D-Feast Friday: "God, Do I Really Have to Blog About Food?"

I'll be honest, I think there's already way too many books, articles and far too much unsolicited advice for people with diabetes (PWDs) about food already -- not all of it's even useful, but because there's plenty of lousy advice out there when it comes to diabetes (see here if you need convincing), why should the subject of food be any different? Because of this, I seldom cover the topic of food at all. Food already gets too much attention IMHO (in my humble opinion), even though managing this disease involves a whole lot more than simply managing our diets. My blog's focus is primarily on the industry (business) of diabetes -- which on a worldwide basis is hundreds of BILLIONS of dollars, relevant events in the public/government sector, and cure-related news -- all areas that I think don't get nearly enough coverage. But when I learned of D-Feast Friday, I figured I could bend my rule for this particular occasion!

It began as a conversation on Twitter, but thanks to a few individuals (including my college d-friend who I didn't even know had type 1 until long after we'd both graduated, the fabulous Karen, the same person who also prompted the Diabetes Blog Week event earlier this year), as well as Lorraine (Caleb's Mom). This idea takes on a different format -- d-friendly dishes actually tried and used by real people who live with diabetes (so much "advice" comes from people who don't actually "walk the walk") that I believe some readers may find more interesting reading than some other themed blog events have. A few other diabetes bloggers (d-bloggers)/Tweeters also had some hand in the development, or in promoting the event. See the following for more background:

http://bittersweet-karen.blogspot.com/2010/07/join-us-for-d-feast.html

http://blog.elizabethjoyarnold.com/2010/07/16/d-feast-friday/

http://diabetesaliciousness.blogspot.com/2010/07/d-feast-de-resistance.html

http://www.diabetesmine.com/2010/07/get-your-cook-on-community-launches-d-feast-friday.html



Why Blog About Food?

Food is often very personal which is why I think there's so much variety. I personally find many (OK, a majority) "diabetes" recipes and suggestions just plain nasty and flavorless, using gross combinations of bland and flavorless ingredients (often fish, and there are so few fish recipes I even can stomach anyway - I know it's supposed to be good for us - and I'm extremely picky when it comes to seafood, so I avoid most fish recipes like the plague). Most of the time, I think fish "recipes" are just plain gross, and the smell is downright sickening, no matter what they try to do to it.

But I have also learned to cook over the years (my waistline proves that much, though I know it's because I haven't been to the gym regularly, and my energy expenditure -- at least the physical but definitely not the mental -- part of the balancing act is deficient). While I'm not exactly a chef, I can certainly hold my own on dishes I've mastered, so I'll provide a few here, and we're not talking about barbequeing in the back yard here (I live in NYC, so I don't even have a grill, or a back yard for that matter!), and I definitely can tell what I like and don't like, and my tastes are definitely global in nature.

GIGO (Garbage In = Garbage Out)

First, this acronym isn't mine. I borrowed it from Scott K. Johnson (see here) who apparently borrowed it from CDE Gary Scheiner, who I mention later in this post, but because it's applicable to so much of diabetes manaement, ranging from insulin to knowledge, to food, I'm using the metaphor here.

For me, the key to any good dish is using quality ingredients, preferably fresh and as close to the source (of the foods) as possible. I try to buy organic and non-GMO whenever possible because I do not believe in genetically-modified crops (known by the unflattering term "frankenfood" by many). But given an choice between non-organic yet locally grown, I'd probably go with locally-grown because it's always fresher (sometimes you might even get to speak with the farmer), and has the added benefit of being "greener" by virtue of the fact that it requires significantly less energy for delivery than crops transported from halfway across the planet. Practically speaking, that usually means fresh vegetables, and using as few processed foods as possible -- meaning pre-packaged, high in white flour (or any flour), sugar or it's evil twin high-fructose corn syrup, sodium, etc. You have to make the stuff yourself, so even if it's the junkiest food anywhere -- think of things like potato chips or tortilla chips -- widely considered to be junk foods, but they're still always better for you when you make them from scratch, as my Mom would say, because you can control what goes into them and skip the ingredients you can't even pronounce. Remind me again what xanthan gum is?

I try to follow recipes closely, but I've been known to deviate from them when it makes sense. For example, if I like most of the ingredients in a recipe except for a particular one, I'll "86" the ingredient I don't like, and maybe replace it with something I DO like. I also tend to be a bit more liberal with some of the spices because I'm a bit of a spice whore -- not by a lot -- but for example, I've been known to add more garlic, salt & pepper more generously than an ingredient list specifies. But I do try to stick as close as possible to the original quantities in the recipe so that others don't complain that something I've made is too spicy, too salty, too peppery or too much of something else.

So I'm going to break my first rule already and make a fish "recipe" (actually two!) -- well, sort of! Canned tuna has a bad reputation. It's sometimes depicted as a mercury-laden fish product that was a staple of school lunches when we were kids, but having no place in gourmet anything. But that's because of how it is routinely served and used. It's usually laden with mayonnaise, or else in some kind of unglamorous casserole, which by definition, are usually calorie-dense dishes with lots of noodles, cheese or creamy canned soups, maybe topped with breadcrumbs. Canned tuna is viewed (unfairly) as having no place in gourmet anything. I actually love canned tuna (Bumble Bee Lemon Pepper tuna is great in a salad), and my goal is to prove this wrong for both an appetizer and a main entree.

This first one is for a hors d'ouvre. I don't recommend the pâté with the tuna entree, but I'm providing recipes for three courses which you can use whenever. The good news is these dishes are easy, tasty and the ingredients aren't hard to attain -- and better still, most are pretty inexpensive!


