Friday, May 13, 2011

Diabetes Blog Week Day 4: And Top on 10 Things I Hate About Diabetes Are ...

Before writing today's Diabetes Blog Week topic du jour, I actually read a fair number of my fellow PWD's blog posts (see HERE for all of them) on today's topic (see HERE for the entire week's topics, and for my posts from Day 1, Day 2 and Day 3).

Today's Assignment: Ten things I hate about you, Diabetes – Thursday 5/12: Having a positive attitude is important ... but let’s face it, diabetes isn't all sunshine and roses (or glitter and unicorns, for that matter). So today let's vent by listing ten things about diabetes that we hate. Make them funny, make them sarcastic, make them serious, make them anything you want them to be!!

Interestingly, avoiding injections was not top on anyone's list -- in fact, fingersticks associated with testing are/were much more consistently mentioned. Yet, to those who do not live with diabetes, that's ALWAYS what outsiders believe we all want. Venture capitalists and angel investors in biotech companies seem to believe it, too, and they've poured millions (billions?) into largely failed efforts. I wonder when they'll get a clue?!

Sure, a few people with diabetes noted that they're sick of all the piercing, pricks, injections and the like, but it's almost always part of a combined dislike for all the bull$#!t that goes along with this disease.

Here's a news flash for investors: before investing money, try actually speaking to people who live with the disease, and if the investment involves the hormone insulin or insulin receptor ligands as they FDA calls them (meaning analogues), you had better be dam sure that you have appropriate representation for people who live with type 1 diabetes, because we constitute at least 75% of all the current insulin users according to the U.S. Centers for Disease Control (CDC), even though we're probably only 10% of patients with diabetes because there is no other treatment option.

This brings me to one the ten things I HATE about diabetes. While Picking just 10 is really more like picking the worst of many evils, I am sharing 10 of my dislikes about this disease.

Top on my list: widspread ignorance among the investment community about what constitutes an "unmet clinical need" (I'll give you a hint: don't only speak to doctors about this!). Avoiding injections usually isn't on the list, except among the newly-diagnosed who have yet to realize that's the easiest part of managing diabetes -- really. Also on that list should also be any new drug or insulin that delivers marginal improvement in glycemic control (were talking a few basis points in HbA1c reductions). Sorry, that doesn't warrant a big increase in expenditures, either, and with healthcare budgets under incredible scrutiny on a worldwide basis, it might make for a tough sell, too.

A recurring theme that seems to be routinely written-off, ignored or otherwise dismissed as insignificant actually WAS avoiding hypos. That means insulin that cannot cause hypos. Beyond SmartCells (see my interview with the CEO HERE, which was recently acquired by Merck last December (see HERE), there's at least one Canadian company working on it known as Dibecore Medical, Inc. of Toronto, although there have been few details about the company's Hypoguard Insulin which was still in preclinical trials. I have no other knowledge about this, so don't ask!

Beyond that, in no particular order:

2. Doctors who say "we" when discussing MY diabetes. You know the statements "How is 'OUR' diabetes?" or "What are 'WE' going to do about this HbA1c?" Please. I see my endo for rougly 15 minutes every quarter. He may make a few suggestions, but unless he's going to take responsibility for when things don't go right, don't try and get cute and call it "our" diabetes, when we all know they have little real ownership for it.

3. I'm stealing this next one from Kelly at Diabetesaliciousness(TM):

Insurance companies who dictate how many test strips a person is allowed to use per day.
NEWS FLASH: Diabetes is not a one size fits all disease, nor is it the same disease two days in a row.
Some day require more testing, PERIOD.

And speaking of insurance companies - SCREW your pre-existing conditions clause.
Being an asshole is absolutely a pre-existing condition but being an @$$shole doesn't get you penalized regarding a pre-existing health insurance clause.
Look, you can't tell me that being an asshole isn't a pre-existing condition, because I know for a fact that it is.

4. This next one is for all of my fellow PWD's who think they have broken pancreases and keep saying this. Guess what, your pancreas still works, only your islets and beta cells are broken. The beta cells which make insulin (and amylin) actually constitute less than 1% of the mass of the pancreas, and while we're accustomed to thinking about it this way, glucose metabolism is NOT the only function of the pancreas. It does a lot for digestion, too!

5. I hate biosynthetic insulin and it's analogues. I've written about this in the past, so I won't bore you with it here, but let's just say that today's insulin analogues are no closer to human insulin than porcine insulin many of us used without problems when diagnosed, and there have been a number of comprehensive meta-analyses (in the UK, Germany, and Canada just to name a few) on the clinical trials for all analogues, most of which raise questions just how much better this overpriced, new insulin really is. Some people like it, and I'm happy for them, but I did pretty dam well on the old stuff, and have suffered from hypo unawareness since this fancy new shit arrived. The UK organization the Insulin Dependent Diabetes Trust (IDDT) has a boatload of data supporting the evidence the manufacturers tried to bury. (see my book review of Invisible Frontiers for more HERE) They pulled the old stuff off the market for one reason: fatter profits. Fuck you, big pharma. I can't wait for tons of new competitors to start eating your lunch!

6. Test strips, their lack of accuracy and high price tags. The manufacturers make a tidy profit on this strips that aren't even all that accurate. They do everything in their power to make excuses on why they can't, when we all know it's about potecting the bottom line. That, along with the total cost of being a PWD. I'm not made of cash, and for whatever reason, the medical profession seems to respond to diabetes management with a "money is no object" behavior. I cannot even get a freaking CGMS monitor covered, and I had to fight to get my prescribed number of test strips. Any bets on what you'll go through to get an artificial pancreas covered?!

7. Insulin "Pump Evangelists". I didn't make this term up, but suffice to say, it's not a term of endearment. Many people love their pumps, but just remember, it does not eliminate diabetes and it IS possible to do just fine on multiple daily injections (I do, as do many people in Europe who love their insulin pens). See HERE for more background.

8. Did I mention all the $#!t I have to carry around? WTF. I'd like to be able to go out without carrying a fucking suitcase once and a while, diabetes. (For more, see HERE)

9. The mass market media. Editors who cut key facts from stories about diabetes to fit a headline in, while perpetuating misinformation. Soundbytes for the dumbing of America and people whose primary information comes from watching Oprah (the Dr. Oz diabetes debacle was on her watch).

10. I'm stealing this one from George "Ninjabetic" Simmons (see HERE): I hate you (diabetes) for the fact that the person reading this either has you or someone they love has you.

So there you have it, and although I just made it before midnight, Google's Blogger was not cooperating (don't believe me, see HERE) so this is going up late! Seriously, work is really keeping me busy this week, and blogging, while I enjoy it, has required a genuine committment from me this week, but I really have tried to participate.

By the way, this isn’t diabetes-related, but I cannot STAND people who send me Facebook friend requests (who I don’t even know) and don’t have the courtesy of writing anything in the request. If we’ve never met face-to-face, and I don’t know anyone you know, what makes you think I want to add you to my list of FB friends? That’s called common courtesy, folks!

1 comment:

Sarah said...

I may have sent you a FB request w/o a personal note, so sorry about that. I love your blog and all of the research bits you somehow manage to uncover. Incredibly interesting and important to PWDs and those who care about us, but difficult to do that kind of research when it's not part of one's paid job. So, I'm impressed. Thanks for sharing it with us.