ALL People With Diabetes Should Write to Their Senators About Signing the Casey-Burr Letter Today!

Today, I got an email from JDRF about asking me to contact my Senators to sign onto the so-called Casey-Burr letter to maintain a strong commitment to medical research funding at the National Institutes of Health (NIH).  Senators Bob Casey (D-PA) and Richard Burr (R-NC), who, incidentally, happen to be working on a nice, bi-partisan initiative (something we don't see very much of these days in U.S. Congress) asking fellow Senators to sign their letter to the Senate Appropriations Committee supporting funding for NIH in fiscal year (FY) 2013.  The letter requests that the Senate Appropriations Committee maintain a strong commitment to biomedical research and NIH in the FY 2013 Labor-Health and Human Service-Education Appropriations bill.  There's a risk funding which keeps researchers working on treatments and cures could be shut down entirely for a period of time due to the budget sequester if something isn't not done.

This impacts ALL people with diabetes (not type specific)

JDRF did not have a pre-written letter for this one but there was a LOT of room for personal comments in the form.  However, as I thought about it, I realized (thanks to Bob Pedersen's [@rpederse] very eloquent post, that this is not a type 1, type 2 or gestational diabetes issue, it's a DIABETES issue, and by that, it means it affects any person with diabetes.  True, JDRF has a reasonably well-organized government relations system (although the organization sucks at the state-level, incidentally, on September 23, 2004, Larry Soler admitted to me in an online chat which I blogged about HERE  [you read the old DiabetesStation.com transcript by clicking HERE] that the organization's advocacy initiatives are primarily at the Federal level.  Incidentally, Cynthia Rice is Larry's successor) which helps to get the word out about things like this, but doesn't it also make sense to ask why the ADA and others aren't advocating for this?  Perhaps that's asking for too much, but I don't really think so.

But I felt it was worth sharing what I wrote and the perspective I shared with my two Senators:


Dear Senator [Last Name]:

This issue is important to me personally.  In spite of a rapid rise in the incidence of diabetes (both type 1 and type 2), federal funding for diabetes has simply not kept pace.  For example, were you aware that the U.S. Federal Government's Bio-Medical Research Allocations by the National Institutes of Health totals $1.1 billion for diabetes research 2013?  On the surface, that SOUNDS like a generous allocation, but when one looks at the money on a per-patient or per-patient death basis, diabetes funding is significantly smaller than it is for other diseases including HIV/AIDS, Breast Cancer and even the West Nile Virus.

For example, using NIH statistics along with CDC's National Vital Statistics (Report Vol. 60, number 3 for the number of deaths attributed to diabetes), combined with the CDC's report of 23.6 million patients with diabetes at the CDC site (http://www.diabetes.org/diabetes-basics/diabetes-statistics/) reveals that we spend a mere $47 for each patient with diabetes, while on a per-patient death basis, the number works out to a more respectable $16,010 (although I would note that the cause of death for largest portion of people with diabetes is not diabetes itself, but from cardiovascular disease, hence the actual number per patient death associated with diabetes is likely to be far smaller).

Still, when one compare this to our spending on other diseases, such as HIV/AIDS, where the U.S. will spend an unbelievable $3.1 BILLION this year, which amounts to a stunning $2,818 per patient with this disease, or $329,576 per each patient death attributed to AIDS.  Breast Cancer figures, while not quite as generous as spending on HIV/AIDS, nevertheless amounts to a total of $711 million, and on a per patient basis, it amounts to $3,401 per patient or $17,308 per patient death attributed to breast cancer.  Each diabetes patient gets a mere $47 (that's right, just forty-seven dollars).

Can we really say the amount spent on diabetes is fairly allocated?
I don't think so.

The bottom line is this: the cost of TREATING diabetes is hitting the Federal Budget via money allocated to Medicare in a significant way (and with Baby Boomers retiring in record numbers, the numbers aren't likely to decrease any time soon), and yet the money we allocate to diabetes on a per patient or per patient death basis is really tiny.  But perhaps more importantly, the Casey-Burr Letter in Support of NIH Funding will at least ensure we don't allow this critical spending to be cut because of Washington's inability to agree on much of anything.  I urge you to sign the Casey-Burr Letter in Support of NIH Funding today.

Sincerely,
Scott Strumello
Your Constituent and a Regular Voter


Now, let me admit that I didn't bother to do the math myself; I rely on The FAIR Foundation's statistics (see http://www.fairfoundation.org/ for their site), but basically, if you do a comparison, here's what things look like when we compare our tax dollars allocated to the diseases I mentioned in my letter, but have a look at this graphic from The FAIR Foundation:

Note how I've circled (in red) the amounts allocated per patient for diabetes, HIV/AIDS and Breast Cancer.  Everyone with diabetes should be pissed off that our government thinks its being so generous that it spends $47 on each one of us, yet spends like $3,000 on each person with AIDS (which these days, is a chronic illness which is largely preventable) and even more on people with breast cancer.

You may find your Senators by visiting http://www.senate.gov/pagelayout/general/one_item_and_teasers/contacting.htm.  You can copy my letter, or write your own, but the most important element is to ask them to sign onto the so-called Casey-Burr letter to maintain medical research funding at the National Institutes of Health (NIH).

Spare a Rose, Save a Child

I wouldn't describe myself as a particularly sentimental guy.  However, there's an awesome initiative now underway that benefits the International Diabetes Federation's "Life for a Child" program and its nonprofit partner "Insulin for Life" (I covered both back in 2008, catch my post HERE for details) which I would encourage my readers to support this Valentines Day.  The idea is to take the typical "dozen roses," which are so popular on Valentine's Day, and save just one rose to spare the life of a child. "Spare a Rose, Save a Child" is simple:  Buy 1 less rose this Valentine's Day and share the value of that flower with a child with diabetes in the developing world.  Your loved one at home still gets flowers and you both show some love to someone across the world who needs it.

All you need to do is make a donation by visiting the IDF's Life for a Child website.  We've created a short link you can visit at http://bit.ly/SpareRoseSaveChild.

The reason this is such a huge issue is because if you live in North America, Europe, Japan, Australia/New Zealand or even most South American countries like Brazil, Argentina, Uruguay and Chile, and you have type 1 diabetes, you're alive because you were lucky enough to have been born in the right location where you have ready access to life-saving insulin and you can probably afford it, too.  But many children born in other parts of the world aren't as fortunate.  While some parts of the world (notably sub-Saharan Africa which not only lacks the funds for this lifesaving hormone, but beyond that, distributing insulin is limited by a lack of basic infrastructure such as roads.  In other parts of the world, although the infrastructure exists, the cost is simply out-of-reach.  On the latter point, we can blame the diabetes industrial complex for its pursuit of profit above all else, and their admitted goal of replacing non-patented first generation insulins with so-called "modern insulins" which cost more than twice as much.

Progress has been made, and its really a function of the developing world moving to sell its own products in the parts of the world it knows best.  Companies like Argentina's Laboratorios Beta, India's Biocon and Wockhardt, and Poland's Polfa Tarchomin (which first began making insulin in 1923) and rival Bioton, which has grown mainly by expanding into Russia, Ukraine and elsewhere in the former Soviet Union, plus India, Israel and having operations further afield in the Pacific region, notably in Australia, Singapore and China.  However, as I wrote previously (see HERE), Bioton has substantial debt, so its growth prospects are likely to be limited until the company can de-leverage itself somewhat.  There are a few others, notably China has 2 insulin manufacturers of its own (specifically Wanbang Biopharma and one whose name escapes me right now), although China is a regulatory free-for-all there, meaning Chinese consumers can't be 100% certain the product they're buying is really insulin or just plain water, as the case of deadly infant formula in that market a few years ago proves.  Consumers with the means are buying insulin from Western joint ventures to ensure they aren't buying water in a bottle that's marketed as insulin.

The companies based in the developing world are selling lower-cost first generation insulins in parts of the world where Novo Nordisk, Lilly and Sanofi aren't really targeting.  I suspect they will succeed because their goal is to serve the markets they know far better than the big 3 know.  However, we've seen how the big manufacturers have responded.  For example, Novo Nordisk acquired Brazil's Biobras back in 2002, and has subsequently been pursuing its strategy of discontinuing older insulin varieties that sell for lower prices with higher-margin products.  They won't get their hands on Argentina's Laboratorios Beta because the Argentinian government won't allow it.  They saw what happened when the local currency collapsed and Lilly did nothing about it, so they've made it a priority to protect their indigenous company from global giants walking in an snapping the company up.

My partner is originally from Manila, which is a fast-growing city in the Philippines which has most of what you can find here in the West, including a number of Starbucks locations which his nieces patronize pretty regularly, although the locations aren't as ubiquitous so its more of a treat rather than a daily occurance as it is in the U.S. for many of us.  Niece Jorene will be getting an iPhone 5 in about 2 weeks (hopefully she doesn't read this blog regularly!), which compares to the 4s that Jojo has.  They're pretty lucky to live in Metro Manila, but for kids that live in less developed islands of that country, things aren't so easy.  They lack the money to buy insulin, so it's hit or miss as to whether the family can even afford it.