Tuna Pâté

The first recipe is for tuna pâté as an appetizer, which I recommend be served with crudité (which is basically sliced or whole raw veggies; celery - which is my personal favorite - carrots and grape or cherry tomatoes are widely available already-prepared, but you can also add or subsitute sliced cucumbers, broccoli and/or cauliflower florets, julienned peppers, etc. in whatever combination you like), or if you like, crackers or breadsticks (crudité is the carb-friendly option). Pâté is usally very fattening made from abbatoir animal livers. Health food? The French may disagree, but probably not. But it does add taste and substance to your hors d'ouvres, and this one is a significantly lower-calorie and fat version. There are "mock" versions of tuna pâté that are strictly vegan, but this is enough of a stretch from liver pâté, so I won't push the envelope quite that far. Now, truth be told, I actually got this recipe from an author named Mollie Fitzgerald, a Duke University student (at the time) who wrote a dormitory cookbook called "On Campus Cookbook" back in 1984. The recipes were designed to use ingredients that you could store in a dorm room, or be easily attained on-campus and prepared with common appliances (fridge, microwave, hotpot, blender, etc.) that are likely to be found in some dorm rooms. It's the only recipe from this cookbook I still use, but I think this one is a keeper, thus the reason for my including it here.


Ingredient List:

2 7-ounce cans of tuna, preferrably packed in water, well-drained

2 heaping tablespoons of plain yogurt

Juice of 1 lemon

1/2 onion, chopped

pinch of cayenne or black pepper


Instructions:

1. Place the tuna and the yogurt in the blender and process until smooth. Add the other ingredients until well combined. Now, here's where I'm going to make a recommendation that Ms. Fitzgerald did not, likely because I doubt many college kids keep food processors (or even the miniature version, such as a Black & Decker Mini-Chopper which is an awesome tool, by the way!) in their dorm rooms -- even blenders may be scarce except for those who really like margaritas! But I highly recommend using a food processor (or it's minitaure version, a chopper of the sort noted above) over a blender because I think the blender pulverizes the ingredients and makes them too liquid-y for my personal preference. A food processor/mini-chopper will address that issue perfectly.

2. Taste and correct the seasoning. Transfer to a bowl for serving. If you have a refrigerator (and I think most of you will!), cover and chill for an hour - the flavor will improve.

Serves 4-6



Scott S's Version of Bertucci's Sweet Italian Sausage (and Spinach) Soup

Next, I will start with a first course of soup. This is a recipe that I make occasionally, usually during the fall and winter, but its great anytime. I love soups of all types except for cream of anything -- I'm not fond of dairy products in my soups, and those soups also tend to be very high in calories (think of the calories in New England clam chowder relative to Manhattan Clam Chowder and you get the basic idea). Generally, all soups are filling, often low-calorie and can be quite low-carb as well, making them ideal food choices for PWDs.

Believe it or not, I made this next recipe up for myself, although truthfully, I tried to copy or at least imitate the same item on the menu of Bertucci's (a Massachusetts-based Italian restaurant chain that has locations throughout 10 states in the Northeast). You'll note that my version differs from some of other versions of this recipe you might find online in a few important ways.


Ingredient Discussion

Rice:

First, one of the ingredients in this soup is rice, which is very carb-dense. Let me remind you that CDE Gary Scheiner notes about rice in one of his books:

"A cup of rice has more carbs than a cup of pasta [such as noodles that frequently go in soups]. In fact, there is about 50 grams of carb in a cup of instant rice, and 30-40 grams in a cup of pasta. Rice prepared at most Asian restaurants is even higher - as much as 75 grams per cup, because the starch that the rice sheds as it cooks is not rinsed off."

Rice is a relatively minor ingredient in this recipe, and I don't think you should try to remove it from the recipe because it just wouldn't taste right without it. But I do have a way of reducing some the carb content for this particular ingredient, which for me, is actually much higher on the glycemic index than white bread.

A fair number of popular soup recipes that have rice as an ingredient (I'm thinking of chicken and rice soup, for example) call for you put UNcooked rice into the soup and let the rice cook into the broth itself. That's a big mistake for this one. Acknowledging Gary's note above, I knowingly choose to use a smaller amount of rice in this recipe, and perhaps more importantly, I recommend that you PRE-cook and also rinse the pre-cooked rice before adding it to this soup. This enables you to reduce quite a bit of the unnecessary starch that would otherwise go into the soup base. Also, it ensures thia soup will not become thick and gelatinous, which is not the character for this soup.

Soups calling for rice generally do better with long-grain rice varieties; short-grain rices or something like italian risotto won't work. My preference is for Jasmine rice but any long-grain variety of white rice will work. Just avoid instant and boil-in-the-bag varieties. Note that rice will continue to absorb the soup broth, which can break as the soup cooks down -- that's fine, the important thing is the taste and texture it imparts along with the other ingredients. Some people sing the praises of brown rice, but brown rice won't work in this recipe because it takes longer to cook, and the nutty flavor of brown rice just doesn't work well at all with the other ingredients.


Sweet Italian Sausage meat:

Now, let me say that sausage of any type is anything but low-calorie, and may be higher than recommended in terms of saturated fats -- there no news there. But realize that in this recipe, the sausage, while a vital ingredient for the flavor, is not the bulk of what will actually end up in your soup bowl, which is mostly broth and spinach. The key here is the fennel-flavored and seasoned sweet italian sausage adds a truly unique flavor to this soup, one that cannot be replicated with some alternative ingredient, so unless it's sweet italian turkey or chicken sausage (I've never tried using sweet italian turkey or chicken sausage for this, so I can't really comment on whether the flavor is similar enough), don't try and get too creative on alternatives on this particular ingredient, because I think you'll loose the very essence of the recipe.

Sweet italian sausage is widely available across most U.S. supermarkets. Typically, this is pork and/or beef, but I have also seen lower-fat turkey and chicken varieties -- I seldom use that, so I can't really comment on their flavor in this recipe. For those who TRY to follow Kosher or Halal dietary guidelines (loosely anyway, although I don't think any sausage qualifies), this would be a necessity. As noted, it is the unique seasoning that makes sweet italian sausage special -- a combination of fennel and other spices -- so don't use another type of italian sausage, because the flavor just won't be the same. You may need to buy this ingredient as sweet italian sausage links (usually about 6 links) and remove the casing before pre-cooking the sausage meat. This is a hassle, but is a worthwhile step, because it just doesn't brown the same way if you cook it with the casing still on. Sometimes, you can also get sweet italian sausage patties and you would use about a comparable number of those, the patties are much easier to work with but aren't always available. Because all sausage tends to be greasy and a bit messy to work with, I tend to buy this particular ingredient in bulk at Costco or BJ's, cook it all at once, and then freeze it, pre-cooked and then use it as the need arrives. You can even add the precooked, frozen sausage to the heated soup base -- it doesn't necessarily need to be thawed before adding it because it will just cook in with the other ingredients anyway. This way, you can prepare this ingredient long before you plan to use it!


