BBC Reports: Child Diabetes Cases to Double

Yesterday the BBC reported:

The number of under-fives in Europe with type 1 diabetes is set to double between 2005 and 2020, say experts.

The BBC report is here. The original source for the BBC was The Lancet who published an early online edition (yesterday) of a multicentre prospective registration study on the increase in childhood (Type 1) diabetes.   In their summary statement the lancet reports:

The incidence of type 1 diabetes in children younger than 15 years is increasing. Prediction of future incidence of this disease will enable adequate fund allocation for delivery of care to be planned. We aimed to establish 15-year incidence trends for childhood type 1 diabetes in European centres, and thereby predict the future burden of childhood diabetes in Europe.

The study made the following interpretation:

If present trends continue, doubling of new cases of type 1 diabetes in European children younger than 5 years is predicted between 2005 and 2020, and prevalent cases younger than 15 years will rise by 70%. Adequate health-care resources to meet these children's needs should be made available.

No cause for the increase was cited, although modern lifestyle factored, and an increase in children born to older mothers, caesarean sections and reduced exposure to germs are all thought to be contributing factors.

Defining Diabetes (with Sotomayor)

People are worried about Mrs. Sotomayor's diabetes because no one understands diabetes.There I've said it....finally.

I may not live in NYC anymore, but I did for awhile even though I have been in exile for many years in Europe, now Asia.  I worked in Manhattan, was married there and my only daughter was born there, so I feel I have a few rights when it comes to making comments about our newly nominated Supreme Court Judge and Nuyorican, Sonia Sotomayor.  She has Type 1 diabetes, you know (say it with a whisper).

What an interesting time for Advocacy Groups whose main focus is to facilitate awareness, information and education about diabetes and patients (with diabetes).  I guess Sotomayor had no choice but to consent to the (Judicial) Investigative team to contact her doctor and other experts.  Right?  And we all know diabetes can make you ornery and fractious, so giving her behaviorial clearance made some sense too.  Didn't it? 

I found all this information in this morning's New York Times, near the bottom of the full page headline story for Sotomayor.  I get so excited when the New York Times discusses diabetes on the front page or on the 30th for that matter.  It happens so rarely that I often wonder if anyone is really working their day job in PR for the national and international diabetes organizations.  

To dispense with any health concerns about Judge Sotomayor, officials said the White House contacted her doctor and independent experts to determine whether diabetes, which she learned she had at 8 years old, might be problematic and concluded it would not. The Obama team also interviewed colleagues on the Second Circuit to check out reports that she was difficult to get along with, and was reassured it was not true.

Diabetes may be the least interesting aspect of this formidable woman.  She was born to Puerto Rican Working Class immigrants who settled in the East Bronx, she attended Princeton and was by all accounts, socially isolated by her peers, but pulled through and went on to Yale Law in the early 1970's.  She wrote her way onto the Law Review with her deep analysis and social concern for the poor, especially Puerto Ricans and American minorities.  Professionally she is an "imposing prosecutor" and a "legal dynamo" who has several notable cases under her belt addressing civil and religious liberties.  Read the times article for more....

But I am interested in how diabetes advocates and highly regarded media forums are DEFINING what's at issue at all with this latest tassle...

Time Magazine hasn't a clue what diabetes is, so goes cute and slightly, off color, here: HER DIABETES, Will it be a Handicap?
Handicap is defined by Merriam-Webster's as  a disadvantage that makes achievement unusually difficult bsometimes offensive : a physical disability

The New York Times uses the term illness one day and then "health concern" to describe Sotomayor's eligibility problem but nothing else, steering clear of any precise terms or language, except for the magic word (diabetes).

 JDRF does by far the best, at least they are calling it something people can sink their teeth into...an autoimmune disease.

The American Diabetes Association is having some trouble overusing the term...

"In the days leading up to this nomination, there were several media reports suggesting that Judge Sotomayor should not be considered for this position simply because she has type 1 diabetes," said R. Paul Robertson, MD, President, Medicine & Science, American Diabetes Association. "The advancements in the management of type 1 diabetes have been just amazing over the last two decades and the ability of people to manage their diabetes successfully has been proven. People with diabetes can function and live a long and healthy life."

