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diabetes 24-7

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30 January 2006

Pfizer Considers India as First Market

Pfizer considers country with largest diabetic population as breakthrough market for Exubera...USA will undoubtedly be first. No question.

29 January 2006

One Step Forward, One Step Back

Regarding the recent EU and FDA approvals for Exubera (insulin human [rDNA origin), Pfizer's version of Inhaled Insulin, here is my outlook:

1. Does it offer coverage for "Excellent Control"
By now the DCCT is a catch-word for how controlling diabetes leads to better outcomes. For any new product entering the Diabetes category this promise is mandatory/critical.

Unfortunately, there is no dosage precision with Inhaled Insulin ("The onset of Exubera is more rapid and its duration of action is similar to that of regular insulin.") Think back to a time before the pump, then go back a bit further to a time when injecting Regular insulin 30 minutes before a meal seemed a novel approach. (Early 1980's for me!) Exubera is packaged in single-dose blister packs of 1 or 3 mg (equivalent to 3 or 9 units of subcutaneous short-acting insulin, respectively).

Inhaled Insulin, in this regard is a step back for diabetes and precision self-management, and yet, a step-forward for mastering a whole new delivery approach that does not rely on injections. Hmmm...it occurs to me, we are just not there yet.

It is not all bad news, for some, Inhaled Insulin may be a complementary therapy to a T2 patient currently on once or twice-daily long-acting injectable insulins (Levemir or Lantus)who needs an additional lift to cover meals and post-prandial highs. It will be especially useful to those who cannot overcome the dreaded injections. Although, potential long-term pulmonary toxicity will have to be carefully monitored.

For me? Would I give up control close to par excellence with an insulin pump - No! But it won't be an option for anyone on the pump, and it certainly won't replace it.

Is Inhaled Insulin the new "Moses" product for diabetics today. Sadly no! Is it going to make billions for Pfizer and Nektar? Computer says no...

28 January 2006

FDA Approval for Exubera

Two Statements of Note: (click link in title)

1. "Exubera is the first new insulin delivery option introduced since the discovery of insulin in the 1920s."
2. "Inhaled insulin is unlikely to completely replace injectable insulin. But, for many people, it may greatly improve glucose control."

27 January 2006

Too Exubera-rant?

Pfizer's inhaled insulin receives EU approval; however, not FDA approval - although Pfizer CEO mispeaks and announces US approval... oops.

The Tipping Point

Whether you have had diabetes for a year or 30 – we all experience the same peaks and valleys of managing our illness.

I will now use a novel approach to describe how and why a “low” period begins… a low period can last for a day or a year (depending on the linear amount of time you have been living with diabetes).

It is called the Tipping Point. (There is a book, called The Tipping Point, and I have borrowed the term…) This is the definition:
In epidemiology, the concept that small changes will have little or no effect on a system until a critical mass is reached. Then a further small change "tips" the system and a large effect is observed.
I believe that for many people there is a moment when you are stripped down to your barest and most raw feeling about confidence in managing diabetes, and in feeling secure about the decisions you have made – both daily and long term. It is when all those “little things” about diabetes finally become, as said above – a critical mass.

What made me think about this exactly? Well, obviously my own experiences but mostly from an email that I read on the “UK Pumpers” support group. Someone who has had diabetes for 46 years (and pumping for 5 years) wrote to everybody saying that he had had enough. BG’s were bad, A1c was terrible and he was overwrought in having to deal with another unpredictable day. Nothing was working.

Man! (I don’t often use that expression) I am undeniably familiar with this emotional precipice! One of my greatest tipping points was at a time when I was in University. Things were not easily manageable, and I couldn’t come up for air. My A1c was abysmal, and I felt terrible. I didn’t want anything or anybody. I cried a lot of tears before I finally woke up. That was my tipping point.

The result of the tipping point is then making the decision that something radical must replace the current situation. Sometimes we make this decision wittingly – other times, sub-consciously.

Once the tipping point has past, whatever decisions come next – (and I find this the most draining!) is the shed-load of self-coaching and reassurance that can only come from within. It is this unbelievable and magnificent will of a person who just won’t let diabetes beat him. As for the e-mailer…I hope he resists any radical moves while in a “low period.”

Have you had a tipping point?

26 January 2006

Genomics and Diabetes Continued - Part II

After I sent an email to Marc Santora, one of the lead reporters on the New York Times Diabetes Reports, he graciously sent me one back letting me know that the New York Times would indeed be proactively following-up on the City epidemic. He also sent me this link, Gene Increases Diabetes Risk, Scientists Find. The New York Times was in fact doing their job! (I accused the NYT of having nothing substantial written on diabetes and genomics.) What I find most interesting about this article is the following statement:

While Type 2 diabetes is more common in African-Americans, Latinos, American Indians, and Asian-Americans, Dr. Stefansson said more studies were needed to see whether there were significant differences in the variant gene's distribution among races.