Ingredient List:

8 cups beef broth or beef stock, or a comparable amount of beef soup-base mix (sold in some supermarkets or warehouse club stores) and water (although home-made beef stock would really be soooooo much better, because I seldom cook any type of beef myself, I don't usually make beef broth or stock myself; just note that the sodium levels in pre-made stocks or soup-bases is very high, so if you have hypertension issues, you may need to choose a lower-sodium variety which can be more difficult (and expensive) to find, but home-made is preferrable anyway -- but I'll have to refer you to another source for instructions on how to make it.

1 pound sweet italian sausage meat, cooked well (browned) and broken up (see my notes above for more details)

1 (28 ounce) canned diced tomatoes (plain or with Italian herbs, your choice). You can, if you wish, use finely-diced canned tomatoes instead.

1 package Ready-Pack fresh, baby spinach (you can add slighly more if wanted; this ingredient adds an incredible, irreplacable flavor to the soup base and cannot be skipped, but just be sure to let it cook down before adding more). I use Ready-Pack fresh, baby spinach (found in the produce aisle of most supermarkets), but you can get away with using regular fresh spinach (avoid canned or frozen spinach). Personally, but I don't care for the thick stems of regular spinach and I think they're bitter, so baby spinach let's you avoid both with ease.

3/4 cup pre-COOKED, rinsed white rice (see my notes above)

1-2 medium onions (yellow or white, just don't use sweet Vidalia onions), chopped. Now, I have also tried it with thinly sliced onions, which adds a very nice texture to the soup. But you'll get slightly more flavor from chopped onions, but either works -- the flavor is why this is ingredient is included in the recipe. If you're lazy, you can buy frozen, chopped onions and just add about a half a bag to the soup base.

Black pepper (ideally, freshly ground) and salt (I prefer sea salt, but I avoid Kosher salt like the plague for this recipe because it has a very salty flavor that's much better suited for other recipes) to taste

1 tablespoon olive oil (this ingredient is OPTIONAL ... depending on the fat content of the sausage added, you may be able to skip this ingredient altogether)

Worcestershire sauce (this is an optional flavor additive, and many people avoid it because it contains anchovy base and fermented malt vinegar -- there are also vegetarian varieties sold in places like Whole Foods). I usually add a few splashes, but you can add this flavor ingredient at your own discretion


Instructions:

1. Note that the soup broth/stock/base should be the starting point, so put it into a large stock pot and add the can of diced tomatoes (juice included) -- just dump the whole can in (this part is the most fun!).

2. Next add the pre-cooked sweet italian sausage meat. Bring to a boil (not a simmer) and add the uncooked, diced (or sliced) onions. While this is cooking, add the fresh spinach 1-2 handfuls at a time. Let the spinach cook down a bit before adding more, and just keep adding until you've added the entire package.

3. Once the spinach is cooked down, reduce the heat and simmer for about 2 hours. This recipe's flavor develops with the ingredients cooking together, so the longer it cooks together, the better the flavor will be. You may add pepper, salt and Worcestershire sauce at your discretion. Like many soups, the flavor develops over time, so the longer this sits with the combined ingredients, the better the flavors will meld together, but I consider 2 hours a minimum for proper flavor.

4. The final ingredient to add is the rice. I do this shortly before serving because the cooked rice kernels continue to absorb the soup broth, and will break apart and reduce the amount of broth in the soup.

Final thoughts: If you have any leftover soup, you may refrigerate and reheat it, just note that the rice may require that you add some additional water (try adding a cup at a time; if you add more than 3 cups, you should also add a beef boullion cube with it to maintain the flavor; pepper, salt and Worcestershire sauce can also be added at your discretion).

I also do NOT include any cheese of any sort in the recipe, although I've seen recipes online that call for this ingredient. For me, this ingredient adds unnecessary calories to the recipe without adding anything to the flavor, so I recommend just skipping it -- why mess with something that already works?

Pasta With Tuna and Olives


Some of you are already saying "what the hell is pasta doing in a diabetes-friendly recipe? Well, believe it or not, sometimes pasta is a PART of a dish, not necessarily the entire base. For me, the key to success is using a high-fiber pasta, and there are 2 brands that you can look to for this ingredient.

Dreamfields or Fiberwise pasta, which has a much higher-than-normal portion of fiber, which can be subtracted (if greater than 4 grams per serving) from the total carb count is really the only option for this ingredient.

Finally, let me note that the creator (or reporter) of this New York Times' "Recipe for Health" prefers to use fusilli as the pasta of choice, because she says she likes the way the tuna gets lodged in the twists of the corkscrews. I've never found that to be true, but she notes that other types of pasta, such as penne or spaghetti, work just as well. My personal preference is penne because it is less carb-dense than other varieties mainly because it's hollow tubes of pasta and takes up more room on your plate than a comparable amount of spaghetti, making it look like more food.

If you want to make a complete meal of this -- and I usually do -- the creator recommends adding a green vegetable to the mix. I usually do a side salad, but fresh string (a.k.a. green) beans (since it's summer) are another awesome choice!

Ingredient List:

1 6 1/2-ounce can water-packed light (the author says not albacore; but note that I used albacore and was fine with it, but the point in recommending the cheaper variety was the mercury content present in albacore varieties, so choose the kind you like) tuna, drained

1 to 2 tablespoons extra virgin olive oil (to taste)

1 garlic clove, minced (you can add a bit more according to taste)

1 cup fresh tomato sauce or a good prepared marinara sauce (you can use some discretion in choice here; I'm partial to Classico, but if you have home-made, go with that instead -- this uses only a small amount because it's not a sauce recipe as such)

2 tablespoons chopped flat-leaf parsley or slivered fresh basil

Salt and freshly ground pepper (freshly ground pepper is much better than pre-ground, and I also prefer sea salt for its flavor -- believe it or not, it's slightly lower in sodium because of it's "saltier" flavor)

1/4 to 1/2 teaspoon dried red pepper flakes (optional, but I think gives it a needed kick IMHO)

1/2 cup pitted imported black olives, such as kalamatas, cut in half or into quarters lengthwise (I must admit, I used canned, sliced black olives and they were just fine, but olive afficianados might disagree)

3/4 pound fusilli, penne, farfalle or spaghetti (I prefer using Dreamfields or Fiberwise pasta which I noted above, which are much higher in fiber than regular pasta and really don't wreak havoc on my blood glucose levels). This is really a MUST for this recipe, so don't go cheap and buy the store brand for this ingredient.

