.

Oh, except in the U.S. meter market, where they are getting the shit pounded out of them.

Their annual report understates this by saying the decline in meter sales is due to “strong competition in the U.S. diabetes care market.” I’m guessing AgaMatrix/WaveSense is largely responsible for their diminishing fortunes, but no doubt Power house OneTouch (of the J&J family) with their sexy “Mini” may have taken a bite or two out of Roche’s lunch.

Roche is broadly dived into a pharma division and a diagnostics division (it was the American Office of the Roche Diagnostics who where our hosts.)

The pharma half of Roche makes Tamiflu, the med that can greatly reduce the impact of flu if taken quickly on onset, and has been shown effective against bird flu. At the clinic, following the swine flu debacle, the Department of Health supplied us with “in case of emergency break glass” doses of Tamiflu for the entire staff. Just for in case.

The Roche pharma division also makes highly effective drugs for treating Hep C, and they are doing large scale trials on Avastin, probably the most exciting cancer drug ever. It reportedly halts the growth of new blood vessels to tumors. This is huge. Vascularization is how tumors grow and spread. Cutting off the ability of tumors to have their own personal supply lines inside your body is the equivalent of a medieval siege of a castle. You don’t need to breach the walls of the citadel to win, you starve your enemy into submission. Cut off from oxygen and sugar supply to the tumor, and the cancer will wither and die.

On the diabetes front they have a Byetta-like competitor called Taspoglutide in advanced clinical trials that is a once-per-week shot. That med has been slowed down by the FDA’s new cardiac risk assessment regs following the Avandia mess. They also developed a DPP4 inhibitor (a’la Januiva) but made the decision to “out-license” it, rather than foot the cost of further development.

The Diagnostic division makes both consumer products, like our blood glucose meters, and high end hospital testing stuff for a variety of purposes. Worldwide sales from Roche Diabetes Care, by itself, added 2.7 billion U.S. dollars to Roche’s Swiss bank accounts last year alone.

So Roche’s stated purpose for hosting the Summit could be summed up (in my words, not theirs), as follows. Hmmmmm….These D-bloggers are a powerful force. We watched Novo step on their own dicks with the Twitter Debacle and J&J with their YouTube mess. These people shape decisions. We want on in that. But we don’t want it to blow up in our faces. We want to know what your sacred cows are. What is holy ground. Where are the mine fields?

They want a seat at the table, and rather than just barge in and sit where ever they pleased, they are asking the maître’d if there are any seats available.

They were, I felt, pretty up front. They promised this would not be a day-long Roche add. They kept their promise.

Beyond keeping their word, they treated us well. They paid our air fare. They put us up in suites at the Sheridan. They fed us, with high regard for our varied dietary needs. They treated us with respect. All they asked us for was honesty. And boy, did they get an earful of that!


Meet and greet

George “NinjaBetic” Simmons related a surreal moment to us at the post-meet and greet party. We had assigned seating at the meet and greet. At my table I was delighted to have Scott Johnson, David Edelman, and Sandra Miller; along with three Roche marketing folks. We had a delightful and civilized meal, nothing seemed weird to me. Feedback from others, however, made it clear that their dinner companions had been given assigned reading. George says as soon as he sat down a very stiff executive said to him “ so you call yourself a Ninja?”

For probably the first time in his life, George was left speechless.

So you can argue that this was a case of doing your homework. Or something more nefarious. Kerri “Six” Morrone-Sparling related to me that her dinner companion asked if she had brought her cat “Sausage” with her.

The meet and greet was heavily populated by Roches, so to speak, with a close to 1:1 ratio of bloggers and Roche people, but at the actual summit the next day, the Roche presence was barely felt.


The meat of the low-carb sandwich

The morning was devoted to looking at ways the individual cells of the diabetes blogosphere could function as a single organism. How can we work together to better advance the causes of people with diabetes and use the power of our numbers to bring about change.

Some great ideas were floated that I’ll post more about in the future.

After lunch we dug into what Roche really said they wanted to know. The do’s and don’ts of our cyber world.