He said he could not yet say if the genetic variant was more common in African-Americans and so might explain their greater burden of Type 2 diabetes. But he noted that the variant was ancient, having arisen before the dispersal of modern humans from Africa some 50,000 years ago, and would probably be found to exist to varying degrees in all populations.
Wow...

Also today, and to keep you informed about media activity...the BBC has run a story about the New York City crisis and diabetes - New York City's Battle...

25 January 2006

Obesity and Diabetes: The Thrifty Gene



"Keep obesity silent.
Does it always make you laugh?
What kills 55,000 people a year in France.
It is not a fault, nor an inevitability.
Even less a joke."
French Campaign for Obesity

This French campaign gives a slightly different perspective than what we have seen over the past month from US and UK press machinations. Obesity, obesity, obesity...this is the new moral outrage. It is the "just say no" campaign for the 21st century. But instead of cocaine and herione, we're talking about fries and shakes. This organization, the CNAO (Collectif National Des Associations D'obeses), has decided to represent the obese and make a call for tolerance and education.

I found this image and the article in the New York Times early this morning. Inevitably, we are going to see news obesity reports from all over the world now that the NYTimes has declared it an epidemic in the City. And because the City is a micro-cosm of the world-at-large, reporters will be striking out to find news of obesity elsewhere.

What I found interesting about this article is that the lead into the story describes a child, Hakim, with a too high BMI. Hakim is an Arabic name. The New York Times reports on the diabetes epidemic interviewed many people, mostly Hispanic and African American people, struggling to manage diabetes. So, for the most part, Hispanic, African, Arabic, and Asian groups seem to be a large part of this focus.

Which leads me into one very critical scientific fact that NO ONE is discussing. (The New York Times dedicated three sentences to this fact. Appalling in that most of the above groups were their primary source. So in about 7 articles, spanning about 40 pages, this subject was given hardly a mention. Good journalism?)

Some people might dumb it down and call it a fat gene, but it fact there is a reason why all of these people are more susceptible to putting on weight.

CDC website on Diabetes
Many researchers think that some African Americans, Hispanic/Latino Americans, American Indians, Asian Americans, and Pacific Islander Americans inherited a "thrifty gene" which helped their ancestors store food energy better during times when food was plentiful, to survive during times when food was scarce. Now that “feast or famine” situations rarely occur for most people in the United States, the gene which was once helpful may now put these groups at a higher risk for type 2 diabetes.

This is Genomics - the study and function of our genes. Obviously this "thrifty gene" is not the only cause or factor. Depression and other factors do play a part here. But why oh why are governments constantly pointing to psychosocial issues as the primary cause? Why aren't we using more science - specifically as stated here, genetic factors, and of course, economic barriers. Is this all a part of the nanny state?

24 January 2006

FDA Response to Exubera - Inhaled Insulin - Expected this Weekend

By the end of the week the FDA will give Exubera the thumbs up or thumbs down for approval. Most analysts believe that the FDA will swing towards approval. See breaking news article today.

There are many exciting benefits that may come with patient use of Exubera. Perhaps the greatest is its method of administration. For millions of people having to not inject insulin via syringe or infusion set will be life-changing. Patient compliance will immediately increase. Like asthmatics, people with diabetes will be seen inhaling their pre-prandial or pre-meal “powder” shot. Parents with Type 1 children (or Type 2…these days) will feel a little less anger and helplessness that the littlest people with diabetes have a little less of a burden. Here is an actual sketch from Nektar, the company that developed the specialized inhaling system. (Go ahead, click on the icons next to the lungs to see how the system works.)

However, there are one or two other things you should know about Exubera: (For all you Infomaniacs…you will already know).

1. May only be used as a bolus. Exubera is a rapid-acting insulin (ideally starts quickly, finishes quickly). As said above, great news for all the T2’s who need a before meal shot to go along with their oral anti-diabetic meds. But the product doesn’t offer 24 hour coverage. Too bad.

2. Hypoglycemia is still at issue. Major studies have been done for years that have said lack of adherence to insulin regimens is directly related to fear of hypos. It can also be seen a different way. If you are a parent, what is your greatest fear if your child is on insulin therapy? All of you adult children of parents with insulin dependent diabetes, what is your greatest fear when “Grandpa” gets in his car to drive home after a family gathering?
And lastly, for all diabetes sufferers currently on insulin therapy, what do you hate most about the disease?Injections?
Not being able to eat candy?
Or waking up in the middle of the night in a pool of sweat, with impaired vision and an inability to communicate? (or on a mid-town subway car and one life-saver, or in an auditorium listening to your daughter’s first piano recital, or taking the SAT’s (USA) for the first time or your GCSE’s (UK) and so on.)

For me, hands down, insulin –whatever the administration - makes diabetes difficult. Full-stop.

Please remember, beef, pork, synthetic, even inhaled insulin is not a cure.