Freshly grated Parmesan for serving (optional; note: freshly grated is soooo much better than that canister of Kraft parmesean you have in the fridge)

Instructions:

1. Begin heating a large pot of water for the pasta. In a large pasta bowl, break up the tuna. Heat the olive oil in a small frying pan or saucepan over medium heat, and add the garlic. Cook, stirring, just until fragrant, and remove from the heat. Add to the tuna. Add the parsley or basil, and mix together.

2. Add the tomato sauce to the pan, heat through, and then add the red pepper flakes if using. Stir in the olives.

3. When the water for the pasta comes to a boil, add a generous tablespoon of salt and the pasta. Cook al dente, until firm to the bite, following the cooking instructions on the package but checking the pasta a minute or two before the indicated time. Remove two tablespoons of the cooking water, and mix with the tuna.

4. When the pasta is al dente, drain well and transfer to the bowl with the tuna. Add the tomato sauce with the olives, toss everything together, and serve. Pass the Parmesan at the table.

Advance preparation: The recipe can be prepared through step 2 several hours ahead of cooking and serving the pasta. Fresh tomato sauce will keep for three or four days in the refrigerator, and it freezes well.

Key Challenges Ahead For JDRF's New CEO

On May 13, 2010, the Juvenile Diabetes Research Foundation (JDRF) issued a press release that it's CEO, the guy who formerly ran Novocell (a company that hopes to cash in on widespread islet transplantation for type 1 diabetes -- note that the company recently changed it's name to ViaCyte) had resigned, after just a little over 1 year on the job -- in fact, he didn't even stick around long enough to give the organization's annual "State of the Foundation" address! He claimed he was leaving for personal reasons, and would be returning to be with his family in Southern California (the JDRF is based in New York, although the CEO before him lived in St. Louis and split his time between his home and JDRF headquarters New York).

I could understand it better if this wasn't becoming a recurrent pattern for JDRF's CEOs in recent years. But for some reason, the JDRF has not been able to hold onto a CEO lately. What makes this even more puzzling is the fact that the job market has been tight for many top executives in many fields, including the nonprofit sector. According to The Wall Street Journal "No one knows how many out-of-work CEOs are looking for corner office suites, but recruiters say their numbers are growing. Fewer big businesses are switching bosses these days and mergers and bankruptcies have further reduced their job prospects. Only 48 companies in the S&P 500 index changed leaders last year, the lowest level since recruiters Spencer Stuart began tracking it in 2004."

Over the last few years, there has been a parade of new CEO's in the top slot at JDRF, each leaving sooner than the predecessor. In each case, the CEO stepped down rather unexpectedly after a short time on the job. JDRF Board Members should probably be asking WHY is this happening, and then what is the organization's leadership doing to prevent it from happening again so quickly?

I believe the JDRF needs solid leadership, but frankly, I think it's been a huge mistake to try recruiting leaders from the "diabetes industry" because of the very reasons we saw with Alan Lewis. Private industry can offer executives more money, and it's very tempting for them to take their leadership skills elsewhere and/or to cash out altogether. By looking to diabusiness for candidates, the organization likely hopes to have someone who has some understanding of the disease so their learning curve won't be so steep. That's fair enough, but isn't the lure of big bucks from a for-profit company a bit too tough for a nonprofit to compete with?

In fact, during 2009, we know that CEO Alan Lewis took no salary from the organization, although it's worth mentioning that he volunteered to do so. But going back to previous CEOs, the salary in 2008 for Arnold Donald was $531,040 plus another $82,138 for contributions to employee benefits plans and/or deferred compensation plans. Grand total: $613,178. When it comes to CEO and other top executives' pay, that's quite low on the scale. Most CEOs have unexercised options in the stock of the companies they lead that's worth more than 10 times that amount (or more). So we know that the pay as CEO of JDRF isn't extraordinary. As a matter of fact, the organization's Senior Vice President of Scientific Affairs, Robert Goldstein, and Richard Insel, JDRF's Chief Scientific Officer -- according to the organization's annual IRS filings -- are the highest paid employees, not the CEO. But the demands and hours required for the CEO of the JDRF are typically far less than they are for CEO of almost any for-profit company, so it's a pretty cushy job with a big-shot title. The top job is usually awarded to someone who has already lead a company or organization, but has no other responsibilities and is now quite financially comfortable and doesn't really need a salary. But that also means that they could easily be distracted or lured away, as was the case with Mr. Lewis.

JDRF's Latest CEO Search Ended More Quickly Than The Last

In June, the JDRF announced that it had hired yet another new CEO (this one to replace Alan Lewis). The organization filled this position much, much more quickly than it did when Peter van Etten stepped down (it took the organization well over a year to fill the vacancy at that time), but given the recent history of CEOs stepping down, I think the JDRF absolutely must have succession plans outlined and in place so the organization isn't left without clear leadership in the event that the top exec leaves again. I should remind my readers that the newest CEO is the third CEO the organization has had since Peter van Etten retired from the position at the end of 2005 after serving 6 years in the position. In other words, the last CEO was the organization's third new leader in less than four years. Mr. Lewis also had the decidedly unflattering description of having had the shortest tenure as JDRF's CEO since the CEO position was first created in the oranization.

JDRF's Board of Directors named fellow-JDRF Board Member Jeffrey Brewer as CEO, who is perhaps best known for a string of internet startups which he then sold and made a personal fortune from. Mr. Brewer also has a personal connection with type 1 diabetes, as his young son Sean was diagnosed the disease since 2002, but he's also a relative newcomer (although not as new as several of the recent lineup of JDRF CEO's have been), having quickly risen through the ranks of various leadership posts in the largely-volunteer run organization.