Check out this thank-you note from a kid that has benefited from "Life for a Child":

http://www.idf.org/lifeforachild/countries/philippines

Even though I'm not sentimental, I absolutely melted when I saw that ("Salamat Po" is Tagalog for "Thank you", although you also see the word glucose and a simple message, and the reason is because the kids in the Philippines are taught in English, which explains why Filipino call centers like the one Jorene manages have done so well).  But other parts of the country are very much like where the most recent season of Survivor (in which Blair Warner, errr I should say Lisa Whelchel recently competed).  These are remote islands, and share little in common with the bustling city of Manila.  The families struggle on very little income.  Some Filipinos are writing news stories for American newspapers which they're paid pennies for (check out this NPR news story at http://tal.fm/468/2 for more). A U.S. company known as Journatic placed an ad seeking Filipino writers offered them $0.35 to $0.40 per story, and slightly more for longer stuff, but they complain they don't make enough for their work.  It doesn't take a rocket scientist to figure out that they cannot easily afford a vial of insulin at $70 each.  But when its all said and done, these are adorable little children, and the Life for a Child/Insulin for Life program saves their lives.

The next time you check your blood sugar, dose your insulin, or see someone you love doing one of these things, you'll know that you helped save a child like the one above by "sparing a rose".  Help spread the word about Spare a Rose, Save a Child on Facebook, Twitter (use #sparearose) or your blog if you have one.  Please spread the word about this initiative, for more background, read Kerri Sparling's post for details!

Divergent Business Strategies From Pepsi and Coke in Addressing Obesity

A number of years ago, Pepsico's CEO, Indra Nooyi (a Yale School of Management alumni), embarked upon a broad strategy to promote what she's called 'good for you' foods (or at least 'better for you' foods) by expanding the company's portfolio beyond just sugary soda and potato chips.  The strategy began even before she became CEO.  In fact, she's been pushing this strategy ever since arriving at Pepsico as a corporate strategist in 1994.  For example, she was instrumental in divesting the company of it's low-margin fast food chains (KFC, Taco Bell, and Pizza Hut, now known as Yum! Brands, Inc.), and pushed for acquisitions in this new direction, including buying companies like Quaker Oats (many argued the acquisition was an excuse to get its hands on Gatorade which rival Coca-Cola also wanted, but Ms. Nooyi argues otherwise).  Outside the U.S., she has acquired a yogurt manufacturer in Russia, for example.

In 2011, she told The Wall Street Journal (see http://on.wsj.com/khwcXf) that the company would stop what she called the "scorched earth policy" of scrapping for a point or two of market share in the shrinking cola market.

"What's been happening in this category forever: we, Pepsi, would push like hell to get a program with the [retailer], we'd spend everything, and get a tenth of a point of market share," she said. "The next period, Coke would come along, push like hell, and gain a tenth. This was a zero-sum game. The cola category was profitable, but didn't grow profits."

Pepsico has been pursuing a dual strategy for cola, Ms. Nooyi said. The company is spending money to maintain its base business but also is searching for a breakthrough in sweeteners that will yield a naturally sweetened, zero-calorie cola, what Mrs. Nooyi calls "the ultimate nirvana."

Ms. Nooyi said Pepsico has made "enormous progress" the last two years as it experiments with different sweeteners and is 90% closer to a breakthrough. "Unfortunately, the last 10% is the toughest part," she acknowledged in December at a conference hosted by Beverage Digest, a trade publication.

Wall Street Likes Coke's Stock Better, But Whose Strategy Is Better?

However, although Ms. Nooyi's moves have diversified Pepsico's revenue stream away from peddling empty calories exclusively, they haven't done quite as well for investors.  True, since becoming the first female to lead Pepsi in late 2006, the company's earnings per share have gained around 36%, and its sales have nearly doubled to $65 billion.  However, the big problem is that Pepsico's stock has done worse than other companies in the space - gaining just around 10% during that time. For comparison, Coca-Cola has done nearly 10 times better.

She could certainly improve that with some financial maneuvers which wouldn't help the company in the future but would push it's stock price up, such as with share buybacks which are all the rage in other industries such as pharmaceuticals, for example.  Her belief is that without a big piggy bank of cash, the company may be unable to make important acquisitions as they did with Quaker.  Ms. Nooyi is a strategist, not really a short-term numbers executive, having done stints at  Booz Allen Hamilton and Boston Consulting Group.  But some on Wall Street are losing patience, with some big institutional shareholders pushing for her to step down, while others are calling for the company to split itself up (splitting the drinks business from the snacks business, for example).  None of those have gained much traction, but if Pepsico's stock price doesn't do better before much longer, that could change.

Although Coca-Cola, Inc.'s stock has done much better, strategically, Coke is by some accounts far more dependent on pushing sugary beverages than is Pepsico.  About 60% of Coke's revenue in the U.S. is derived from carbonated soft drinks, compared with about a quarter at Pepsico.  Coke went from a diversification period in the 1980s, as the former owner of Columbia Pictures (it was then sold to Sony) to its current position back in the 1990s.  Shareholders seem to feel Coca-Cola has a better focus on beverages, and have rewarded the stock, but I wonder if Wall Street is being short-sighted, as always?

For example, in my opinion, Coke has all but pretended the issue of it's role in obesity really did not exist until recently, and Wall Street hasn't really cared.  However, last week, Coca-Cola launched a high-profile, feel-good campaign about obesity for the first-time.  I suspect it's in response to campaigns in many areas which seek to restrict their ability to sell their sugary beverages without restrictions, such as the limits placed on beverage sizes which recently went into effect in the nation's largest city, New York City.

Pepsi faces a similar challenge, but it's stock has less room to drop because it's not as inflated to begin with IMHO.  In fact, a big chunk of Pepsi's profits come from its massive Frito-Lay snack-food business (which many argue plays as much of a role in obesity as its core soft drinks business), which is facing different challenges.  Notably, the big mass market is shrinking.  Lower-income consumers are moving away from Frito Lay brands to store brands, while higher-end consumers are migrating to products from startups such as Pop Chips and Stacey's.  (For more background, see "Frito-Lay Takes New Tack on Snacks" by Stephanie Strom, The New York Times, Jun 12, 2012, http://nyti.ms/KrhCjP).

Ms. Nooyi has tried to fix the company's strategy from within.  At Pepsi's Frito Lay unit, the company has pushed new options such as different varieties of Baked Lays Potato Chips, Sun Chips, etc.  it's unclear how many buyers those products are luring, but they are being distributed by Pepsico with increasing frequency.  In the core beverage business, on December 17, 2012, news leaked (see http://huff.to/13FBZiy) that Pepsico Inc. was quietly changing the sweeteners used in Diet Pepsi, with the goal of helping the soda maintain its flavor longer.

Previously, Diet Pepsi used only aspartame, which is sensitive to heat and breaks down more easily.  Many people find that older cans of Diet Pepsi taste awful because the sweetener has broken down and is no longer sweet.  Cans of Diet Pepsi around the country are now listing a mix of two artificial sweeteners, a pairing that is commonly found in newer diet sodas, most notably in Coca-Cola's "Zero" versions of it's regular soft drinks (Coke Zero, Sprite Zero, Mello Yellow Zero, etc.).  Companies like Pepsi have learned to be sensitive to public perceptions that they might be tinkering with major brands after the New Coke debacle in the 1980s.  But the new sweetener mix will also mean that Diet Pepsi tastes slightly sweeter than it did previously.  The company says the switch is only intended to help prevent the taste from degrading over time, but will soon be promoting it as having enhanced flavor.

Coke Finally Responds To Obesity ... Sort Of

In any event, Coca-Cola recently took the weight concerns to a new level with a new 2-minute anti-obesity ad that looks more like a public service announcement than a commercial.  That commercial can be seen below, or by visiting http://youtu.be/zybnaPqzJ6s:



Clearly, its a professionally-produced spot, and tries to acknowledge the obesity problem, but it doesn't really address Coca-Cola's role in creating the obesity problem, only how it has responded with new choices.  The L.A. Times reported (see http://lat.ms/V6oAwb) that the new "... ad points out that the company's portfolio of more than 650 beverages includes more than 180 low- or no-calorie drinks. Most of the full-calorie drinks also have healthful versions, according to the spot."

The original idea behind Coca-Cola's Zero brands was as an alternative to diet brands like Diet Coke or Diet Sprite because the Zero brands supposedly tasted more like the original, sugar-sweetened versions of the same brands.  They were initially pitched at young men who might perceive diet beverages to somehow be unmasculine.

The new Coca-Cola ads have gotten a lot of attention, but I was curious if they will really mean anything?  NPR's "The Takeaway" program recently discussed the Coca-Cola move.  They speak with Cindy Gallop, who's an advertising consultant who focuses on brand reinvention, business game-changing, and transformative business practices.  She supposedly has been watching the new Coca-Cola campaign closely.  The program is worth a listen, which can be listened to below, or by visiting http://bit.ly/VLilA3:


Its still a bit too  early to reach any conclusions on which company's strategy has a more likely chance of success, and even while I'm personally a Diet Coke fan myself (although I've been known to consume Diet Dr. Pepper which is sold by a rival company), I think Pepsi's longer-term strategy is more likely to have long-lasting success.  Pepsico's is less of a PR move, and more fundamentally changing what the company sells to consumers.  However, whether the moves come fast enough for Wall Street's impatient shareholders remains to be seen.