23 January 2006

Child of Our Time BBC series: Story of Jamie, 4 diagnosed T1

To answer the question whether we are born or "made," the BBC has produced this fantistic series. It follows 25 children all born in the year 2000. In 2005, one of the children, Jamie Craven is diagnosed with Type 1 diabetes.

Watch the show on the BBC's video on demand. It is a heart-warming snapshot of both the shock of the diagnosis to the parents and the child. It also shows how life continues - in spite of it!

Go here to see it. Once there, click on Video on demand option. Immediately click on TV Series button. Click on "Child of Our Time." Click on series 5. Click on "State of Play" - name of the episode.

Jamie's story is almost immediately first on - within first 5 minutes of the show.

20 January 2006

The Waiting Game: Diabetes Cure

I had such an intense response from a few people regarding my post "BBC Tonight - Cure 10 Years Away," that I felt compelled to dedicate this post (albeit a quickie) to those who left a comment...

The BBC story centered around doctors who are trying to perfect the transplant of insulin-producing clusters of pancreas cells (islets) into patients' livers. If the cells "take" they may enable the patient to make their own insulin, which would end a diabetic's need for insulin. And yes, this trial has been undertaken in various parts of the world since the 1980's.

Sono con lei!

I am with those of you that commented ("The cure was 10 years away in 1980" and "Islet transplantation...will NOT be a cure") - I am always hopeful that people will understand why I post what I do...it wouldn't be fair if I always spelled it out. As I have always been involved somehow in the diabetes "patient" network in some capacity, I am aware of patient cynicism and the media's attempt to revitalize very old news.

This news flash from the BBC couldn't be more stale, but is it their social/civil obligation to remind the public about the search for the diabetes cure? Obviously this story was forwarded to print media by the Diabetes Center at Oxford University.

For those of us living with diabetes, it is hard to understand how this is offered up to the public again and again as the solution. But in another vein (no pun intended), I am happy to see that the general public is occasionally reminded that insulin is not a cure and the search is still on. These are two very important points that get lost in most stories regarding diabetes.

Thank you for your comments. I will always respond directly to hot-button subjects in the future.

19 January 2006

Media Prize for Best Diabetes Story

For all writers/journalists out there with true competitive spirit, Novo Nordisk has instituted a Corporate media prize for stories written about diabetes related to awareness and education (non-scientific). The prize is aptly called “The Novo Nordisk Media Prize,” and is only awarded to lay media - aka print –not internet. Hmmm, I wonder why they are reluctant to include new media?

Judging Criteria: (from NN site)
The article must:
•be about diabetes (treatment, products, health issues and so on)
•be published in lay press (Print, national or local newspapers or magazines where the target is the general public)
•communicate about diabetes in an interesting, appealing and factually correct way.
My italics for "appealing" as it seems a strange word to use for criteria in journalism or a poor translation/language issue.

Apparently, there is a first tier National Round, and then all National Round winners go onto the International Round where the winner is awarded a “diploma” (?) and a 10,000 Euro prize award in September 2006.

For details on how to apply, see here. Read last year’s winner from South Africa, Justine Joseph’s article (Shape Magazine).

There is probably ample time to write and submit articles to “authentic” print media. What do you think of Justine’s parents? I was hoping for a story that was more inspirational. Not that it had to be about, "My Life with Diabetes and Walking the Hills of Kilimanjaro," but something a little less like an order of tuna on white bread. I was expecting Beef Bourgogne...but it is hard to find that in traditional media these days!

18 January 2006

BBC Tonight - Cure for Diabetes 10 Years Away

Islet Transplantation Trials (click link in title)
"The trials are taking place at a new £1.2 million facility funded by the Diabetes Research and Wellness Foundation (DRWF) based within the Oxford Centre for Diabetes, Endocrinology and Metabolism."

17 January 2006

Finding your Diabetes Team...

I have begun to use “D” now to refer to my diabetes. I learned this sometime ago from all my fellow diabetes bloggers. Saying "D" or "d" (depending on how the day is going!) is so much easier. There is something ethereal and fun about it.

But lately, I have been thinking about all the unseen challenges associated with diabetes. This morning, I had a low (hypoglycaemia) on the way to taking my daughter to school. I was still feeling shaky after I deposited my little one, and quickly tried to exit. A few other "Mums" and Dads stopped me – all commented on how tired I looked. I could have just told them I was feeling a bit wobbly. I didn’t.

I had a serious presentation to make the other day. At 3 am the night before, I woke up in a pool of sweat, and knew what I needed. I ran to the kitchen in the darkness reminding myself that if I just used 20 minutes that my body/mind would hardly know that I had sleep interruptness! I woke up a little puffy eyed with a high BG (hyperglycaemia: abnormally high blood glucose level, beyond the normal range (roughly 70 to 150 mg/100 ml of plasma). The presentation went fine… but would it have gone better? Did people recognize that I was a bit craggy?