The naming of Mr. Brewer as CEO, as might be predicted, did set off an immediate question given his role in pushing so the organization so hard to fund the so-called "artificial pancreas" project, which many long-time fundraisers (including a few of the organization's founders) and supporters view as a significant deviation from the organization's core mission to find a CURE for type 1 diabetes and put itself out of business. Some have called it a costly boondoggle that will mainly enrich the drug and medical device companies, who will charge healthcare providers handsomely for the technology that the JDRF has largely shepherded through the costly development cycle. This is no small issue, some 47 million Americans lack any sort of healthcare coverage at all (including an estimated 3 million Americans with diabetes) and they will most likely not have any sort of coverage until major portions of the U.S. Healthcare legislation become effective in 2014. Even if it gains FDA approval, the costly devices will very likely to remain inaccessible to many patients (even in spite of JDRF's support) largely because of the cost, thanks to durable medical equipment caps that exist on many plans. I recently communicated with a parent who had 2 children with type 1 diabetes, and she had to stagger the timing when each child could get a new insulin pump over a period of 2 years thanks to this very issue. She also felt that JDRF should not really have to fund studies to justify insurance coverage for the devices when for-profit companies stood to make millions on the devices. Her feeling was that the organization's resources would be better spent on autoimmunity treatments that would help with a so-called "biological" cure given the issues we collectively face with uncontrollably rising healthcare costs.

Donor-Centric Organizations Require Complete Financial Transparency; The JDRF Isn't There -- Yet!

The JDRF has provided few concrete details on the actual budget for it's Industry Discovery & Development Partnership (IDDP) program, which unless I'm mistaken, is how the "Artificial Pancreas" project is being funded. While JDRF funds certain elements of these programs, private industry should ideally be picking up part of the cost, but without financial disclosure, many fundraisers/donors feel as if they're deliberately being left in the dark about an important program being sponsored by the organization.

Section 6104 of the U.S. Internal Revenue Service code requires that a nonprofit organization to make its Form 1023 (or 1024 if applicable), 990, and 990T [501(c)(3)s only] available for public inspection, and JDRF claims this information is posted on it's website, but I have always found it far easier to locate these tax documents via The Foundation Center. The Foundation Center is a national nonprofit service organization recognized as the nation's leading authority on organized philanthropy, which maintains one of the most comprehensive databases of U.S. tax returns for U.S. nonprofit organizations anywhere. Using this, one need not search countless pages looking for a needle in a haystack; just enter the name or tax ID code (which can be found on the tax filing itself) and voila, a listing comes up without any other stuff. You can access this extensive database here or by using this widget (Note: the widget requires JavaScript to be installed on your computer in order to function):



(Incidentally, you can look up any other nonprofit here, too, including the ADA, the DRI, the Diabetes Hands Foundation and many others on this site.) But donors are left with few details on just how much the organization has allocated to the IDDP project, and some long-time fundraisers feel entitled to know. Former JDRF CEO Arnold Donald pushed to make the organization much more "donor-centric" (see here for details) but that requires an ongoing organizational commitment to succeed.

Not too long ago, a nonprofit survey asked "What does 'nonprofit transparency' mean to you?" and the responses generally fell into two categories: (1) financial accountability and (2) openness about missions and programs. Given how broadly-defined the JDRF's IDDP program really is, many donors/fundraisers want to know more about exactly how much is actually being spent on the various programs here to determine if it's a real deviation from the organization's stated mission or not. Unfortunately, the public filings have answered few (if any) of their questions.

Mr. Brewer has had the great fortune to be able to dedicate personal time that many parents of children with diabetes simply do not have the luxury of doing, which means he's out-of-touch with many donors'/fundraisers' needs. In fact, he's had no relevant personal experience in the kinds of day-to-day challenges many parents of kids with diabetes face. Today, many parents of kids with diabetes struggle with complicated insurance issues that grow ever more costly by the year, routine changing of drug formularies that virtually force the switching of preferred insulin brands, and routine denial-of-coverage for such things as insulin pumps not to mention long, drawn-out appeals processes. Many cannot even get such basics as test strips covered, and will likely never be able to get coverage for a costly, closed-loop "artificial pancreas" that Mr. Brewer has been such a big proponent of. We can only hope these not-so-small details are not lost on him. That's why I believe former CEO Arnold Donald's goal of making the JDRF more donor-centric was such a critical strategy, and why it will likely be even more critical moving forward.

Safety In The Organization's Highly Decentralized Structure

First and foremost, the JDRF is now, and always has been a highly decentralized organization. That's always been one of the organization's key strengths. While highly autocratic CEOs have found that challenging to adapt to, it also ensures the organization's creativity and resilience to setbacks like the loss of a leader. Have a look at this video presentation from the 2010 State of the Foundation address to JDRF board members:



Now the key speaker, Leo Mullin, sounds remarkably confident in JDRF's ability to recover from a fundraising perspective, as if the broader economy was a minor inconvenience. So far, JDRF's volunteers and fundraisers have done remarkable work to ensure the foundation has been able to keep funding its research commitments. In that regard, the organization has done better than many peers, but no one should delude themselves into thinking the organization is somehow immune to challenges in the nonprofit fundraising environment. Given that the prevailing economic consensus is generally that this will be a largely jobless economic recovery and even then, we shouldn't expect much of a turnaround until 2012. Clearly, the new CEO has his work cut out for him.

Can Changes At The Top Impact Continuity In JDRF's Strategy?

It's safe to say that during former CEO Alan Lewis' highly abridged tenure (you may catch an interview with Mr. Lewis here), he most likely was NOT able to make any meaningful changes in direction or influence the organization in any material way, shape or form. To his predecessor's credit, Arnold Donald, who stayed in the job only slightly longer, about 2-3 years if memory serves me correctly, did slightly better in his efforts to help reshape the culture of the organization to be more of a donor-centric organization. But that type of effort requires consistency and routine, not the annual CEO parade that has become such a regular occurence at the organization following Mr. van Etten's departure. Change in the corner office may actually have had the opposite effect -- alienating faithful fundraisers such as myself. Last year, although I attended the Manhattan walk with a group, I raised just $50 (a record low for me), which was at least $4,500 less than I had raised in each of the 6 previous walks. Although I have a very personal relationship with type 1 diabetes, having lived with this disease for 34 years (effective July 24, 2010), in recent years, the JDRF and in particular the New York City chapter, has done much to alienate me as an adult with type 1 diabetes.