What do my peers in the diabetes online community think?

Seasons Greetings 2012

OK, so this Christmas, I'm probably breaking all kinds of unspoken rules of blogging etiquette.  

Why?

Because this year went by so darn quickly and I really can't believe it's already the end of the year and it’s another Christmas already!

In the past, I've treated some of my holiday posts (when I did them) with humor, such as showing some clips from parodies of well-known holiday specials or my efforts to re-write some classic Christmas carols (see my posts HERE, HERE, and HERE for some ghosts of Christmas past here on Scott’s Web Log), but this year, I'm more in the mood for some, shall I say, inappropriate humor along the lines of Family Guy, South Park, or Brickleberry (which is in some ways worse than South Park if that's possible, if you haven’t seen it, set your DVRs).

Ninjabetic as Mr. Hankey (HIS work, not mine)

A few years ago my friend George "Ninjabetic" Simmons posted a photo of himself on Facebook as Mr. Hankey The Christmas Poo from “South Park”.  Needless to say, I grabbed a copy and saved it (beware, if you post a photo online, it may NEVER disappear!), but its really meant to go along with one of the Christmas albums I downloaded on my iPod recently.  I'll be going to my parents' house in Connecticut for Christmas, and they live less than 10 miles from the Sandy Hook Elementary School where the senseless shootings of little kids and teachers took place a few weeks ago.  Newtown was, IMHO, one of the most boring towns on earth.  Sure, it has great schools and it’s quaint, but there’s not much aside from the Edmond Town Hall Theater which shows second-run movies, to do there.  You pretty much have to trek to Danbury for any shopping, or entertainment.  Then again, that seems to be a pattern among places known for such incidents … no one ever expects such things to happen in places like that.

My cousin Barbara taught in Newtown Public Schools when I was growing up, and my cousins Bill and Jennifer both graduated from Newtown High School.  Anyway, I have a hard time getting those events out of my mind because the victims are the same age as my youngest niece which is incredibly sad.  I don't understand why the mother of the killer had an assault weapon in her home anyway, but I guess she paid the ultimate price for her "hobby".

Anyway, I'm probably depressing people and I don't want to do that, so rude holiday humor will come to the rescue!

This is supposed to be a holiday post, so I'm sharing George's elegant holiday photo as well as the song from the South Park Christmas album which I downloaded.  It made me laugh, so that was enough reason to share it.  Catch a video with the music (which I downloaded) along with some lyrics and miscellaneous related photos from that by visiting http://youtu.be/w9mXJ_KlQq8, or you may have a listen to the MP3 right on my blog (see below):



And here are the raunchy lyrics to brighten your Christmas!
http://www.stlyrics.com/songs/s/southpark9849/mrhankeythechristmaspoo323618.html

I hope this post puts a smile on your face and also serves as a reminder to cherish every day with your loved ones.  Seasons greetings to all of my peers in the diabetes online community and best wishes for a happy and healthy 2013!


Sincerely,
Scott Strumello

Why Not Bluewashing the World in November is Better Than Pinkwashing the World for Breast Cancer in October

October was Breast Cancer Awareness month, and (at least in the U.S. and Canada), this year, true to form, our world was awash in a sea of pink.  As some fellow diabetes bloggers have written, including my friend Kelly Kunik of Diabetesaliciousness and someone else I have great respect for, Alex O'Meara, the author of "Chasing Medical Miracles: The Promise and Perils and Clinical Trials" and fellow Type 1 himself (at least before his islet transplant, see his article HERE), painting the world pink to "raise awareness" of breast cancer is not necessarily the path we should even WANT to follow for diabetes research.

In fact, I would dare say that's probably something diabetes should avoid.

First of all, as Alex rightly noted, pinkwashing means that money is diverted from other diseases, many of which are arguably more serious (killing more people, causing more pain and destruction, with less effective treatments).  Diabetes (both type 1 and type 2) certainly fit that description.

In fact, according to data from the U.S. National Institutes of Health (see HERE), the U.S. spent $3,721 per patient (or $18,952 per actual patient death) on breast cancer research, while simultaneously spending a measly $42 per patient on diabetes (or $14,164 per patient death, although I should note that relatively few actual deaths are attributed to diabetes specifically).  In fact, heart disease is the number 1 killer of people with diabetes, even though diabetes may very well have contributed towards those deaths).  These stats were aggregated by the FAIR Foundation [http://www.fairfoundation.org/].

As K2 aptly points out, pinkwashing makes us feel like the eccentric cosmetics company owner Bebe Gallini who hired Mike Brady's (of "The Brady Bunch") architechtural firm to design a new factory for her, she even said "Darling ... with Bebe, you have complete freedom, you can design my factory however you like ... as long as it's pink!"

But beyond diverting money from other noteworthy causes to breast cancer activism (not necessarily breast cancer RESEARCH), there is also a HUGE degree of diversion away from the more important issues on breast cancer.  The idea of slapping a pink ribbon on everything from dish soap, to nail polish to pink buckets of chicken at KFC (heck, Huffington Post reports that someone has even bred a pink pumpkin, see http://huff.to/P58jbP for details), also means that the actual, original meaning behind the color pink has been badly diluted.

I, for one, don't think that defines a "successful" public relations campaign.

Some Canadian filmmakers produced a compelling movie on this subject which aired on different stations operated by MTV Networks.

Have a look at the trailer for that movie below or at http://youtu.be/3QPZfcYTUaA:



This isn't meant to disrespect the breast cancer activists; I lost my maternal grandmother to breast cancer in the late 1970s, and my own mother was treated successfully for breast cancer a few years ago.

However, I do think the critique of breast cancer as a cause being hijacked by corporate interests is worthy of mention, and I also believe that we really should be standing with the FAIR Foundation [http://www.fairfoundation.org/] for more equitable distribution of the research paid for with our tax dollars.

My comment on Alex's post was that I would hope that diabetes as a cause could avoid the mistake that has become pinkwashing, hopefully to ensure that not only does diabetes receive it's fare share of funding (which it doesn't today), but also that we don't let our diseases (diabetes not a single disease, much like cancer is not a single disease) be used for crass commercial interests.  But, as the movie I wrote about above notes, these days, advocates for breast cancer are fighting to take control over how pink is used.  To them, all I can say is "Good luck with that" because once the genie has been let out of the bottle, its no small task to change course.

For these reasons, I'm actually kind of pleased to say that the world has not yet been bluewashed during the month of November to address World Diabetes Day.  In part, that's because the International Diabetes Federation refuses to let anyone do almost anything with the blue circle, which frankly, has impeded widespread adoption of it's use.  That's not a good thing.  But, just maybe people with diabetes can avoid some of the pitfalls that have become lost in a sea of pink associated with Breast Cancer Awareness Month during the month of October.

To be sure, there are serious re-prioritization issues as far as how our tax dollars fund research.  Breast cancer and AIDS both get far more than those diseases are entitled to based on the number of people impacted and/or deaths caused by those diseases, while other diseases get screwed out of money that could provide some much needed help.  Patients arguably should make more noise about it, and there are tactics used by both AIDS activists and Breast Cancer activists we could use to get more justifiable attention and money.  But, just maybe, we can learn from their mistakes, too!

Walmart Distributing Nipro's Ancillary Diabetes Care Products, But Prices Should Be Lower

Two years ago (on June 9, 2010), when Home Diagnostics, Inc. was acquired by Nipro Diabetes Systems, Inc., (which is headquartered in Osaka, Japan), I didn't give the move too much thought.

Nipro used to sell an insulin pump known as the Amigo pump here in the U.S., but I believe that was discontinued a few years ago, although I believe the company may be planning to re-enter that space in the future.  Users felt it was a very high-quality pump, but the product was never a top seller in the U.S. market, unlike in it's native market Japan.  To some extent, Nipro and South Korean rival Dana Diabecare (Sooil) have a bit of a disadvantage working with sales forces that are often much smaller than big rivals Medtronic Minimed, Johnson & Johnson Animas, Roche/Disetronic (soon to include patch-pump Medingo Solo, see HERE), and even startup Insulet Omnipod.  Both Nipro and Sooil have a bit of disadvantage in recruiting sales people here, because the bigger rivals find it much easier to lure sales people, many of whom are expected to use the products themselves since that enables them to speak on the virtues of a given product with knowledge only a user can realistically talk about.

Home Diagnostics was a Ft. Lauderdale, Florida-based company known for making low-priced blood glucose meters, often under the pharmacies' brand names.  However, when the company announced last month (on October 10, 2012) that it would begin to ship to major retailers and wholesale distributors a new portfolio of more than 30 "ancillary products" (see the Press Release HERE) for individuals with diabetes, I thought that could be an interesting development since they seemed to be aiming at the private-label market.  What kind of products was Nipro talking about?  Well, the press release notes: "The TRUEplus™" line includes fast-acting glucose tablets, shots and gels; ketone strips; diabetic multivitamins; syringes, lancets and lancing devices."