I joined the UK Pumpers Group. It is fantastic. We met at a Wine Bar near Hanover Square called the Chopper Lump . At one point, everyone had their pumps on the table, comparing gadgetry and ooing and ahhing. It was an incredible image. (I should have taken a photo…)

I walked out of the Chopper Lump that night feeling great about my future and diabetes. It is a very powerful feeling to know that there are others in the life raft with you.

Gotta run now…I have another presentation tomorrow.

16 January 2006

Which type of Insulin Pumper are you? That is, in design and uptake?


Animas/The Sleek One - the Animas pump owner may own the Motorola Razor phone as well (However, Animas calculates carbs and tells you adequate doses/ and allows you to create a food database with favorite meals!) Could be a product for a real foodie!



Disetronic/J&J's Accu-check Spirit/ The Newbie, and as Spirit is a new entry into the Pump market, this user may be a bit of a risk taker. Carb database and planner with Zire Palm Pilot. Spirit Customer service will lend extra pumps for travel...I have heard!



The latest from Medtronic/MiniMed: The New Worlder (available in US, Canada and Puerto Rico)...also has the The Paradigm Link® Blood Glucose Monitor which has a wireless connection that sends readings to the pump automatically-Wow! Otherwise, people like me are using the old standby Medtronic 508/or 512's here in Europe.




Deltec's Cozmo = Practical/dependable and a Techie-at-heart. This pump is the only pump with software that allows you to download pump activity with CoZ Manager (that they actually make accessible to the patient!)

The most difficult thing about my quick search was I could not make out which pump is coolest for kids! Is there a parent out there who knows?

Do you agree with these descriptions? Have I left anything out? Should patients have a choice in which pump they use? Or is this to be left up to the insurers/doctors/healthcare programme - whether privatized or State?

15 January 2006

European Diabetes Stories -- How does it feel to make the switch? MDI to Pumping

Piotr Kalinowski is 27 years old who works as a journalist/press officer in Warsaw, Poland. Piotr has had diabetes since 1990, and has been taking MDI (Multiple Daily Injections) with various insulins for the past 15 years. I met Piotr through the Pumpers group here in the United Kingdom. We exchanged personal emails and I asked him if he would write a little bit about himself and how it felt to be put on the pump in his first few days. On January 10th , he went to his hospital in Warsaw to be put on the insulin pump and receive training on how to use it. Here is his story.

“For 15 years, I have had the same problem - high BG (Blood Glucose readings) in the morning. No matter what I did with my insulins (Humalog & Humulin N) it was always over 11.1 mmol! (200 mg/dL) My doctor said that Lantus could be a solution, but here, in Poland, the monthly cost of this insulin (Lantus) would be very similar to the monthly cost of the infusion sets and other materials required for a pump. Almost simultaneously, my ex-doctor and a friend of mine suggested that I should take a look at the (Accu-Chek Spirit) pump. So, I did, and I liked it! It's small, not too heavy, and it has a lot of features. The monthly costs are the same as Lantus. I decided to try & buy it. OK, it's not cheap, but there is always a possibility to borrow money from a bank.

Thank God when my family heard about the pump they promised to pay for it! So, it happened!

Before I switched to the pump I changed Humalog for NovoRapid (NovoLog). I read that Lilly's insulin can crystalize in cannula or infusion set. Besides, it doesn't work properly in high temperatures (I noticed this when I was in Tunisia).

On January the 10th I went to a hospital to start on the pump. And you know what? The very next day my morning BG was... 6.3 mmol!!! (113 mg/dL) A miracle? My daily BG's are very good, too.

Roche has let me borrow the pump for 3 months - I will buy it in March, 2006. For sure.

What is strange is for the first 3 days I missed my... injections! It is a strange feeling without them. For over 10 years, injecting insulin with needles at every meal was a part of eating and now it gone. Now, I hope the injections are gone - forever!

What can I say to my fellow diabetics? Don't be scared - try the pump!”

13 January 2006

Pfizer Buys Out All Rights to Exubera

Pfizer buys out partner Sanofi-Aventis for 1.3 billion dollars for global rights to Exubera inhaled insulin treatment.

This may mean:

a.) Pfizer has high hopes for this becoming their blockbuster
b.) Someone has received more good news recently for pending approval (other than September's news from the FDA)
c.) Sanofi-Aventis sold out - why? Investor pressure? Lack of confidence? FDA delays decision and extends review on Exubera...see October '05 story.

12 January 2006

There is hope...JDRF Discovers Link Between High Blood Sugars and Retinopathy

After almost a full week of the New York Times series on the diabetes epidemic, we all need some good news.

A group of researchers from the JDRF International Center for Diabetic Complications Research, led by Michael Brownlee, M.D., found that methylglyoxal (MG), a glucose derived molecule overproduced in cells damaged by hyper-glycemia, stimulates a gene (angiopoietin-2) which is key to the loss of small blood vessels in the retina (retinopathy) which leads to blindness - one of the worst complications of diabetes. The discovery helps explain the disease process of retinopathy and will enable researchers to develop new drug therapies for retinopathy as well as renal therapy - kidney failure, another major complication of diabetes.