That's a separate conversation about the clique-y and snobbish nature of the New York City chapter (which includes the money raised by outer-borough parents, even though those individuals are scarcely even represented in any boards or review panels) of wealthy parents of kids with type 1 (most send their kids to private schools, unlike the experience of many suburban parents), and the presumption that any adult affiliated with the chapter simply MUST be a parent of a child with type 1 diabetes was downright insulting. In the New York City chapter, my experience has been mostly negative, more closely resembling Bravo TV's "The Real Housewives of New York City" than it does an organization with a truly charitable mission. But I am optimistic that startup organizations like Act1Diabetes can wrestle some more meaningful representation within the JDRF New York City chapter than the current leadership does because I believe it's badly needed, at least in NYC. But my point is that donors must be central to the organization's ongoing success, and frankly, that varies considerably from one chapter to to the next. More uniformity in how donors are recognized and addressed would benefit the organization as a whole. Let's hope he keeps the "donor-centric" theme alive and well, because failure to do so could adversely impact fundraising for the organization!

The issue of who diabetes organizations represent is a hot topic nationwide these days, and it even came up in the recent Roche Social Media Summit I attended in Orlando a few weeks ago. The fact is that kids with diabetes eventually do grow up, and how well those connections established as children with diabetes survive is playing an increasingly important role in the ongoing sustainability of many charitable organizations. Other JDRF chapters are leading JDRF into this territory far better than the NYC chapter has, fortunately, and I think that's been a benefit to the organization. Let's hope he keeps the "donor-centric" theme started by former CEO Arnold Donald alive! Just how prepared Mr. Brewer is to address all of these issues is unclear, but I think it's apparent that he has his work cut out for him.

The Business of Diabetes: Death of Sanofi Aventis' "GoInsulin" YouTube Channel - Good Bye, or Good Riddance?

I sincerely doubt that many of my blog readers even noticed that pharmaceutical giant Sanofi Aventis (best known to the patients with diabetes as the seller of the Lantus and Apidra insulin analogues) even noticed that the company's "GoInsulin" YouTube channel was rather abruptly terminated by the company recently without much advance notice. But another blogger, Andrew Spong, noticed and he addresses the rather sudden termination of the "GoInsulin" YouTube channel, which according to him, was reportedly one of pharma's biggest (bigger than J&J's YouTube channel, which now rates as #1 since "GoInsulin" was terminated, see here for more detail). Sanofi Aventis has replaced the former campaign with "WhyInsulin" (like type 1s even have a choice) instead.

One reason so few of my readers may have noticed it is because much of my readership has some connection to type 1 diabetes, while the "GoInsulin" campaign completely disregarded people with type 1 as irrelevant, without so much as an acknowledgement of the fact that Lantus is even approved for patients with type 1. I try my best to be as objective as I can and to present facts clearly, but when it comes to insulin, one thing is clear: the type 1 audience is anything but irrelevant (Exubera, anyone?). And for a company that earlier this year (in February 2010) that identified diabetes as a "top priority" in pharmaceuticals and even established a global division to help the company achieve its aim of becoming the top firm in diabetes treatments (see here for the text of that story) to help unseat Novo Nordisk, and the narrowly-focused "GoInsulin" strategy was downright moronic from a business perspective. As I've noted before, at one point, the U.S. Centers for Disease Control estimated that 75% of all insulin users have type 1 diabetes. Many doctors believe this is because fewer type 2 patients use insulin than should be, but regardless of the reason, any ad campaign that completely dismisses type 1s as irrelevant is doomed to fail.

I made no secret of my disdain for the Sanofi Aventis "GoInsulin" campaign when it first began, in fact, I blogged about it about it back on March 12, 2008. I still contend that casting the majority of insulin users aside as completely irrelevant to the insulin sales, which is what the GoInsulin campaign effectively did, the company's marketing strategy was, at best, pound-wise but penny-foolish. In effect, the company decided: "look, there are tens of millions of type 2s, many of whom aren't using insulin ... fuck the type 1 audience -- they have no choice in the matter anyway, and instead target the entire campaign and every cent in marketing dollars on insulin-naïve type 2s". That does little to endear the brand, or the company to type 1s, and is not the appropriate way to market Sanofi's insulin products. And with a product whose linkage to cancer (see here) has yet to be completely dispelled, I don't think Sanofi Aventis could afford to be too arrogant, even if the American Diabetes Association pretty much came rushing to the product's defense, telling patients to keep taking the product in spite of their concerns.

Shallow Campaign

The shallow marketing campaign ignored the not-so-little reality, which is that the therapeutic options for type 2 are greater today than at any point in history, while type 1s now have fewer insulin options available to them that they did in 1976, the year I was diagnosed with type 1 diabetes. Anyone who questions this should consider the facts: today we have no mid-range insulin analogue -- although many endos and commenters on the Novo Nordisk board on Cafe Pharma, including Novo Nordisk salesmen, swear that's the case with Levemir. In addition, the Lente series for Humulin and Novolin have both been discontinued, leaving patients requiring less than 18 hours basal coverage with only isophane insulin, which was widely regarded among doctors as inferior to Lente except that it could be used in premixed insulin varieties (which is the very reason NPH remains on the market today, according Lauren Grossman, Lilly's vice-president of research and development in Canada, according to this testimony before Canadian parliament). This also helps to explain the huge growth in insulin pumps, because alternatives are relatively few. Meanwhile, Eli Lilly & Co., who once dominated the U.S. market, has seen it's market share slip further (see here), although last year, the company reorganized, giving diabetes therapies a new, senior executive vice president (Enrique Conterno) reporting directly to the CEO for the first time in over a decade (since Prozac drove the company's earnings) to turn the sinking ship around.

Marginal Benefit To "GoInsulin" Campaign

While I do believe the Sanofi Aventis "GoInsulin" campaign did aim to dispel many of the common misconceptions about insulin, it did so in a way that was, frankly, rather offensive to the patients who do not have the option to "choose" insulin, and have no other alternative other than choosing a different type or manaufacturer. A campaign that includes all patients is likely to be more memorable, and more effective.