Flurry of Innovation for Consumers, But Prices Should Be Lower Given The Competition

Making these things isn’t exactly rocket science and there are many subcontractors they can use, but the market had dominated by CanAm Care (CanAm was acquired by Perrigo in January 2012, see HERE for details), although in recent years we've seen a number of upstarts including Jungell, Inc.'s GlucoLift product, a 100% organic, non-GMO product which is sold primarily online at retailers like Amazon.com.  It should be noted that the owner Chris Angell is person with type 1 diabetes himself.  Others include Raritan Phamaceuticals which I first reported on it back in 2006 see HERE, as well as innovators such as Meals to Live which introduced (see the Press Release HERE) Glucose Quick Sticks last year, whose product is kind of like giant Pixie Stix (each contains 10 grams of dextrose) which is arguably more convenient than destroying one’s molars chewing traditional tablets.  To the best of my knowledge, the product, which now sells at supermarket chains like Kroger as well as Walmart, is their sole business these days and the company may even have changed its name.

The other benefit those provide is that they are lighter to carry around than liquid which weighs a lot.  Others, such as PBM Products, Inc. which marketed GlucoBurst gels and tablets (although the company had an even bigger private label infant formula business), were also acquired by Perrigo (primarily to own the infant formula business), hence they are now part of a large pharmaceutical entity and I would guess has pretty much been folded into Perrigo's CanAm Care business.  Without digressing too far off topic, at the time of Nipro's ancillary diabetes product announcement, I didn't see any of their products on store shelves, so I pretty much forgot about the announcement and went back to  my own daily life.

Landing Walmart’s Business; Consumer Prices Should Be Lower

When I went to my parents' over Thanksgiving weekend, I went out on Black Friday and one of the many retailers I visited was Walmart in spite of my better judgement (see HERE) because I was with people who wanted to go there.  In truth, I didn't see anything that interested me for holiday gifts at Walmart, but while there, I did make a point of restocking my supply with their less-costly glucose tablets in Tropical Fruit flavor (which, by the way, are no longer made by Raritan Pharmaceuticals as I noted in my post above, but now made exclusively by Perrigo's CanAm Care unit -- for the moment, anyway).  I may have hinted that Raritan's glucose tabs at Walmart was history last year, see my post HERE for details, but it was merely speculation at that time.

Perrigo's CanAm Care unit was best known for making Dex4 products, which are more often sold under retailer's brand-names.  Private label manufacture has become very lucrative for many companies as store-brands now rival traditional brands in quality, and store brands gained sales when the economy slowed (even consumer products giant P&G hasn't weathered the latest recession as well as the company did in the past, see HERE for more background).  While this is good for retailers' bottom lines, the benefits of price competition for these contracts seldom seems to trickle down to retail consumer prices.  However, some retailers do sell at better prices, including Costco Wholesale (whose pharmacy, incidentally, is barred by Federal law from requiring a membership to shop there), even if their selection is quite limited.  Some makers of these products, including Perrigo's CanAm Care, have quietly started selling their directly to consumers, often for lower prices than can be obtained from even large retailers like Walmart or Costco, which I expect to see more of in the future.

In any event, during my trip to Walmart I also planned to restock on Liquid Glucose shots since I really HATE chewing on chalky tablets if I can avoid it.  For me, juice boxes are just too damn slow and I find the taste of orange juice particularly disgusting, although I will drink apple juice.  Anyway, while at Walmart, I saw a few of the traditional Relion Liquid Blast bottles on the shelf, but I also saw that those had largely been replaced (restocked) by bottles the resembled those caffeine shots that are endorsed by everyone from football players to Joan Rivers these days.

I grabbed a few without giving it too analysis thinking that maybe it was a new bottle was requested by the retailer, but when I got in the car, I looked at the label more closely, and it was clear: "Distributed by Nipro Diagnostics, Inc., Ft; Lauderdale, FL 33309".

To be sure, the bottles contained the same 2 ounces, but Walmart was now selling them in Pomegranate  Orange and Lemon-Lime flavors, and I was pretty sure CanAm had discontinued Lemon-Lime flavor a while back, something I was kind of sorry to see disappear.

Evidently, Nipro was willing to sell their own liquid glucose shots to Walmart for less, so the company dumped CanAm's Liquid Blast product faster than a hot potato as the saying goes.  I wouldn't say that's final at this point, however, since Perrigo could potentially cut Walmart a better deal on the product, but for the moment, Nipro is the supplier of choice (at least for the Relion liquid glucose products).  The price, however, was exactly the same, and it really should have been much lower, with the proceeds going directly to Walmart’s bottom line.  Will Walmart start selling Nipro's glucose tablets, too?  I wouldn't put past Walmart to do it, but I will say that sales by SKU will be a key factor.  Consumer prices are NOT likely to be any lower since Walmart claims to be the low-price leader.

After Walmart dumped Raritan's glucose tablets a few years ago, they replaced them with CanAm's yucky orange and grape flavors, and sales tanked on the product (and complaints to the store increased a lot), so Walmart retooled and brought back a much better product that was made by CanAm, but as of right now, Nipro is supplying the liquid glucose products for Walmart.  I haven't yet seen Nipro's tablet flavors on the shelves yet, but I suspect they too use the New Hampshire manufacturer known as P.J. Noyes Company I wrote about (see my post HERE) and the flavors are determined by the client, in this case Nipro.

I would say there's a fair chance that Nipro may also penetrate other retailers in the not-too-distant future, as most will respond to aggressive prices and Nipro already sells inexpensive testing supplies to many of them today.  Walmart may be the largest retailer, but could we see CVS, Walgreens, Rite Aid, Target and others pick up Nipro's products?  I suspect the answer could potentially be yes.  We’ll see!

My First Sample of TRUEplus Glucose Shot

I sampled the Pomegranite flavor for the first time yesterday (apparently my SWAG insulin dosage for dinner wasn't very good).  Anyway, a few observations on the Liquid Glucose Shot from Nipro itself:  first, the flavor was only OK, but it was nothing terrific.  Compared to Dex4's Berry Burst flavor, I'd say it's not quite as good, but it was better than those nasty orange glucose tablets many pharmacies think people seem to like because they've been selling the same ones for the past 30 years.

I did find opening the bottle of Nipro's liquid Glucose Shot a bit easier than opening the bottle of CanAm's Liquid Blast.  That was good.

The perforation on the plastic-wrap surrounding the mouth of the bottle came off pretty easily, and I was very pleasantly surprised to find that there was absolutely no inner seal on the bottle.  Once the cap is off, you can drink it.  That's a big +1 in favor of Nipro's product, because the CanAm product has a difficult-to-open seal underneath all of that plastic.

On the minus side, the mouth of the bottle is very narrow, so unlike Dex4 Liquid Blast, it's much tougher to down the entire bottle like one would a tequila (or other liquor) shot at a bar.  No one is drinking these things to savor the flavor folks, but that doesn't mean we're willing to consume glucose treatments that taste like $#!t, either.

I'm happier with the Lemon-Lime flavor which I thought wasn't supposed to taste like Kool-Aid.  I haven't tried the Orange flavor yet ... my experience with orange tablets are not good, so I've resisted using that one until I have no other choice -- maybe I'll be pleasantly surprised.  I'd like to see a Piña Colada or pineapple flavor, and less of this exotic bitter fruit like pomegranate, but someone thinks they're being trendy and creative.

Winning Walmart Was A Coup for Nipro, But the Win Could Be Short-Lived

By the way, the Press Release said the primary point of contact at Nipro Diagnostics, Inc. is the Vice President of Marketing, a woman named Lisa Nardi, telephone 800-342-7226, ext. 2183, email: lnardi@niprodiagnostics.com.  I found CanAm's marketing folks were more than willing to listen to my complaints about not being able to open their Ft. Knox-styled wrapping on their bottles that are difficult to open with shaking hands caused by hypos (I even cited Brett Michaels' quote about them!), so it might be worth talking to Nipro about flavors you might like to see.

To be sure, Nipro's product line is decent, but Walmart isn't doing anyone any favors on prices -- they should be lower considering the deal they got from Nipro.

The reality is their prices really should be lower, and they've kept them the same.  When you buy these products, I would ask you to think about the underlying economics.  Chris Angell's GlucoLift tablets will be winning my future tablet business, although I'd like to see them introduce powdered and liquid vareities.  After all, I don’t want dentures in my old age!

There's no telling how responsive Nipro will be to having a dialogue with the diabetes online community, but at least you have a contact name!  I'm thinking of creating a poll below on what flavors the collective diabetes online community would like to see, both in liquid glucose drinks, and also old-fashioned glucose tablets, and also asking about the prices of these products.  What do you think?

The bottom line is that Walmart got lower prices from Nipro which should be a good thing for consumers, but the only one’s celebrating are Walmart's shareholders.  I think Robert Reich makes a very compelling point (see HERE), and we all should be asking the same questions.