There are two other pieces of information that make this article of interest:

1. Michael Brownlee, MD, the head of research for JDRF has had Type 1 diabetes since he was 8 years old. How is that for courage?

2. Complications linked to this molecule are also linked to the growth of cancerous tumors. Further research in this area may also lead to cancer-fighting agents that would aid in the destruction of tumor cells.

11 January 2006

The Forum: "Diabetes is like a Religion"

I just had to post a few of the letters that the NYT has posted on their email forum for their series on Diabetes this week. Here are a few of what I think are the best. Not necessarily because I agree, but because it really does sum up what the media doesn't ever hear. The voice of diabetes...not a staged one-off interview in a Harlem chapel.

From: kathleengriffin1 - 11:28 AM ET January 9, 2006 (#19 of 79)
Ignorance plus Bias equals Police State
"The new superstition regarding diabetes and obesity is leading to the proposal that diabetics be registered and monitored as public menaces. The New York Times knows it is promulgating a hysterical witch-hunt based on ignorance and bias. The image of a 400 pound person placidly refusing to lose weight and become perfectly acceptable, while draining the resources of the general public, is a caricature as bigoted as Thomas Nast’s racist cartoons. Diabetes is more often inherited than “caused” by overweight; onset can be delayed by diet and exercise, but no more than delayed; there are several forms of diabetes. In my case, all four grandparents from poor, thin, and physically hard-working farming or dock-working families contributed diabetes: Type I, Type II, and situational (stress or gestational). Careful behavior only delayed onset until 50. Like so many of the diabetics in NYC, I earn too much to receive free health care and not enough to have job health care..." (read more, go to the Forum.)

From: korsborn - 11:55 AM ET January 9, 2006 (#20 of 79)
Distinction
"Please, please distinguish carefully type I from type II diabetes. Genetics combined with an otherwise benign viral infection cause this autoimmune disease, not obesity, poverty, poor diet, or sloth. It generally strikes otherwise healthy, active kids completely out of the blue. Type I CAN NOT be controlled by diet and excercise because the insulin producing cells in the pancreas are completely destroyed, although a balanced diet and excercise are crucial to a healthy life, as for everyone. Without exogenous insulin, a type I diabetic would die in a few days, no matter how healty the diet or how vigorous the excercise because insulin is required for all organs except the brain to internalize glucose and therefore to function. Your article as written simply does not distinguish carefully enough between the two types, and potentially adds to the burden of misunderstanding a child with Type I has to carry..."

From: mooreas - 4:22 PM ET January 11, 2006 (#80 of 80)
Rich vs. Poor and the Healthy California Myth
"I found the map showing prevalence of diabetes in the city of New York interesting. The lower the socioeconomic status of an area, the heavier the shading in the prevalence code. A map showing yearly incomes within NYC laid on top of this map would be one more sad commentary on how so many people are left behind in this country. Preventive health care, affordable insurance, time for cooking healthy meals and exercising, even something as simple as a pair of gym shoes - all of this is out of reach for so many American citizens with no money or who have children and are working 2 jobs. The only action on this front seems to be the continual cutting in Congress of any glimmer of a program that might help poor people. I've got mine and no one else is gettin their paws on it - this seems to be the new national anthem, even though it will result directly in someone getting their paws on that money because we'll all be paying for a national diabetes crisis soon enough.
And I'm mighty embarassed for the person who stated "In California, we are more health conscious," as if that's true and as if to imply diabetes isn't be a problem there. This person actually seems to believe that high rates of diabetes sufferers is an isolated situation in NYC. Take a look at a diabetes map for California."

From: injectionsites - 2:23 AM ET January 10, 2006 (#43 of 80)
"In April I will “celebrate” my 65th birthday. My A1C is 7.1
I check my blood 8 - 12 x a day
I take 2 - 3 Insulin Injections a day. From head to toe, I measure 5’8” (172 cm) My weight is 172 pounds (1 pound / 1 cm) and last but not least, I HAVE NOT HAD ANY DIABETIC COMPLICATIONS……yet, after 22 years of Diabetes.
How I do it? ……I believe,
I know something about Diabetes
Last September we (our Hiking Club) went to PERU for 3 weeks to hike the “Inca Trail” and the highest point we reached (carrying a backpack of 45 pounds), was 16,000 feet and that for a 64 year young Diabetic, I think that is an achievement!
DIABETES IS LIKE A RELIGION; YOU BELIEVE IT……….AND LIVE WITH IT
OR ………YOU IGNORE IT,
- AS MOST PEOPLE DO -
AND DIE FROM IT
Take you pick ……Heart attack, stroke, kidney disease, blindness, amputation, it’s up to you!"

Diabetes Care: How do Hospitals Profit?