The original "GoInsulin" campaign, and YouTube channel was quite obviously poorly thought-out, thus the plug was pulled on the campaign. A woman at Sanofi Aventis by the name of Lynn Crowe, who was Sanofi's senior product manager for metabolism marketing was widely quoted in the pharmaceutical trade press for the campaign. She told one publication, Medical Marketing & Media (see here), that the "GoInsulin" launch was "... indicative of our belief that expanding social media platforms will play an increasing role with patients, and can be used to effectively deliver information on the risks and benefits of diabetes treatment and care," said Crowe. The campaign, website and YouTube channel. You can thank an interactive agency named Intouch Solutions, of Overland Park, Kansas (located in suburban Kansas City) for the campaign that all but dismissed the critical type 1 audience as being completely irrelevant.

At the time the so-called social media campaign (which ignored a big segment active in social media) launched, Sanofi Aventis completely disabled any YouTube comments, which was by design. Sanofi's site did not take advantage of YouTube's comment feature, technology that pharma has largely avoided to avoid off-label conversations, which could attract the wrath of FDA regulators who have recently cracked down on practices that were tolerated under the leadership of Bush FDA Chief Andrew von Eschenbach, a man known to favor the interests of the pharmaceutical industry rather than the agency's goal to protect the public safety. The company told PharmaExec Marketing Direct Marketing Edition that it was looking into a way to incorporate patient feedback. "We are working to find a way to support a two-way conversation," Crowe said. "It is definitely our goal to be able to utilize this medium to its full extent." Obviously, that never happened.

Sanofi's Lantus Still Rules Basal Insulin -- For Now

As of today, in spite of negative research and press, Lantus still rules basal insulins. While Lantus maintains a unique niche for basal insulin that presently has little real competition (Novo Nordisk's Levemir is widely regared as lasting about 12 hours), but type 1s have been abandoning basal insulin altogether in favor of insulin pumps in increasing numbers.

Levemir is widely panned on Cafe Pharma as lasting half as many hours as Lantus, but the less subtle but possibly more important market trend has actually been the widespread migration of type 1 patients towards insulin pumps, which use only prandial insulin varieties. Rival Novo Nordisk has been on press-release overtime lately promoting it's newest analogue insulin that's still in development, which not suprising, is also a basal insulin (one they're calling "Ultra" Long-Acting, when in reality, the data indicates it lasts about as long as Sanofi's Lantus does). This replacement has been widely expected considering how slow sales of Levemir have grown -- which is considered a sales dud, frankly. The company is calling it's latest invention degludec, which is viewed as a more realistic competitor to Lantus, but it's not ready for approval yet, but it is very likely coming in the next few years. Similarly, Lilly now claims to be working on a new basal insulin (after ignoring that market for over a decade), but it has nothing solid in it's pipeline right now, and even if it comes up with something, it won't be ready for market for another decade.

But several of the startups I noted in January are once again ready to eat Lantus (and Lilly's) lunch. Perhaps furthest along among the startups, which is still only in pre-clinical (animal testing) development, is a product from Biodel, Inc., the Connecticut-based startup that has a rapid-acting non-analogue it calls VIAject now pending FDA approval, and some reports are suggesting we could see an FDA decision on that abbreviated new drug application as early as November 2010. Biodel's basal insulin product has been dubbed BIOD620 which it says is a "Glucose-Regulated 'Smart' Basal insulin" (see here for details). But the company's strategy with this product is similar to that used with VIAject: to use an already-approved product, and modify it slightly using FDA-approved addititives to alter the time-activity profile of the already-approved version. Using this strategy, the company saves costs by avoiding the lengthy brand-new drug approval process needed to demonstrate the product's safety, and therefore increases it's liklihood of gaining regulatory approval in a timely fashion.

Another startup is Cleveland-based Thermalin Diabetes, which has the rights to a number of different analogues (reportedly over 100) developed by Case Western University researcher Dr. Michael Weiss, but all are still in very early stages.

All of this means that the limits to patient, insurance company and doctor choice in insulin may soon change as I suggested in my January 2010 article, see my post here for more details. That cannot come a moment too soon. Presently, the insulin market in the U.S. is highly-concentrated, and the major manufacturers, including Sanofit Aventis, have aggressively raised prices on insurance companies in recent years, even while patent-protection for the earliest analogues is due to expire shortly and follow-on versions of analogues are anticipated by 2012. In fact, an Indianapolis area (in Greenwood, IN, to be precise) company begun by some former Lilly scientists called Elona Biotech, has stated it's intention to enter the field of follow-ons, and Israeli generics giant Teva, as well as a handful of Indian biotech firms are also seen as likely to move into the space, few have done so. The real question is what inherent drivers the brand-name competitors can hold onto. Analysts point to the salesforces, which companies have been cutting back in recent years, as well as their delivery devices (pens), but those so-called advantages may not be the house made out of stone that analysts credit them with.

Is The Complete Exclusion of Type 1s Really Necessary In A Social Media Campaign?

There may very well be millions of untapped type 2 patients out there, but was it really necessary to have a web page and a YouTube channel where type 1s weren't even considered or addressed to be at the core of a campaign that is featured on such TV programs as dLife, which is aimed at both type 2 as well as type 1? Why was there not a single reference to type 1 at all in the campaign, including the not-so-little detail that it is approved for type 1? A type 1 vistor to the "GoInsulin" campaign found not a shred of relevant or even useful information there -- not even a link to a general information page -- which strikes some marketers as peculiar. Whatever the reason, let's try to frame this discussion in a slightly different manner so those who defend the campaign can see it in a different light.

Imagine a company, let's say Coca Cola or PepsiCo for example, derived three quarters of it's sales and profit from a particular market segment. For convenience sake, let's say that market was was females whose very survival was dependent on Pepsi or Coke, while males for some reason seldom consumed soft drinks of any type, only water (or liquor), and had many misconceptions about soft drinks. In effect, it would be akin to saying "Hey guys, we know you have plenty of choices when it comes to beverages (screw you gals because we know you have no choice but our products anyway). That's a bit like Sanofi Aventis' "GoInsulin" comes off to the ignored audience -- a tad offensive, to say the least, especially considering the importance that females actually have in this scenario to the bottom line -- women might even be a tad offended that Pepsi or Coke was taking their business for granted, leaving them out of advertising altogether, and might consider that when evaluating whether a company is trustworthy.