WDD Gripe: The Blue Circle

In the seven years I've been blogging here at Scott's Web Log, I have occasionally written about World Diabetes Day, and my first post in 2005 (in the early days) wasn't exactly the kind the media was anticipating -- instead, I gave them a royal lashing (see my post from 2005 HERE)!  I know it's World Diabetes Day and I'm SUPPOSED to be the super-advocate singing the praises of living a full, wonderful life in spite of having autoimmune type 1 diabetes, but to me, this day has never been something I thought was a good thing.  People hear about it and read about it for 1 day, and forget about it for the other 364 days of the year.

To begin with, let's talk about the International Diabetes Federation's "blue circle".  The organization has so many freakin' restrictions on it's use (see their guidelines at http://www.idf.org/sites/default/files/Blue-circle-usage-guidelines.pdf for all the things we can and cannot do with the blue circle).  No offense, IDF, but if you want this to become as widespread as pink ribbons, loosen up ... A LOT!!  They note "The International Diabetes Federation (IDF) holds all rights to the blue circle for diabetes. The symbol may not be used without prior permission by IDF."

There are too many damn restrictions on what can and cannot be done with the blue circle, yet, not surprisingly, there are also exemptions.  Notably "The Official World Diabetes Day Partner logo is for exclusive use of corporate partners of the International Diabetes Federation."  Sure, pay us money and we'll give you lots of leeway on using the blue circle.

I'm going to take what may be a violation of the lengthy list of rules and restrictions, but I'm not a fan of the blue circle.  Correction: the symbol does NOT belong to the IDF, but to PEOPLE WITH DIABETES (although a court of law might disagree).  Don't freakin' tell me I can't use the circle a certain way, because that makes me less likely to use it all.  I'm just sayin ...

Beyond blue circles, while Dr. Banting's discovery has kept me alive for 35 more years than I would otherwise be around, to some extent, I think had insulin never been discovered the world would put a significantly higher priority on eradicating, preventing and curing diabetes.  Instead, it's been a big f'ing excuse to blame patients for noncompliance with a treatment protocol that is arguably a life sentence with no chance of parole.  Should I somehow be "celebrating" that?  I don't think so.  What's more, if people were dying from diabetes, don't you think society might do more to get rid of this disease?  My friend Deb Butterfield, back in the early part of the 2000's, eloquently wrote (see her article HERE):

"Our neighbors, coworkers, friends, and relatives learned that diabetes is controllable. The theme reinforced the belief that diabetic disabilities and their associated economic costs are caused by diabetics [or to be more politically correct, "people with diabetes"] - not by diabetes [the disease].

Now think for a moment what would happen if the campaign had announced, 'Diabetes disables and kills. Only a cure can stop the suffering,' with pictures of a little boy leading his blind mother around a grocery store and a voice-over explaining that diabetes is suffering. This campaign would create a fundamental shift in the way diabetes is perceived. The public would see diabetes as the enemy, as we see cancer and AIDS as enemies. They would worry that if it isn't cured, it could happen to them, or to their children. A 'Diabetes Disables and Kills' campaign could change the face of the disease by removing the smile that has so long been attached to it in product advertising and brochures in doctors' offices and pharmacies. Perhaps public outrage that there is no cure yet would create political pressure to increase funding for cure-focused diabetes research."

I, for one, after 35 years of living with type 1 diabetes, am dam sick of others telling me how I'm supposed to think about diabetes.  Let me be very clear: it's my disease and I can think about it whatever way I choose, and the blue circle belongs to patients with diabetes not the IDF.  I'm entitled to feel as if our disease gets fewer research dollars than less-prevalent diseases do because it does -- society doesn't think a diabetes cure is a priority.  If you don't believe me, please visit the FAIR Foundation at http://www.fairfoundation.org/ to learn more.

As a point of reference, in 2013, the NIH will allocate $419 (dollars in millions and rounded) to diabetes compared to $543 (dollars in millions and rounded) for urologic diseases.  I'm sure urologic diseases suck beyond belief for those who have them, but when we see stats that as much as 30% of Americans will have diabetes by 2030, I think a serious reprioritization is in order.

Sorry to be so cranky about this, but World Diabetes Day isn't really a day we should be celebrating, its a day we should be asking these questions!

D-Blog Day: Our Offer Is Still Open!!

My friend Gina Capone (who's now a mother ..  many congratulations to Gina and her husband!!) started this quite a few years ago, and we're fortunate that it endures even today.  It's D-Blog Day.  The 2012 theme is confronting the mainstream media; we're encouraged to write an open letter to any print, broadcast or online media outlet about handling diabetes — why it's important for them to cover it, what have they gotten right or wrong, and what the reporters and editors need to know when relating diabetes topics to the general public. The link to all of the D-Blog Day posts can be found at: http://diabetestalkfest.com/blog/?p=507, and the Twitter hastag is: #dblogday.

Oh, and before I forget, its worth sharing some fantabulous news ... the FDA has finally done it!  There's now some formal guidance on the artificial pancreas!!  Have a look at: http://1.usa.gov/S5mFnW for details.

Moving on ...

Our Offer Is Still Open

I'm blogging at Scott's Web Log, the first time in a while (I've still been busy with my other blog, which is known as "Havest Gold Memories" [http://hgm.sstrumello.com], but that's an unrelated topic) for D-Blog Day.

While I could write a letter to a particular media outlet, this will be an open letter to the editors and story writers behind television and radio news.  Today, am reiterating an offer a fair number we, as Diabetes Advocates [http://diabetesadvocates.org/], did earlier this year with a press release.  That release can be viewed at: http://bit.se/KVcmqH:

As you probably already know, November is National Diabetes Awareness Month in the U.S. and has been recognized as such since 1975. It began getting Congressional and Presidential acknowledgment for almost as long. November 14 also marks World Diabetes Day, which became widely-recognized in 2006 when the U.N. passed a resolution acknowledging diabetes worldwide.

The reason I'm bringing all of this up today is because our offer to you has not expired, it remains open and I would again encourage you to take us up on the offer!

The media, by and large, does a REALLY poor job reporting when it comes to diabetes (which, to our reporter friends, is NOT a single disease, a critical fact a majority of articles fail to acknowledge).  Let me add that merely going to a doctor (often any doctor who will take your calls while you're rushing on a deadline), especially one who might be a general practitioner, is probably not sufficient research.  After all, there are dentists who happen to be M.D.'s, so don't make the mistake of presuming those "M.D." letters after their names automatically qualifies them to comment on your article or answer your questions.  Also, many doctors have not had CME (continuing medical education) credits on diabetes in years, and even if they have, it may only be on a single aspect of one form of diabetes, sometimes paid for by the drug company hoping to sell more of their products.

Instead, ask what you DON'T know, chances are there's a whole LOT you don't know!

Don't presume you have a good story rushing to meet a publishing deadline, instead take a step back and do what great reporters have always done: investigative journalism.  Use that to learn about the topic you're writing about and your stories may blow anything your rivals do away.  You might enjoy your work more if you do!

One resource you have available to you is US ... as patients with diabetes who can offer far more insightful perspective than some busy M.D. you pestered into taking your relentless calls as a favor.

Please have another look at our press release, which pretty much says it all:

Diabetes Advocates Offer Assistance in Accurate Reporting in the Media
March 27, 2012

"We want to help get it right," states diabetes advocacy group

Tuesday, March 27, 2012 (BERKELEY, CA) – Did you know there are more than five different types of diabetes? If your knowledge of diabetes is defined by what you hear and see on the news or in movies then you probably don't.  Diabetes Advocates, a nonprofit program made up of influential members of the diabetes community has launched a media outreach campaign, designed to assist the media on all things diabetes.  

Kelly Kunik, a member of Diabetes Advocates, stated: "Today is Diabetes Alert Day in the US and we are trying to stress to all media sources that more due diligence is required on everyone’s part when reporting on diabetes. We want to help all sources 'get it right' but also stress the importance of explaining the differences among 'all things' diabetes."

Despite the fact that media outlets are reporting on diabetes more than ever, the condition is still widely misrepresented and portrayed as only one disease, when in actuality, diabetes is made up of several different diseases (type 1, type 1.5 LADA, and type 2 being the most predominantly confused). By emailing the organization at media@diabetesadvocates.org, reporters can quickly fact check, get suggestions and have a real-time conversation with the Diabetes Advocates to ensure the accuracy of their articles. The Diabetes Advocates can also serve as sources for reporters.

With representation from the Screen Actors Guild (SAG), American Federation of Television and Radio Artists (AFTRA) and Actor's Equity (AEA) within the organization, the Diabetes Advocates can also serve as information sources to entertainment outlets. Entertainment outlets looking for information on diabetes can email the group as well.

"Our goal is to stop being reactive and start being proactive," said Kunik. "When a story with incorrect information is published, the damage is done. By making ourselves available to media and entertainment outlets, we are seeking to be part of a solution."

ABOUT DIABETES ADVOCATES

Diabetes Advocates is a not-for-profit program run by the Diabetes Hands Foundation. The program combines the resources of its members to do activities to better educate the public about all aspects concerning diabetes. For more details, visit: www.diabetesadvocates.org.