In today's article, the New York Times discusses how the United States Medical System is failing diabetes:

"Insurers, for example, will often refuse to pay $150 for a diabetic to see a podiatrist, who can help prevent foot ailments associated with the disease. Nearly all of them, though, cover amputations, which typically cost more than $30,000."

"Patients have trouble securing a reimbursement for a $75 visit to the nutritionist who counsels them on controlling their diabetes. Insurers do not balk, however, at paying $315 for a single session of dialysis, which treats one of the disease's serious complications."

"Not surprising, as the epidemic of Type 2 diabetes has grown, more than 100 dialysis centers have opened in the city."
Priorities are all wrong. It is the twisted twilight zone of capitalism. In a post I wrote in early December (Nice: England's Clinical Guidelines) I asked whether the USA was more advanced than Europe in diabetes care. Then, I believed it was. Now I know the reverse is true. Europe offers a better standard of care. Not perfect. But better.

10 January 2006

The New York Times Continues it Special Report on Diabetes...


Today, the New York Times continues its special report on diabetes and the City. The paper is now including a 3-Part video series on 1. Journalistic perspective on investigaing the disease for a year 2. Special interview with a patient and 3. Focusing on the Russ Berrie Diabetes Center at Columbia University and why there are only a handful of centers offering comprehensive care in the Unites States.

(This is all too true; I was a patient of the Mount Sinai Diabetes Center, Upper East Side of New York, which closed down in 2001-2002.)

Take a look if you have the time (about 10 minutes) to watch the videos. What I found to be most interesting was the following quote regarding why there are so few comprehensive health centers for diabetes patients:

Hospitals make money on the operations needed for amputations and lose money on providing resources for how to avoid complications/teaching self-care. Hospitals make money on gastric bypasses and lose money on providing nutritional programs for patients...
My hope is that the Times will also dedicate some time to the industries that profit from the "epidemic."

For UK Readers, The Guardian is reporting on this today as well.

09 January 2006

New York Times Today: "Diabetes and Its Awful Toll..."

08 January 2006

Two Amazing Athletes...



Kris Freeman and Adam Morrison
Two Amazing atheletes...in the news recently. Read their stories.

06 January 2006

Newly Diagnosed T1 Child -- Life Expectancy in Third World: 0.6 years

There are all kinds of barriers to access for managing diabetes. Some barriers may be geographic, others may be economic, while many barriers are due to the lack of information available. (And this may be frustrating for patients, providers and products in that sometimes they just cannot find each other). Finally, in some areas, it is a combination of all three. Like Mozambique and Tanzania and other developing countries around the world.

Barriers may exist because state governments may not have dedicated enough funds or resources to cover the population or assist their health service teams, see BBC news story. Or barriers may exist because low-population rural infrastructures cannot finance adequate healthcare resources which may be more readily available in urban areas, see US Dept of Health Report.

What is most shocking are statistics such as this one from an October 2005 Letter to the Editor from the British Medical Journal. Because access to insulin and care is so inadequate:

“the life expectancy of a child with newly diagnosed type 1 diabetes is only 0.6 years in rural Mozambique.”

This letter was written by David Beran, Project Coordinator of the International Insulin Foundation (IIF). Headquartered in London, the IIF’s Mission is to:
to study the problems that patients face accessing proper care and insulin for their diabetes in developing countries and create sustainable nation-wide access to affordable and reliable sources of insulin through projects that improve distribution and the educated use of insulin by people with Type 1 diabetes currently unable to obtain it.
The IIF's original study is here. Their objective was to assess the barriers to care for patients with insulin-requiring diabetes in Mozambique and Zambia.

Africa is used as a pulpit for how it represents humanity's failures; I believe that any hindrance to healthcare for a treatable disease is criminal whether it is in Mexico City, New Orleans or Nairobi. Consider the following:

1. Globally there is no shortage of insulin production. The above stat is a reflection of how truly far out-of-hand humanitarian efforts are when competing with the buying and selling of goods, not to mention corrupt government policies. It could be the exchange of rice, infant formula, bandages, condoms or insulin.
2. Without insulin, diabetes is fatal for T1's and T2's end-stage. Our access to this commodity (I think it has become one) is assumed and therefore, insulin is to diabetes what aspirin is to headaches. The need to replace insulin and find a cure is only truly desired by one population – IDDM diabetics and their carers. Otherwise, the need is not perceived as desperate. (Necessity, who is the mother of invention. Plato (427 BC - 347 BC))
3. Is there a way to communicate the seriousness of diabetes better? Who for you collectively represents the voice of diabetes best?

05 January 2006

Norwegian Doctors Discover New Form of Diabetes

"In addition to high blood sugar levels, the disease is characterised by a decrease in pancreatic functioning and reduced fat absorption in the intestine. The discovery may have an impact on the treatment of more usual forms of diabetes."

FDA, Glaxo warn Doctors about Diabetes Drugs

From now on, I will always post important diabetes news and save commentary for my own posts.