There was some productive feedback, such as “Thou shall not comment spam” and such, but that but an unexpected theme emerged beyond the social media sphere. Giant Roche Accu-Chek adds decorated the conference room that we took over. You know the type, smiling, happy, clearly non-diabetic people doing clearly non-diabetic things with their meters showing clearly non-diabetic numbers on them.

The Roche folks got an earful about this, but when I talked with Lisa Huse, who is one of the marketing folks with the title of Director of Strategic Initiatives, she told me that when they try to do ads with more realistic numbers on the meters they get an earful from another noisy and powerful group: doctors. Apparently the docs have the same kind of fits we were having when ads show out-of-range numbers.

I suggested a three panel ad. In the first panel is a haggard looking individual holding a meter that reads 412 mg/dl. In the next panel he’s looking quite a bit better and his meter says 238. In the last panel he’s clocked the notorious 104; and now he’s looking very healthy and Hollywood. The tag line could read: Accu-Chek, guiding you to good health.

Let’s see if they go for it.


Who we are

The group was very heavily Type-1. In fact, there were only two Type-2s present and a couple of Type-3—in this case parents of Type-1s. As Type-1 Diabetics only make up 5% of the overall diabetic population this caused some folks to question why this was the case; although it accurately reflects the fact that our 5% is doing 95% of diabetes advocacy work. I think I have the answer(s).

Type-2 is so much more common that support and information is more readily available to these patients. We are so rare we don’t often meet each other in the wild. That’s why we’ve turned to the internet. That’s where we get our support. That’s why we can deeply love people we’ve never met in the flesh. That’s 50% of it.

The other half of the equation is that T-1 is arguably a more intense of an experience from day one than T-2 is. Its rapidly destructive nature forces us to learn quickly. We suffer more, and we are driven to put that pain to good use. The nature of our disease forces our survivors to become advocates. It is that simple. Our disease makes us who we are; our scarcity makes us rule the internet.

But I realized as folks talked, that the social media can be broken into three categories and three “waves.” There are bloggers, journalists, and community leaders. Then there are old veterans, the middle wave who universally acknowledge the contribution and influence of the vets, and then there are newbie’s.

I hadn’t thought much about it, but I was one of the vets, and as much as I HATE the word, I finally had to accept that I’m a buh… buh… buhlog…. Oh hell, I still can’t say it.

So the bloggers write for themselves, for the cathartic cleansing nature of writing to heal the soul. They are happy when people read, comment, are inspired, or helped by reading the blogs; but that is not why bloggers blog. They blog for themselves. They are driven to write, it is their medicine.

The journalists, of which I think Amy Tenderich of DiabetesMine is actually the only one, are driven by the need to tell the truth, Walter Cronkite style. She has a focus of diabetes, and a desire to write about everything inside this world, not so much from a personal perspective, but from a balanced truth perspective. Amy is our New York Times, our CNN. And like any good journalist, Amy just loves a scoop!

Ahhh…the community leaders. These are folks like Manny Hernandez of Tu Diabetes, Gina Capone of TalkFest and Jeff Hitchcock of Children with Diabetes. These are the people who want to change the world.

All three categories bring a slightly different perspective about money and influence to the table. Many of the bloggers, while poor, are very leery about any commercial presence in their wild-west space. Amy, the journalist has a traditional approach. All papers and magazines have advertising. She has subcontracted that function out. She doesn’t touch it or pay much attention to it. She writes what needs to be written. If the advertisers don’t like it they are free to leave. But they don’t. They know the eyes of the world are on her site and they want to be seen.

The community leaders have a different problem. They hold the beliefs of the bloggers, but need money to exist, to support the expansive infrastructure, maintenance, staffing, and mission of their communities. Many have accepted sponsorships, a move which has created a range of back-lashes from their members.

Into this new chaos Roche wants a seat at the table, not even realizing that there are three tables.

Calling Roche

Ever look at the back of your meter? See a phone number? Yep. All meter companies have help lines. Roche’s is manned 24-7 and eats up most of the first floor of their HQ building in Indianapolis. The call center’s boss, who you will be glad to know is a T-1, gave us brief run down on the operation and played excerpts of a half-hour long call from a de-identified patient.