Huh, what?  If the media is looking for information, where are they going? Help! And we wonder why so many people are confused and uninformed. I'll say it again...people are worried about Mrs. Sotomayor because no one understands diabetes.

Retinopathy Free...Again!

Every year I go to have my eyes checked out for glaucoma and retinopathy.  Before I go, I always have a plan for dealing with what I MIGHT feel if they do detect some change for the worse.  Symptoms in Nonproliferative Diabetic Retinopathy (NPDR) are rare, which is why I feel nervous.  NPDR is silently invasive, which is why it frightens people... like me.  

NPDR (Non-Proliferative Diabetic Neuropathy)

When NPDR begins, blood vessels lining the wall of your retina weaken.  These vessel walls may bulge leaking or oozing fluids, and are called microaneurysms.  As the retinopathy progresses smaller vessels may close up, and the larger retinal veins may dilate because of this.  Nerve fibers swell as well, and when it gets so bad that your macula begins to swell too - it is called macula edema.  

PDR (Proliferative Diabetic Neuropathy)

After this, you're on to PDR.  Symptoms in the later or proliferative stage are recognizable and include: 

Spots floating in vision

Blurry Vision

Dark streaks or a red film blocking vision

Poor night vision

Finally, blindness

RISK Factors 

Poor Blood Sugars

High Blood Pressure

High Cholesterol

Pregnancy

Smoking

I remember a year ago in London, I met a wonderful musician who was 18.  She had Type 1 since she was a young girl, and lost her eyesight in her mid-teens.  I was truly shocked that something so serious and preventable had happened to such a young person - her whole life in front of her.   Sometimes we focus on the cure, when we could be reminding ourselves to focus on today, and what plans or treatments we can utilize (right this minute) for a longer BETTER life.

GOLD STANDARD: OmniPod Insulin Management System

I desperately want an OmniPod. The tethering of the Medtronic insulin line has lost its appeal; I no longer fancy being perceived as the bionic woman whose wires have popped.

But I live in Hong Kong, and access is a problem.  The real irony here is I AM SURE parts for the OmniPod come from China. Ahem. Here is a quote from the Insulet's Corporations Press team, dated March 16, 2009.

the concentration of substantially all of Insulet's manufacturing capacity at a single location in China and substantially all of Insulet's inventory at a single location in Massachusetts;

And last year from Duane M. DeSisto – President, Chief Executive Officer & Director
Looking ahead to 2008, our plan is to invest in the business both in the manufacturing and sales and marketing infrastructure. As we continue to see our manufacturing capacity in China come on line successfully we will invest in additional capabilities that will allow us to exceed our original manufacturing production goals.

Care and access have been difficult in the other countries where I have lived (UK, Italy), but China is the worst of the three.  And I suppose I am amused by this.  Everything is made in China.  So while companies work hard to get affordable (international) labor/international contracts, they struggle in acquiring international distribution lines. Here is my most recent correspondence:

Dear Insulet/OmniPod Executive

I live in Hong Kong, but I am an American citizen here for a contract term of 2 years. I currently use a Medtronic Insulin Pump, and have for 10 years. I would like to make a change and have been authorized to purchase a new one from my insurer. Is it possible for me to become an OmniPod user here in Hong Kong? I hope so.

Look forward to hearing from you.
***************

Dear Elizabeth,

Thank you for your interest in the OmniPod System. We are working hard
on introducing the product around the world but at current time,
Insulet Corporation cannot market outside the US or ship product outside the
US. We will keep you informed about our progress in Asia.

Best Regards,

-Jxxxx

Insulet Corporation
www.insulet.com

It occurs to me and always has that the USA Market offers the best diabetes product support, and it is a bitter pill to swallow waiting for technology to circle the globe.  

How to Buy an Insulin Pump in China

And you thought it was hard in the West?

Cash or credit is important.  Payment plans are available.  The training is a little meagre (translation may be necessary)... lots of miming, smiling and head nodding up and down or across from side to side.  I don't speak enough Cantonese, but get by.

It started that way too when I lived in Rome although it was far easier to learn Italian than it will be for me to pick up Cantonese or Mandarin.  The Italians always offer a cappuchino or fresh juice as a way of breaking the ice and comforting a guest upon meeting...even at the doctor's office.  The Chinese offer you hot water (the heat kills the bacteria), and they begin speaking from the memorized English descriptions of the products they are selling.  It is impersonal, yet efficient.  Usually doctors abroad get involved at an arm's length in such matters.  Purchasing and training are not done by them initially.  It is an ethical matter.