Have you heard of DAFNE?

Dose Adjustment for Normal Eating or DAFNE is a Nationally funded programme for people with T1 diabetes. The DAFNE slogan "Like what you Eat/Eat what you Like" reflects the heart of the programme which is teaching people how to adjust insulin to food (rather than the other way around):

"Participants acquire the skills and confidence to adjust insulin to suit their lifestyle rather than being told to adapt to the timing and content of meals to to fixed doses of insulin"

By counting carbohydrates and adjusting insulin to match (as well as maintaining normal blood sugar levels without food intake) a person may embark on a whole new world. During the 5 day course, attendees learn the skills involved in insulin adjustment without guess work and have many opportunities to practice.

I have been counting carbs for 30 years, but I may sign up for this.

The DAFNE programme was developed by Michael Berger, a diabetologist in Germany during the 1980's and then adopted throughout Europe. After assessing the evidence-based study, the British Medical Journal published its findings and then the NHS (National Health Service) via NICE (National Institute for Clinical Excellence) adopted the programme. DAFNE supports the NHS rationale that patient education is a central part of treatment in diabetes. Sounds good so far.

I am going to try attend a course and report my findings here. In the meantime, I am curious if anyone in Continental Europe, Asia or the US has attended a similar workshop.

There is also a programme that is being trialed here in the UK for T2 diabetes patient education called DESMOND (Diabetes Education and Self Management for Ongoing and Newly Diagnosed.) This year the trial ends and a report should be ready for press review.

04 January 2006

Quality of Life (QoL): Are patients speaking the same language as doctors?

One of the primary reasons there is such a great abundance of weblogs on living with diabetes is how it affects a person’s Quality of Life (QoL). This is also a term used frequently in scientific research and in studies which assess clinical outcomes in chronic disease. Diabetes is at the forefront; many researchers are trying to figure out the relationship between a diabetic’s QoL, their health status, avoiding complications, and helping doctors to manage compliant versus noncompliant patients. My question is: What comes first? The chicken or the egg?

A simple definition for Quality of Life is a person’s ability to enjoy life and pursue happiness. A Health Care Provider (HCP) or scientist may view QoL in a different way. QoL as defined by the CDC goes something like this:

“to measure the effects of chronic illness in their patients to better understand how an illness interferes with a person's day-to-day life…”

which may be important in determining which treatment option is best. "Treatment option" is key here, because after dx, a doctor is skilled mostly in a broad capacity to prescribe. Whether or not the doctor takes QoL variables into consideration is the luck of the draw. I believe most HCP’s define QoL purely as a question of physical status, ie, vital stats. Many HCP's infer that impaired health leads to impaired Quality of Life and excellent health leads to an excellent Quality of Life. See Article. My blood sugar control may be on target, but regardless of my well-being or “high” health status, my QoL is perceived by me to be somewhat low. This is why we all would sacrifice many things in our lives for a cure. Right? I would argue that a person’s access to relevant information, power to choose best treatment plan, and an ability to self-coach, negotiate and resolve issues daily with a chronic illness are all strong indicators of a more positive health status, but not necessarily indicators of an excellent QoL. For individuals, what is the best way to define QoL? And is QoL an indicator of positive medical outcomes? Or is our Quality of Life adversely affected by diabetes regardless of medicine (well..obviously not discounting the fact we are still alive!)? And finally, is QoL an indicator of a diagnoses for diabetes to start with?

What are your thoughts on how to assess Quality of Life and living with diabetes? There are millions of papers out there…some good, some not so. I have listed a few below. More importantly, I am attaching one of the most widely used QoL Assessment Tests for patients with diabetes. It is called the SF-36. Take it for free here and get an immediate score and interpretation. (Fill out the log-in registration -- it will just take a few seconds). My score was: Physical = 56 and Mental = 53 out of 70. What does it mean really? “That I am doing better than most ….”

Articles you may want to check out:
UKPDS 37
Interpreting the SF-36
One group of doctors noted that the SF-36 made modest gains in positively impacting the medical outcomes of patients’ HbA1c and so they made two additions to the the questionaire here.
Another test for young adults with diabetes ADDQol (no online testing available)

03 January 2006

The Pump Wars

Today, people with diabetes can make all types of decisions about the products they use. I remember when one type of insulin made my arms all red and pimply and, at 16 years, I begged my doctor to change it - he did. I have used EVERY type of glucometer on the market, and now I am back with an old favorite. Is it the convenience factor that keeps me on the look-out for the next best thing? Perhaps. Now there is a choice in what type of pumps are available. A relative of mine recently made a comment that he thought I was on a pump because I was so very ill and "only the most severe patients are on pumps." I thought about this for a few seconds and then reworked his statement to go something like this:
"only the best doctors put their most capable and eager insulin dependent patients on pumps."(one caveat: many people who still have insulin produced by their pancreas (T2's for example) cannot go onto the pump...and obviously there are many reasons why pump therapy may not be chosen)
Insulin pumps are hard work. They do not manage themselves. Vigilance is key. But the freedom and better HbA1c's are well worth all the work. For all you non-pumpers out there, an insulin pump is a virtual pancreas. It is as close as one can get to the real thing ... on the market.