Most call centers, in my experience, are either housed in the South Carolina Women’s Penitentiary or in India. It will probably surprise you to learn that to work in the Roche call center you need a four-year degree. So for those of you art history majors, here is your big chance…

Best personal “ah-hah!” moment

Allison Bass is one of the D-blogging vets, but even so, is one of the youngest of our number. In discussing the various technologies that can be used in reaching D-folk she referred to herself as a “Digital Native.”

Wow.

That put the whole world into a new context for me. She grew up in a digital world. Things are different for her than for me. Most of my life there were no “home” computers. All of her life there have been.

So this gives me an opening for a totally selfish plug. To address the non-techno phobes (pretty much everyone but me); there is now a Kindle version of The Born-Again Diabetic, and a Kindle version of the Taming the Tiger book will be out soon, soon, soon.

Here a CGM, there a CGM, everywhere a CGM

Call Guinness. I think we may have broken a new world’s record for the most number of CGM units in a single room. I don’t have an exact count, but I know for sure two of us were wearing Guardians, there was one Navigator, at least four Dexcoms and I think several of the Paradigm-wearing folks had CGM feeds.

This was waaaay cool for me, as I used to be practically the only person on the planet with a CGM; and now it is becoming, while not common yet, at least NOT unusual. It’s a good thing. A very good thing.

Verbal Fist fights

The tone throughout the event was respectful and professional on both sides, up to the last second. That bummed me out a bit. I would have preferred to end on a good note. It started with a blogger DiabetesRockStar (a.k.a. Christopher Thomas) trying to pin down a Roche suit on the cost of making strips.

He basically said, “I cannot tell you that. I’m not allowed to discuss that kind of thing.”

RockStar pushed, using the approach of you-want-me-to-trust-you-but-you-don’t-trust-me. It was a bad place for the suit to be in. Remember that Rock Star, being newer to diabetes than most of us, is still angry; rather than jaded and cynical like the rest of us “older” hands.

Anger is good. We need anger in our movement too. And if Roche truly wants to understand us, they need to understand that anger comes with the package too. Scott King and Fran Carpentier also joined in, pushing Roche to take bold action to reduce the cost of strips.

The Roche suit was out of time, we needed to leave pretty much right then for the strip tour and to catch our flights. He could only say it was much more than a penny a strip. In fact, he allowed as how he wished to hell they could make strips for a penny.

Best ego moment for me

The personal best moment for my ego was on the first night after we all arrived. We were scattered around the living room of a suite at the Sheridan after the official meet-and-great. We were soaking-in the pure joy of each other’s presence. Some were in chairs, some were on the couch, some sat cross-legged on the floor or leaned on walls. We were together. A family reunion of people who had never met before.

I cannot describe the pure joy and love we felt being with our brothers and sisters. It is a time I will hold dear to my heart until the day that I die.

Someone pointed out that there was more than 500 years of diabetes experience in the room. That was true, but there was also more than 500 years of diabetes pain in the room. The love for each other ran deep, but so too did the group scars of dealing with the 24-7 grind of a deadly and insidious disease. It was a gathering of the most amazing group of driven and wounded souls you've ever seen.

One of my peers told me that everyone was pretty much what he expected, based on each person’s writing. And this was true. There were no surprises, but to meet some of my best friends in the world in the flesh for the first time was an astounding experience.

Even though we knew each other, we did a round of introductions. When I came my turn I started with my name and said I was the author of The Born-Again Diabetic where upon I was interrupted by a spontaneous round of applause. Wow. That was one of the greatest moments of my life. The diabetic writers I love and respect most honored my book, and me, in the most amazing way.

A test strip by any other name is a dollar bill

I was disappointed, at first, to find out the strip tour was not a fieldtrip to Indianapolis’ finest skin clubs, but rather to a plant where they make test strips.

Patients often say to me, “what are test strips made out of, gold?” You know what? As a matter of fact the little fuckers actually are. At least the Aviva strips. Roche graciously gave us a tour of the plant where they make the Aviva strips; which I found amazing and more eye opening than I expected.

According to Roche’s annual report for 2008, the Aviva is their largest selling meter and is said to have posted “strong double digit growth” last year.

We broke into two groups and my tour was lead by Bryan Langford, who is the Director of the Product Supply Team, according to his business card. I noticed that the titles on various Roche nametags often were different than their businesses cards. I think this guy was basically the plant manager.