# # # # #

Contact:
media@diabetesadvocates.org

No D-Day: A Few Things About Myself

I don't often talk about myself of my family life, in part, because it's mine and just because I'm a blogger doesn't mean I have any obligations to talk about people who don't necessarily want to be featured in my blog.  People who know me also know that my older sister has T1D (note the word I did NOT use here) and she had it since they year I was born and we both dealt with that growing up in the '70s.  She taught me everything I wasn't supposed to know about how to fake out a Clintest with an extra drop or two of water.  But in keeping with today's theme, I'll avoid talking about anything that might be d-related.  I also have a younger brother who was the bane of my existence growing up.  If you ever read Judy's Blume's "Tales of a Fourth Grade Nothing" (catch a post on my other blog on that HERE), that pretty much was the story of my life growing up.  Today, we get along much better than we did sharing a room when I grew up (my sister being the only girl got her own room, buy the two boys had to share a room).

But I do have a family and I had a great childhood growing up.  I grew up in a typically boring town in Connecticut in the New York City exurbs.  We had a Metro North Commuter Railroad station into the city, but there wasn't much else going on in town by my recollections.  Like all of New England, counties are largely irrelevant because individual towns have their own governments, school districts, police and fire safety (see HERE).  The neighboring town could be a half block down the street, but those kids would go to a different school district and they'd have their own town's recreation programs unless it was a sports event and we were competing against them.

I grew up in what has been called by some the lamest decade in history: namely the 1970s, although I graduated from high school in the mid-to-late 1980s.  I didn't think the seventies was lame back then and in hindsight, I got to experience some things that make my generation among the last to have some shared, collective experiences that kids today will never experience.

Dick and Jane: Yes, I Learned With Them!

When I learned to read, I was taught on the long-since-abandoned "Dick and Jane" readers. Those were published until the mid-1970s, but many schools abandoned them for a variety of reasons.  Those readers were actually abandoned by my school district the year AFTER I was taught to read.  Maybe that makes me old, but I like to think of it as making me the last of a dying breed of grade school students!  That was supplemented by a teaching of Phonics, and I remember my first grade teacher having some stories she told about each of the vowels, although now that 35 years have passed, my recollections of those stories have really faded.  But I remember I thought it was fun at the time.

For the record, I was actually an advanced reader for my age.  Truthfully, I don't think "Dick and Jane" had much to do with that, nor did Sesame Street since I was already in school when that became de rigeur for children't television.  I did, however, watch a program known as "The Electric Company" that was another PBS children's educational program at the time (yes, Seasons 1 and 2 are now available on DVD in case anyone is interested) for kids who were too old for "Sesame Street".  Hence, as a child, I was introduced at a very young age to such entertainment icons as Bill Cosby, Rita Moreno, Gene Wilder, Morgan Freeman and even Joan Rivers who was the narrator for what was perhaps my favorite segment on "The Electric Company" called "The Adventures of Letter Man".

Religion: Who Says Your Understanding of God Is Right or Even The Only One?

I also grew up with some semblance of religion, and even went to Sunday School and was confirmed around age 13 or 14.  I was also a choir boy, hence my adoration of the TV show "Glee" even if the writing for it has been inconsistent.  But I think religion in the United States has taken on a different meaning than it once did and I kind of consider myself agnostic.  I stop short of calling myself atheist, but I don't believe much of organized religion's perspective on a devine being sometimes called God, and I find organized religion to be an abberation.  Also, I find that some Eastern religions are often more in-sync with my own perspective of what a divine being might expect of humanity.  Frankly, I think significantly more than half the world's people cannot just be casually dismissed on religion just because they don't follow Western thinking on the subject.

I also find the notion of prosthyletizing to be a gross manifestation of Biblical writings and are contrary to the Second Amendment of the U.S. Constitution.  However, I stop short of saying people should avoid it completely.  Much comes down to how it is delivered.  For example, some people feel inspired to share something that has brought them tremendous happiness and a sense of well-being.  Are they wrong for doing so?  I don't necessarily think so, but as I said, it comes down to how they share it.  Different religions differ considerably on this, too, with some promoting a very in-your-face notion of sharing the good word with others, while others basically try to keep their faith to themselves, not even encouraging others to join.  However, as a general rule, I find Evangelical Christian prosthylitizing completely offensive and is against everything the U.S. founding fathers stood for in terms of freedoms.  I fail to understand why some people will defend the Second Amendment, but conveniently choose ignore the First Amendment.  WTF?

I can tell some people are getting all hot and bothered now, so I won't ramble on anymore, and maybe I've shared too much already ... we'll see.  Anyway, those are 2 things about myself in case anyone was wondering.

A Tribute to Jennifer Jaff

File this one under the category of "Wow, I can't believe it!".

Last Wednesday (September 19, 2012), via Twitter, I learned that a person I'd never met personally yet felt a shared mission with, passed away at age 55.  That person was a woman named Jennifer C. Jaff.

Jennifer Jaff

Ms. Jaff was an attorney by training (indeed, she attended Georgetown Law School) and she worked as an assistant for the Connecticut Attorney General, and later, as a partner with a Hartford law firm.  She was prepared to become a trial lawyer, and perhaps ultimately a judge, but those plans were unexpectedly interrupted by the autoimmune disease known as Crohn's Disease.  Crohn's Disease shares several important traits with type 1 diabetes: notably that it's an autoimmune disease that's also chronic.  It's one of two autoimmune Inflammatory Bowel Diseases (a.k.a. "IBD"), the other is ulcerative colitis.  I can understand the issues they deal with, as my mother lived with Ulcerative Colitis when I was growing up (she ultimately had a 2-part surgical procedure known as J Pouch (or ileal pouch reconstruction) surgery that removed her entire large intestine, which instead of having to live with a permanent ostomy bag, the surgery addresses that.  Today, my mother lives pretty much symptom-free, but not without major surgery that took place in 2 steps and a period of several month recovery from each step.  Anyway, Crohn's differs in that instead of impacting the large intestine only, it impacts both the large and small intestine.  The awful symptoms are similar for both (and can include fecal incontinence, so next time you complain about injections and finger sticks, consider life with those symptoms, and does put type 1 diabetes in perspective (catch some DiabetesMine coverage on IBD from early this year HERE)

Yet in a video that's available online, Jennifer summed the situation up in pretty blunt yet accurate terms.  Chronic diseases of all types usually end up one of two ways: either the disease goes away (into remission) or it ultimately kills you.  Have a look at the video below, or by visiting http://vimeo.com/10074776:



In the diabetes community, we like to believe that if we just follow the rules of diabetes treatment, we are guaranteed a life free of diabetic complications. Not only do we want to believe that; we have been taught to believe that, but the reality is that great glycemic "control" offers NO guarantees, it merely improves our odds of avoiding some of the so-called diabetes complications.

No doubt, some of Ms. Jaff's gastroenterologists told her similar things about Crohn's Disease, but last week, she passed away suddenly from complications of Crohn's Disease.  Now, before I get too far off track, there's a part of the story, unless you followed her on social media, you might not be aware of.  In 2005, Jennifer was forced to leave her law practice job with a law firm because she needed to be able to dash off to a restroom suddenly thanks to Crohn's Disease.  I think we can conclude that really sucked.

But instead of treating that as a devastating loss, she found new vitality in the online community.  She started a nonprofit organization that's known as Advocacy for Patients With Chronic Diseases, Inc. [http://advocacyforpatients.org/] (on Twitter, the organization's handle is @Adv4Pats) and on Facebook, it can be found at http://www.facebook.com/advocacyforpatients.  She blogged at http://advocacyforpatients.blogspot.com/ and her nonprofit organization drew a large following from around the country.  In particular, she had very strong opinions on the Patient Protection and Affordable Care Act, with the belief that that legislation was a civil rights issue for people with chronic illnesses.  In an interview with the Hartford Courant, she said "I live and breathe chronic-illness law, and in my estimation this is the most important civil rights advance for people with chronic illnesses ever. There can never be equality if we can't get health insurance."

The pretty much echos my sentiments on that issue, too!

I can remember reading her Monday morning blog posts and reading in amazement at her legal opinions and the excellent sources she cited for her opinions.  While I often postponed reading her Monday posts due to the in-depth nature of them, when I had time to read them, the insights were truly amazing.  Her organization also offered recommendations on insurance denials, which Jennifer believed was a business practice to, she argued, the providers do all they can to minimize coverage of chronic illness.

In the blog post (see HERE) announcing her death, the organization's President Carol Fain Walters wrote that any funeral arrangements would be private, but noted that the organization is planning a memorial gathering for Jennifer sometime in the next few months and they will be announcing the date, time and place once those details are finalized.  For people who care to donate gifts in her memory, they ask that those be sent through their website, or by mail to: Advocacy for Patients with Chronic Illness, Inc., 195 Farmington Avenue, Suite 306, Farmington, CT 06032.

I will just close with the memorable obituaries that were published for her in both the Hartford Courant (http://cour.at/PEAevz) and The New York Times (http://nyti.ms/Sic2Bu).

While Jennifer's shoes will be tough to fill, I think her contribution to all people with invisible, chronic illnesses has been tremendous and extends to those of us in the diabetes online community.  Her goal was to help people with chronic diseases when others wouldn't.