The fact is when you live (rather than visit) a foreign country with diabetes, you have to have to be willing to make mistakes, try a lot of different sources and be patient.  A sense of humor helps.   It takes time, and process is slow.  It can be lonely.

My Medtronic Pump is off warranty (4 years).  It is a number 512.  It has been to Cairo (heat), Bali (tropics), and to Sydney (end of the earth) plus a number of cities in-between.  It has never broken down, cracked, or malfunctioned.  But it is time to purchase another.  My insurance coverage has authorized me to proceed.  But I am alone in facilitating this purchase.  My doctor here has one patient on a pump... and that's me.  He's learning a lot.

The next step up is a Paradigm Real-time Pump. Medtronic is the only company that is authorized for distribution in China.  Living outside of the USA, I must personally research what is new on the market for diabetes pump therapy.  The USA is always the first to launch anything new... having the the greatest number of patients with the purchasing power for products.

The southern China distributors for Medtronic carry about 200 other types of durable items for patients in several categories: heart, lung or geriatric care being more profitable.  There are 40 people in Southern China who use an insulin pump. (More people live in China than the entire USA).  Northern China has another distribution office for insulin pumps.  But the demand is not here; pen therapy is utilized by the diabetes population.  Novo Nordisk does well in China.

The Paradigm 522 insulin pump looks just like my old one, but I have been authorized for the CGM (Continuing Glucose Monitor) and sensor.  It is exciting news.  More control, more accuracy which all equals less risk of complications down the road.  It allows me to better manage my blood sugars on a daily basis. I get the whole picture of how I am doing because I have more information.  

But my contact at Medtronic's distribution office, Mr. Tse had some bad news.  Neither the sensor nor the transmitter have arrived.  He's not sure when they will.  Furthermore the HK Government has not approved the radio frequency necessary for the pump and the sensor to communicate. 

 

"The frequency is there though...the transmission may not always work, but will sometimes."  

"Does someone else use it here?"

"One lady in China, across the Hong Kong border."

I left the the 21st floor of his office in Kowloon, thinking about what to do next. I had my work cut out for me.  I would have to get more involved and call the Medtronic headquarters in California.  There would be many steps in this process.  I needed to figure out where to get training.  Where there's a will there's a way.

Moving on with Progress?

What is the one aspect of diabetes that can be counted on for progression? Population. Numbers.
The chart I compiled above (click to enlarge) reflects both the nature of diabetes as a public concern in a handful of countries as well as representing the geographical nature of my life over the past 15 years. Today, I live in Hong Kong, but I also lived in London (as well as other European cities) and New York. I am a Type 1 who in the recent past and today represents one of those numbers in each location. I was curious about the different aspects of diabetes in America, Europe and Asia. The commonality of the data and percentages are surprising. In the Type 2 column, the numbers easily showcase that Asia, who has adopted a more modern, sedentary lifestyle – rich in high-fat sugary foods – is feeling the effect of the Type 2 surge. But there are also other important generalities that are often forgotten in the PR blitz that pervades everyday news. Google news alerts spell it out pretty clear day after day....diabetes costs, pharma profits, community awareness, dieting, dietary and more diet fads, theories and studies! Where are the numbers going? What do they mean? How large does the diabetes population have to grow?

1. The chart displays the well-known disparity between Type 1 population numbers (small) to Type 2 population numbers (huge). It has been known scientifically that Northern Europeans have a higher incidence of Type 1 which may account for the UK’s higher percentage. And the thrifty gene hypothesis upholds higher numbers in places like Asia, and Latin America. (It does not account for the undiagnosed which would increase populations by at least a third).
2. It reflects how an insulin pump, which “provides the closest match available today to the way a body would normally deliver insulin… and results in better diabetes control...” (Joslin) is accepted but not fully put into practice. I would argue this therapy is best for insulin dependent Type 2’s as well.
3. It demonstrates the need for better diabetes morbidity data since the numbers above don’t account for diabetes as the underlying cause in death when heart disease, or kidney failure do...
4. The numbers beg the question why global/political commitments to screening, care and research are sub-standard.