Which is why I am writing this article. I belong to the UK Pumpers group. Over the Christmas holidays, one of our member's pump had not been delivering insulin. The pump -- which would normally alarm - did not warn her. Because of the holidays, no one was available on the 24 hour line from the pump company. This includes 2-3 days after Christmas. She alerted everyone in the group and asked them for their recommendation. (I won't mention the company here until I get their response.)

This brings me to my next line of thought: pumps are not like broken washing- machines or cars. People on pumps can't just que up for service once business resumes. These little machines are our life-lines. And switching off to another insulin is not as easy as it sounds. Insulin pumps can give as many as 450-500 constant calculated "amounts" of insulin. No injectable insulin can replace that.

Which is why I think that service, reliability, comfort, ease, efficiency and all the well-known product superlatives should be graded by US - the patients. Next week, Piotr Kalinowski, 27 years old (T1 for 15+ yrs) who resides in Warsaw (Poland) will be trialing the Accu-check Spirit Pump (click on Accu-check Spirit and check out the ultra intro with Soave runway music (?) ) and will write about his experience here. I will post my experiences with Medtronic and I am calling on anyone who would also like to contribute. I would also like to hear what products (any and all) you think deserve a best rating and why...

02 January 2006

At a Distance

I rarely write personal accounts on my blog, but I will today.

Christmas 2005 was uneventful, and yet (aside from my gregarious and absolutely yummy 5 year old daughter’s wide-eyed grins and antics!) -- difficult. I spent Christmas with a Type 2 relative who stayed here in London as a guest in our home for the holiday.

It was difficult because I could see how diabetes is killing him. I read the prescription on his insulin vials which he kept in my egg container compartment of the fridge Lente insulin twice a day – 30 units in the morning and 10 units at night. In fairness to him, it is not an easy regiment to follow and is rife with hypos if mealtimes are not kept on routine. Obviously, this is even trickier if travelling abroad. I asked him about other treatment options. We had a short discussion on how his health insurance in the States was on a formulary system which would only give him other treatment options if he failed on the lente.

All at a distance, I watched his eating and drinking habits. Not good. I saw mood alterations. I watched him having a very difficult time at mobility, as we took short walks around London Parks -- which for a 65 year old man in the Noughties should be a pleasure not a task. I tried to discuss things in an intellectual manner, and also pleaded with his son (my husband) not to leave the Christmas cookies in plain site. My husband responded rather surly by telling me it went against all my own personal philosophies of self-management – ie, to deny and forfeit goodies, thereby treating the diabetic like a child. I agreed, but stashed them away anyway.

I was kept up at night by his wanderings around the house and his use of the bathroom at all hours of the night. I asked his wife, my daughter’s grandmother, what his “number” is. She responded by telling me his numbers were good.
"No,” I said, “not numbers. How is his A1c, his glycosated haemoglobin?”
“Never heard of that one.” she said.
“It should be around 7. Listen, find out what it is, because it is the best indicator of his health status.”

She said OK. But I never heard anything more about it. They went home. My daughter, their grand-daughter – was sad. She won’t see them for awhile. I know she will never forget taking her grand-mother and grand-father to the London Eye; they all watched the world as they loomed around from a rather unique distance. But I wonder how many more visits we will actually have with her grand-father. Triple by-pass surgery, peripheral neuropathy, autonomic neuropathy, and enzyme problems with digestion all make it a very heavy case.

I absolutely failed at helping him. However, it has led me to more closely look at the reasons why people with diabetes fail at self-management and seek isolation. My father-in-law watched me take my blood sugar at every meal. We could have done it together. I didn’t want to ask him where his glucometer was – but maybe I should have.

This personal issue of compliance and why it is such a huge problem for so many people with diabetes is going to be at the core of many of my articles in the future.
On another note, and to follow-up on my post("Who is the Leader of the Sugar Police in NYC") regarding the NYC Department of Health, I received this email:
Dear Elizabeth,
Thank you for for e-mail to the NYC DOHMH. Although the A1C registry has great potential to improve the quality of care and quality of life for people with diabetes in NYC, I recognize your legitimate concerns and will take your comments into consideration as we move forward with the initiative.

Diana K. Berger, MD, MSc
Medical Director
Diabetes Prevention and Control Program
New York City Department of Health and Mental Hygiene dberger@health.nyc.gov
(Tel) 212-676-2157
(Fax) 212-676-2161

2 Lafayette St.,
20th Floor: CN # 46
New York, NY 10007
With the knowledge of NYC’s desire to achieve better healthcare outcomes with difficult diabetes cases and post-visit with my in-laws, now I am not so sure it is such a bad idea after all.