Just to end this depressing post on a slightly happier note, Jennifer found a strong voice with Mike McCready of Pearl Jam, who also lives with Crohn's Disease.  Catch the two of them at a 2010 Pearl Jam concert in Hartford, Connecticut below, or by visiting http://youtu.be/aORsrlWaf5c:

Recent D-OC Accomplishments

Today's post is intentionally short.  But I think there's some things the collective diabetes online community deserves appropriate credit for, hence I'm calling attention to these here.  Specifically, two items emerged in recent weeks which can be credited largely to the collective diabetes online community.

D-OC Collective Force for Good in Tragedy

The first item is really the result of a tragedy.  This wasn't a tragedy which was preventable, but one of our own members of this community, specifically Meri Schumacher [http://www.ourdiabeticlife.com/] lost her husband Ryan to cancer a few weeks ago (on September 2, 2012).

The Schumacher clan, for those who didn't know it, have several children with autoimmune type 1 diabetes, and Ryan's cancer diagnosis came as a shock last year. In the end, Ryan lost his battle with cancer, and the family now struggles to adjust to life without him.

They are not the first family to lose someone, and they won't be the last, but the point is that the collective community has suffered a loss, but has proven that we can collectively respond in a time of need. A fundraiser was established to help the family financially to pay for expenses related to Ryan's treatment. Initially, the dollar amount was $15,000, and that threshold was met and has since been raised to $25,000. Undoubtedly, the bills have yet to start coming in, but they will and may be even higher than that, so the adjustment is probably in order. To visit that page, you may visit http://www.giveforward.com/schuhmacherfamilymiracle2 to make a contribution.

I would just add that aside from expenses related to Ryan's care, that family's needs for day-to-day care haven't disappeared, and while the Patient Protection and Affordable Care Act (PPACA), sometimes derisively called Obamacare, will ensure those kids will have access to healthcare, with several kids who are pretty young and will undoubtedly have needs for higher education in the future.

Although I don't often talk extensively about my personal life, as a point of comparison, my mother lost her own father back in the early 1950s, and my late grandmother did something which, in those days, was unheard of: she went to work. That made my own mother, and my two uncles arguably among the first latch-key kids. Nowadays, dual-income households are more the rule rather than the exception, but in those days, the notion of a working woman was uncommon. Outside of nursing and secretarial positions, there weren't tons of opportunities for employment for women in those days, and the pay wasn't as great. But by the mid-1970s, women were doing it en-masse, the only difference is my grandmother did it 25 years earlier. However, I think the ability for us to pull together resources when they're needed was really demonstrated in this case, and for that, we as a community have demonstrated our ability to work together when needed, so we should be acknowledged accordingly.

Beyond that, I also want to acknowledge another item.

D-OC Helps Push Celeb Chef Sam Talbot Over The Top!

Some may have followed it, but chef Sam Talbot, whom I wrote about a few years ago [2007 to be exact, catch that post HERE] was competing in another competition (this one for sandwiches), which if he won, would benefit the Juvenile Diabetes Research Foundation to the tune of $10,000.

He (Sam Talbot)  was trailing in third place in the days before, and I had my doubts whether his competitors who were all supporting great and worthy causes, including, The Michael J. Fox Foundation as well as the Lustgarten Foundation for Pancreatic Cancer, might actually win this competition.  However, in the final few days, the votes for the celebrity chef hottie whom various d-bloggers including "Typical Type 1" Jacquie Paul Wojcik (now a proud mother to Magpie) have written about, and once the votes from from the D-OC rolled in, we pushed our favorite celeb chef over the top!

Chef Sam Talbot Tweeted (see HERE):

THANK YOU THANK YOU ! Yall took banding together to the next level. I can't believe in the final 24hrs we got 22,000 votes in 1 day!!! Wow!
— Sam Talbot (@ChefSamTalbot) September 8, 2012

Yes, we as a community have the numbers which, if I may be so bold, helped push him over the top!

Collectively, we pushed 22,000 votes in a single day, which is nothing to dismiss!

We didn't do it alone, and he had help from the JDRF among others to help push votes for the celebrity chef over the top. On the other hand, I will say that our collective presence in social media like Twitter is a force to be reckoned with and it's more than just "influencers" ... we are a genuine community with people impacted by this disease which is learning to utilize these tools for even more in the future.

I would be remiss if I didn't use this opportunity to note that many are members of Diabetes Advocates which helped make these things happen.  If you are a personal diabetes blogger and are interested in learning more, visit Diabetes Advocates' website for more information.

The Business of Diabetes: Might Medtronic Acquire Bayer's Glucose Meter Business?

In case my readers hadn't already seen or heard the news, Medtronic Minimed's "The Loop" blog (see HERE) posted news last night about a new blood glucose meter being called the Contour Next Link, which was co-developed by Medtronic and Bayer.  Medtronic has had some partnerships similar to this in the past, notably with industry market-share leader Johnson & Johnson's OneTouch product line.  But aside from being the best-selling meter around, J&J OneTouch has hardly been a design innovator.  Until the recent introduction of the OneTouch Verio IQ, which is supposed to recognize blood glucose patterns on behalf of the patient, their biggest innovation was designer colors for its meters (hot pink or neon green, anyone?).

The Contour Next Link looks remarkably similar to the Contour USB meter.  My readers may recall that several years ago, I switched to Bayer's Contour USB meter (see my post HERE), and I was so glad I did.  It made me realize just how lousy J&J's testing product line really was (I can't begin to recall how many tests were initiated before having a large enough blood sample, which pissed me off to no end, wasting my time and my insurance company's money for a seemingly simple issue to fix).  Add to that, J&J's unprecedented numbers of product recalls (none that I'm aware of for the meter business) during the past few years made me glad to have dumped OneTouch far-less-than-Ultra.  To be sure, the Bayer product wasn't perfect, but it was as good as J&J's was.  I'm in the process of using my remaining test strip inventory, and since Bayer Contour is no longer on formulary, I'll be switching brands, although I don't think I had much to do with the decision.  I'll address how I made a decision on which meter I'll be switching to in the future.

Without getting too far off-topic, Mike Hoskins at DiabetesMine covered most of the technical details on the Contour Next Link meter (see HERE) far better than I'm equipped to, such as how the Contour Next Link meter will communicate with Medtronic insulin pumps, so I won't reiterate that here.

Bayer Contour Next Link Meter

Reuters: Bayer Looking to Sell Glucose Meter Business

However, the underlying business story is a tad more interesting in my humble opinion, at least from a business perspective.

Back on May 9, 2012, I shared a very short Reuters news story via Twitter.  Reuters deletes content from the web quickly, although for the time-being, that story is still available online (see "Germany's Bayer considers diabetes device unit sale: report", Source: Reuters, May 9, 2012, http://reut.rs/TXohRo for details).  I'll save everyone the trouble by listing the entire contents to that micro-short story below:

"Bayer has held talks with prospective buyers of its Diabetes Care unit, which has annual sales of about 1 billion euros ($1.3 billion), Financial Times Deutschland said in its Wednesday [May 9, 2012] edition, citing sources close to the possible suitors and in the financial industry.

The paper said that Bayer declined to comment.

($1 = 0.7695 euros)

(Reporting by Ludwig Burger; Editing by Ed Lane)"

That's pretty much the entire news story, but the message is that Bayer is shopping around for buyers for its self monitoring of blood glucose testing business.

To be sure, nearly 4 months have passed since that story ran, but nothing further has come of it ... yet!

Café Pharma Speculation on Would-Be Acquirers

However, after that story ran, the industry insiders at Café Pharma (an industry message board) were, as one might guess, busy chatting about it.  One commenter noted they would not be surprised if Medtronic was among the list of potential buyers for that business (see http://goo.gl/KUM9q to read the postings), although others mentioned included Japan's Panasonic, which was rapidly dismissed by others on the message board.  However, the possibility of Medtronic entering the self-monitoring blood glucose ("SMBG" in FDA parlance) market is quite compelling from a business perspective.

To be sure, Bayer's product is OK and has some nice features, but like meter rivals Abbott and Sanofi, Bayer has struggled to get the product on insurance company formularies.  To do that often requires big discounts to land an account, hence the margins are very tight, and the contracts are often multi-year deals, meaning an insurance company procurement agent may sign for a supply arrangement for anywhere from 3 to 5 years in advance.  Continuity in the supply chain really doesn't mean very much when the impact to the bottom line can be billions of dollars!

The two dominant players are J&J and Roche's Accu-Chek, which both have coverage by something like 85% of all insurance plans.  Smaller players are forced to rely primarily on third-party distributors like CCS Medical which is a big supplier to Medicare patients to sell their products, as over-the-counter sales (for cash) represent a tiny (and declining) sliver of the overall market.

Presently, no acquisition moves have been formally announced by any company.

It is still conceivable that Bayer will examine potential offers and could still abandon the idea of a sale if it thinks the business has been under-valued.  But a possibility of Medtronic, which is a medical device conglomerate is very alluring.