Right now, type 2s are indeed driving much of the growth of Lantus, but today, competition in that space is quite limited. But patent protection on Lantus will expire in a few years, and competition is indeed coming. Whether material changes to the social media marketing strategy are likely to occur remains unclear. Sanofi Aventis' "WhyInsulin" does not make any material changes to the old campaign, raising questions why it even bothered to kill the old one. Like the now-cancelled "GoInsulin" campaign, this one provides not a single reference to type 1 diabetes. Perhaps Lynn Crowe, Sanofi's senior product manager for metabolism marketing, should be reading this blog. But investors should be asking how Sanofi plans to overtake rival Novo Nordisk when it continues to ignore three fourths of the insulin market completely?

Helping Children With Diabetes (CWD) to Grow Up (a.k.a. Adult Type 1 Conference)

I've been kind of an absentee diabetes blogger since June 23, and I've also had a limited presence on Twitter and Facebook (as a reference, I have the same user name for virtually everything, it's "sstrumello" on Twitter, Facebook, as well as here on Blogger), and I feel bad about it. But I did attend the second Roche Social Media summit in Orlando during the last few days of June. It differed somewhat from last year's event, which I wrote on here. I cannot possibly hope to replicate all of what my d-blogging peers have already written on that subject right now, but I can refer you to some of their write-ups on the subject and will do so shortly.

The biggest differences were that this year's event was held in Orlando, Florida instead of Roche's U.S. headquarters in Indianapolis, Indiana. Orlando also had the distinction of being host to two additional diabetes events at the same time. This year's 70th Annual American Diabetes Association Scientific Sessions was held a few days prior and concurrently, the Children With Diabetes (CWD) Friends for Life (FFL) Conference (2010), which takes place each year in Orlando was also in town, giving Orlando the unusual distinction of being a diabetes magnet for a few weeks in late June through early July this year. The annual CWD FFL Conference is the subject of today's post, and I'll get to that in just a moment.

I'm not going elaborate on the Orlando events in this particular write-up, but I hope to add some perspective in a subsequent post in the not-too-distant future. Part of the reason I've been out of the social media world was because my employer was in the process of relocating from it's suburban Long Island, New York location to lower Manhattan on July 3. That meant that I had to pack up my office and pack it in moving bins in the days prior, and then when I returned, I had to do it all over -- in reverse (meaning upacking everything). For those of you who follow me on Twitter, I did share a snapshot from my new office, but for those who don't, here's the details. My new office is in the Financial District of Lower Manhattan, on 120 Broadway. It's literally around the corner from the NYSE, and the subway stop "Wall Street" has an exit in my new building which will be really nice in the midst of the cold winter (right now, the subway stations are hotter than Orlando during summer). Here's a link to my new office building, and the other was to share the aforementioned photo that I snapped with my phone -- it's from my personal office space -- a pretty awesome view of the Hudson river and what used to be the Deutsche Bank building, which was also victim of the 9/11 attacks! The latter is now being deconstructed floor-by-floor and will soon be completely gone.

Anyway, without going on endlessly about my personal whereabouts, today's headline, I hope, captures something that I believe a number of different diabetes organizations are now struggling with today. Children With Diabetes eventually grow up, and when they do, their needs evolve.

At this year's Roche meeting, we met with the ADA, and it became readily apparent that the thought of kids with type 1 growing up being reasonably healthy adults really sort of hit the organization by surprise, and the need for evolution in their care and education frankly kind of the organization by surprise, and they seemed ill-prepared for it. The JDRF, too, is adapting, albiet better than the ADA is. Earlier this year, the JDRF did launch an Adult With Type 1 Toolkit (see here for the press release, and see www.jdrf.org/adults for more on that. But it is very much a starting point, and much more work needs to be done. A few years ago at the Diabetes Research Institute Foundation's annual research update (see here and here), that organization recognized the need before virtually any other diabetes foundation did with some content to address the needs of transition to adulthood at the organization's annual meeting, and found a VERY receptive audience to that content, and has since worked to expand it in subsequent annual research updates.

Anyway, although the Children With Diabetes organization has ALWAYS had great content applicable to adults with diabetes, the name CHILDREN with Diabetes may scare many adults who aren't as on top of things away, which is unfortunate. Since Jeff Hitchcock's daughter is now in college (correction: she has already FINISHED college, thanks to Allison Blass for updating me via Twitter!), I think the organization is seeking input to help design content applicable specifically to address the needs of ADULTS with Type 1 Diabetes (hopefully attracting them to the annual event), and they've told us they'll do their best to try to make sure next year's conference in Orlando addresses those needs. Fellow d-blogger Scott K. Johnson addresses that eloquently in a post this morning, and is asking that readers leave suggestions for content on his post today, so please visit here and leave your ideas as comments on his blog. Together, I believe we have a tremendous opportunity to address the unique needs of adults.

Some of my own ideas, which I've already sent to Scott Johnson, are as follows:

1. Exercise physiology: although exercise physiologists can and do become CDE's, an overwhelming majority are nurses, and the instructions for dealing with exercise more often than not are learned by the patient through trial and error. How about some content to address this more specifically?

2. Questions to Ask During Open Enrollment with Your Employer to ensure your employer sponsored insurance plan best meets the needs of a person with diabetes, and how to effectively evaluate the alternatives presented

3. Abbreviated BGAT (Blood Glucose Awareness Training) by developers from University of Virginia

4. Diabetes Burnout: Coping Tactics (Live)

5. When does a pancreas transplant (either a pancreas alone, with, or after a kidney transplant) realistically make sense, and all the other stuff your endo will NEVER tell you about how to do it (because chances are, he or she really does not know), where you can do it (there are like 36 centers nationwide, and numerous others abroad)

6. What does a CURE mean to patients, and why the ADA's 11-person "consensus statement" is an irrelevant exercise in semantics

So without adding too much, please visit Scott K. Johnson's blog posting today and leave comments for content you'd like to see addressed at the next annual CWD FFL Conference. Thanks!