He was a gracious and open host, who answered honestly and frankly a variety of probing questions put to him by David Mendosa, myself, and the rest of the gang. The cost of strips is a big mystery that is often argued about in the D-world. Roche execs ducked the question of the real cost, but I’ve come to realize by seeing what goes into making them, that this question is not as simple as it might appear.

First, for no reason at all, I had assumed that strips where made in big sheets then cut apart, like 100 dollar bills at the mint. This, at least for Aviva strips, is not the case what-so-ever.

They are made from rolls that look like reel-to-reel audio tape from the old days. Well, reel-to-reel on steroids. Step one is a plastic base covered in a layer of gold leaf. Yep. Real gold. At speeds that rival the space shuttle on re-entry, lasers zap circuit boards into the gold by vaporizing some of the gold.

Then the rolls move to another machine that is longer than my house, where a chemical is applied to a portion of the stip. This chemical is the magic formula that powers the chemical reaction with the blood. It is what allows the whole system to work. Squirting the liquid on only takes the first five feet of the machine, the rest of it is a giant drier.

Once the chemical is on, and dry, the reels have to be quarantined for 24 hours in rolling vaults to season or whatever. Yet another machine creates the sandwich of base, sponge, top, and also trims the tips to make it easier to wick in the blood. At this point they look like long picket fences. The final machine cuts the strips from the rolls into onesie-twoises and stuffs them 50 at a time into vials.

Next door, the packing department looks more like a bottling company featured on HGTV; than the X-Files film set where the strips are made.

A race track of conveyor belts whip the vials around the room where they are bar coded, pressure checked, labeled, married to package inserts and coding chips, boxed, cartoned, palleted, and ready for shipment.

Throughout this entire odyssey there are dozens of places where strips can be kicked off of the line if they aren’t up to snuff. About 10% of the production run is rejected for any number of reasons ranging from a poorly cut circuit board, to a lose vial lid, to a smeared bar code on a label. At various stops along the way random samples are pulled for testing too.

The numbers of strips they make at this plant boggles the mind. Roche has something like a 50% share of the global test strip market and about 25% of the overall domestic market. I don’t even remember how many strips they make per minute, hour, shift, day, week, month, and year. It is one of those national debt kind of numbers that doesn’t make sense to the human mind anyway. I’m sure one of my peers will remember and report.

As many of the details of the process are corporate secrets they asked we not take pics, but did supply us with some we could post if we wanted to, but frankly, the images were lacking in style and quality, so you’ll have to settle for words from me to paint a picture.

I was amazed they let us see the operation. In some ways it is sort of like giving the foxes a tour of the hen house. Amazed but grateful. Strips are really not as simple as I had thought they were. I value the perspective it gave me on what goes into making strips.

An hour before several of my peers angrily called for Roche to slash the cost of strips during theses economic hard times. Truth be told, I believe it would do no good. If Roche cut the cost by half (if they could without losing money) I believe that you and I would not see a penny in savings. The distributors, pharmacies, and insurance companies would pocket the difference and our co-pays would be unchanged. Cutting the retail cost in half still places strips above the cash-out-of-pocket affordability level if you have no insurance at all.

Now to the cost of the test strip. I have often heard it reported that the strips cost a penny each to make. I no longer believe that to be true, although it is possible that the raw materials might average out to a penny a strip. Maybe. But probably not.

Kelly Close of Close Concerns told me her organization estimates the cost of test strips to be in the neighborhood of a quarter each. That said, I don’t know what costs Kelly is counting. To make a single test strip you must:

Pay for the raw materials. In this case, a ribbon of gold on a plastic sheet, the chemicals that power the reaction that divines the amount of glucose in the blood sample, the sponge that wicks the blood into the guts of the strip, and the covering material. Of course a test strip doesn’t come without a wrapper. You need a tub to put them in, and that tub has to have a moisture-absorbing lining. The tub needs a label. The tub needs a box. The FDA requires Roche to put in a package insert into every box which we throw away without reading. In the case of Aviva, each vial needs a coding chip. Each strip must shoulder 1/50 of the cost of the tub, label, box, insert, and chip.