It would fit well within the company's dominant insulin pump business, and having a meter that already "connects" to them is even more compelling.  A key question is likely to be whether Medtronic has any appetite for such an aquisition?  Not following the company closely, I really cannot say, but the price tag, even given Bayer's sales of $1.3 billion/year, could be relatively cheap, especially relative to what Medtronic paid for Minimed ($3.28 billion back in 2001), and it's no secret that the medical device giant has deep pockets.  Indeed, Medtronic's Diabetes Care business, even though it is the market share leader in insulin pumps, is still a comparatively small piece of a much larger medical device company.  But the pieces would fit together very nicely, and Medtronic wouldn't have to build it from sratch as they say.  Plus, I find the possibility of Medtronic gaining broader coverage for Bayer's meters even more interesting.

But right now, it's all speculation.  Still, we're likely to hear something before too much longer (a seller won't keep a business up for bid indefinitely), but a good place to look would be at Bayer's Investor Relations web site (see http://www.investor.bayer.com/en/ as any news that the company has sold the business is almost certain to appear there first).

Until then, stay tuned!

Author P.S. (Oct 26, 2012):  It appears Bayer's sale of the meter business isn't going to happen.  Today, Reuters reports http://reut.rs/U0BuZw "Bayer AG has called off the sale of its blood glucose meters business for now, Financial Times Deutschland reported, citing industry and financial sources."

Brehm Coalition to Shake Diabetes Research Up; Putting Science 2.0 into Action

At the beginning of this year (2012), I shared a New York Times article entitled "Cracking Open the Scientific Process" (see that article at http://nyti.ms/PjKZpS).  That share seemed to encourage my friend Manny Hernandez (founder of the Diabetes Hands Foundation/TuDiabetes and EsTuDiabetes, catch his post HERE) to come out of his personal blogging hiatus.

That New York Times article wrote about the 200th anniversary of the New England Journal of Medicine this year.  However, although the traditional scientific process still works, it is agonizingly slow, hence it's not really cause for celebration.  To use an analogy, typing papers works too, but no one does that anymore, and with very good reason; it simply isn't as good as using word processing software is (with built-in spell-checking and formatting functions) and today, it's a real challenge to even find typewriter ribbons anymore.  Indeed, if one looks to television as an example, consider the TV show "Murder She Wrote" starring Angela Lansbury as an example.  The opening sequence of that show depicted the lead character Jessica Fletcher typing on an old-fashioned typewriter, but by that time that show ended in 1996, she was actually using a word processor!  Yet it seems as if diabetes researchers are still using old-fashioned typewriters.

Below is an excerpt from the New York Times article I mentioned when I began this post:

"For centuries, this is how science has operated — through research done in private, then submitted to science and medical journals to be reviewed by peers and published for the benefit of other researchers and the public at large. But to many scientists, the longevity of that process is nothing to celebrate.

The system is hidebound, expensive and elitist, they say. Peer review can take months, journal subscriptions can be prohibitively costly, and a handful of gatekeepers limit the flow of information. It is an ideal system for sharing knowledge, said the quantum physicist Michael Nielsen, only 'if you’re stuck with 17th-century technology.'"

As I wrote a while ago in my post "The $100,000 Diabetes Cure", there are many reasons for this, notably the fact that this is the way academia has always worked.  But that doesn't mean the process is flawless.  Anyone who lives life with a chronic disease like diabetes who has ever heard that a cure, or even the so-called "artificial pancreas" would be around in 10-20 years no doubt agrees. The current medical research process is just too darn slow, and the incredible sluggishness of that process is a genuine problem in an era where advances in most other areas of science seem to be leapfrogging those in medicine.

One need look no further than computer technology, for example, to see of how technology can advance with less encumbered research and development process.  Consider that as recently as 30 years ago, the PC or "personal computer" was still pretty much a dream that a few geeks envisioned might become possible someday in the future.  Today, not only have PCs become mass-market devices, but many people now also have mobile phones (which were pretty new back in 1982, did any of my readers have a Commodore 64 back in the day?), but today, your smartphones (Apple iPhone or Samsung Android phones, for example) have as much processing power and capability as early PCs did back in 1982, plus you can play your whole music collections on it or surf the internet on it, too, all in a device that literally fits in your pocket.

But when it comes to diabetes research, the process has been agonizingly slow.

That's frustrated some generous donors to nonprofit organizations that support cure-specific diabetes research.  One such family is Bill and Delores (Dee) Brehm.  Mr. Brehm is a University of Michigan alumni and a longtime supporter of his alma mater.  Today, the couple lives in the D.C. suburbs in Virginia, and while the Brehms have also been long-time JDRF supporters and still are, today, they are putting more of their personal resources into something they've dubbed "The Brehm Coalition" (http://www.brehmcoalition.org/) which they began in 2007 instead.  They are using their generosity to try and fundamentally change the way diabetes cure-related research actually gets done.

Bill and Dee Brehm

For the record, Dee Brehm has lived with type 1 diabetes herself for 62 years, having been diagnosed with type 1 diabetes as a 19 year-old college student in Michigan back in 1949.  The University of Michigan's Brehm Center for Diabetes Research eloquently describes a conversation the couple had on a quiet Sunday evening their home in McLean, Virginia, twelve years ago (in 2000):

"Dee Brehm was preparing dinner when her husband, Bill, walked into the kitchen and asked what he could do to help.  With the quiet intensity of a woman who had been monitoring her blood sugar for 50 years, Dee turned around, looked at Bill, and said, "You can find a cure."  Bill paused for a moment, and then replied simply, 'Okay ...'

'I don't know why I said it,' Dee says today. 'But that kitchen conversation changed the direction of our lives.' Dee knows that her husband takes no challenge lightly."  (see HERE for more).

While they have long generously donated their own money towards diabetes cure research including a center at their alma matter at University of Michigan (to the tune of over $44 million), they also saw other technologies progressing much faster than medical research for cure-related research in diabetes was, so they asked if something could be done differently?

Frustrated by the agonizingly slow pace of advances in diabetes, they aimed to shake that comfortable establishment up by putting their own financial resources into it.  But unlike average donors, their generosity and philanthropy is significant enough to get noticed.  (Incidentally, Dee Brehm was was also chronicled in Diabetes Health magazine back in 2008, see HERE for that article).

They saw the current review "process" used in medical research as something that was delaying advances, and it was something that needed rethinking.  Hence instead of putting their donations towards an existing diabetes charity like the JDRF (which they continue to support, incidentally,  just not at the same levels they once did), the Brehm's decided to try and shake up the diabetes medical research establishment.

Hence, what is known as "The Brehm Coalition".  The Brehm coalition's website describes it as follows:

"The Brehm Coalition is a unique group of nine senior scientists from eight universities devoted to the creation of a new paradigm in medical research based on an unprecedented level and style of laboratory collaboration. Their chosen research pathways are aimed at accelerating the search for a cure for Type 1 diabetes.

Under the leadership of the nine Brehm Coalition researchers, over 100 individuals are working to fulfill the Coalition's research mission - to cure type 1 diabetes."

In 2004, Dee and Bill Brehm gave the largest gift in the history of the University of Michigan Health System, and the second-largest ever received by the University. The gift stands apart not only for its size but also for its vision.

The Brehm Coalition is indeed following the "Science 2.0" model as Manny Hernandez described it, and what an incredible roster of core participants they have.

Immunologists:

• Mark Atkinson, University of Florida
• Jeffrey Bluestone, University of California San Francisco
• George Eisenbarth, Barbara Davis Institute
• Kevan Herold, Yale University
• Matthias von Herrath, La Jolla Institute for Allergy & Immunology

Beta Cell Biologists:

• Domenico Accili, Columbia University
• Peter Arvan, University of Michigan
• Matthias Hebrok, University of California San Francisco
• Chris Rhodes, University of Chicago

Use of Technology for Collaboration

Even more interesting and impressive is how the Brehm Coalition says they are using technology to collaborate.  The website notes (see HERE):

"The Brehm Coalition members are located hundreds and even thousands of miles apart from one another. However, direct communication, so essential to close collaboration -- is accomplished with face-to-face reviews three times per year, and simulated 'face-to-face' meetings once a month using a combination of desktop videoconferencing and application sharing. This setup allows seamless communication and high-definition video clarity, and is used not only for the monthly conferences involving all nine members of the Coalition, but for more frequent conversations among the scientists as the need arises. No 'appointments' are necessary to connect. The system virtually eliminates the heavy time and cost burdens associated with traveling and promotes the highest level of group interaction and communication simply because it is easy to use.

Further innovations in communication are under development by the Office of Enabling Technologies at the University of Michigan Medical School as part of the infrastructure support of the Coalition."

The idea of collaboration is key here.

Instead of waiting for months for something to be reviewed and ultimately published in a journal someplace, participating members of the coalition can literally share ideas and thoughts real-time.  Assembling this coalition was just the first step, and the fruits of this coalition have yet to be harvested, but this could indeed be an amazing step in the right direction.

Now, before I sign off, let me just note that there are other collaborations, such as those at the Diabetes Research Institute/University of Miami's Miller School of Medicine along with their collaborators at Karolinska Institutet in Stockholm to name one example.  But outside these examples of collaboration, the science simply doesn't get shared with other researchers in the same field until it gets published in a journal.  One can hope that the Brehm Coalition will change the way medical research is handled going forward.