You must pay of the equipment that makes the strips.

You must pay for the maintenance of the equipment that makes the strips.

You must pay the humans who run the machines.

You must pay for the building the machines and the humans are in. And that building needs lights and heat and cooling. And you have to pay property tax on that building.

You must pay to store the strips, to ship the strips.

You must give the distributors a cut. And the pharmacies.

And you gotta make a profit, or what is the point, anyway?

What does a strip cost to make? Hell, I have no idea, but it is more than a penny.

Disclaimer: I find the Aviva to be a miserable meter. It is big, has to be coded with a chip that slips into the back that patients always forget to change, has no backlight, and uses infrared to download data into a very inflexible software platform that I hate. I had always regarded it as a very old meter, so I was surprised to learn the plant I was touring was only four years old. The technology of the meter is easily 10 or 15 years old, a pathetic testament to how long it takes to get stuff through the FDA. My host couldn’t answer my question about how much the plant cost to build, he honestly didn’t know. But looking at all the one-of-a-kind equipment that fills the plant you can be quite sure it cost major bucks. Many millions plus.

The Roche folks were pretty closed mouth about what is in the pipeline, for among other reasons it is against federal law to talk much about what is pending in front of the FDA. That’s how Abbott got into trouble with Navigator and why it took so long to get approval. But out in the rest of the world some interesting stuff is happening.

At a display case in the hall way of the Roche plant was a sharp looking red, white, and black meter called the “Performa.” It was launched in “most markets,” but not in the U.S., in 2008. It is waaaaaaaaaay sexier than Aviva, but still manually coding.

In Europe they now have the Aviva Nano:

A sleeker, more “discreet” high-tech looking design.

But what is really exciting to me is a whole new way of testing housed in the Accu-chek Mobile, a meter that, according to Roche’s Swiss web sites, doesn’t use strips at all.

It uses a “continuous tape” of 50 tests for a strip-free technology. With a built in lancing device, this is all you would need. If you could make phone calls and play MP3s on it, what more would you need?

Lunch with Moses

OK. It wasn’t lunch. It was a bus ride. And it wasn’t Moses. It was David Mendosa. But the effect was the same. David is the elder statesman of diabetes. He is six-foot-three-inches tall—we all look up to him both literally and figuratively. He carries himself with patrician grace and power, but is free of ego and pretense.

It was an honor to spend time with him.

Hanging at the airport with Amy

My adventure ended with some quiet time with uber diabetes journalist Amy. She was on standby for the plane I was on. Bummer she didn’t make it. But it gave us time to chat and let our mutual adrenaline from the intense night and day return to normal. I’ve always admired her keen mind and swift pen. If it’s happening in diabetes Amy will know it. She considers herself a blogger, but she’s really not. She’s a professional journalist who writes about diabetes with a hint of blog-style writing.

And she is as much a treasure in person as she is on the web.

We were drinking Starbucks, post-gaming the Summit, and sharing pictures of our kids. Naturally, our conversation turned to writing.

I’ve got two book projects on the front burner now that the Tiger Book is done. One is my delayed CGM book, the other a newer idea for a handbook for doctors helping them understand what makes us tick. She was pushing me to do the Doc Book first, “we need it more,” she told me.

It was a theme I heard many times, from many people, over the course of the last day: we need to find a way to get doctors to “get it.” Whether I’m the best person to take this one on is or not debatable. It is true that I speak three languages: Patient, Diabetes, and Doctor.

But just being able to speak Doctor may not be enough to deliver the message. I’m not a Doctor, and in general Doctors seem ill-inclined to take advice from patients. I can write it, but I don’t know if they will come.

And that pretty much covers everything, except the toilet seat covers.

So I gotta tell you about the toilet seat covers at O’Hare. There is a sensor on the wall; you wave your hand in front of it and with an efficient whirring noise an anaconda-like plastic toilet seat cover wrap slithers around the seat taking away any germs (or worse) deposited by the previous user and giving you sparkly clean and dry place to put your tush.

We just had the 40th anniversary of landing a man on the moon. And what do we have to show for it since? Gold test strips, the battered souls of the chronically ill, and automatic toilet seat covers.

Hmmmmm…. makes you wonder.