What Prevents the Risk of Diabetes Complications? Intensive Therapy and the Means to Sustain It.

I must admit I am perplexed by the new study findings from the Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications (DCCT/EDIC) Research Group which comes on the heels of the DCCT Study. I am perplexed for two reasons.

This study set out to understand the LONG-TERM effects of intensive therapy for Type1 DM over a 30 year period versus the older DCCT study which looked at intensive therapy (maintaining a HbA1C not >6 or as close as possible) for ten years 1983-1993. The new study concluded that frequencies of serious complications in patients with T1DM, especially when treated intensively, are lower than that reported historically.

Firstly, I find it puzzling that EVEN with meticulous care, people who have Type 1 diabetes for 30+ years will suffer from complications; 22% of patients have proliferative retinopathy* (roughly 1600 patients in the study, gives a number of about 350.)

Here is what the Archives of Internal Medicine reported yesterday:

This study describes the current-day outcomes that patients with type 1 diabetes can expect with conventional therapy and intensive therapy.After 30 years of diabetes, 22%, 9%, and 9% of intensively treated patients developed proliferative retinopathy, advanced nephropathy, and cardiovascular disease, respectively. Fewer than 1% lost vision (<20/200), required a kidney transplant or dialysis, or had an amputation because of their diabetes. The remarkable improvement in long-term outcomes should inform clinicians and patients alike to implement intensive diabetes therapy as early in the course of diabetes as possible.

I would expect the outcomes to be a little bit better. This perplexes me. (I am a type 1 in my 34th year without complications; I manage by intensive pump therapy but for 20 years I was managing with 1 or 2 shots a day in the 1970s and 80s).

But I get the essential public service message. There is a lot of work to be done to help patients AND doctors (endocrinologists specifically) understand the importance of intensive therapy. What is intensive therapy? It is either pump therapy or multiple injection therapy with analog insulins and testing blood sugars at wake-up, bedtime and before each meal, scheduling doctor's visits at minimum 3-4 times a year, and having an HBA1c test coinciding with visits. There is a lot of mindful work involved, a lot of supplies, a lot of visits to doctors (including an opthalmologist) and most importantly, a lot of money to cover the therapy. This last item concerns me. Does every child or adult with T1DM have insurance coverage or cash/credit to cover the expenses? Probably not. But the study tells us to implement intensive therapy as early as possible for any chance of success.

What really perplexes me is that a great deal of money (even if one has good medical coverage) is required to sustain the recommended intensive care. I find that the study outcome is not surprising. It is perfectly clear that intensive therapy is the best route if you have T1DM and would like to live a long life with the lowest risk of diabetic complications possible. That was made very clear by the first DCCT. Since then analog insulins have been introduced, pump therapy has become mainstream and blood glucose monitors and other technical gadgets (CGMS) are superior and have become more and more sophisticated. So much so, that I am always reluctant to buy the latest diabetes gadget thinking I should wait until something better comes along ... just how I feel when I buy a computer or a mobile phone.

And just like updating my digital home office or child tech goods/games, it all costs a great deal. Here is what it would cost anyone newly diagnosed at entry point and for 3 month supplies to manage intensive PUMP therapy or multiple insulin injection therapy (in cash).

Pump $6000 (one time cost) under warrenty for 4 years
GGMS 650 (one time cost) lasts for one year
Blood Glucose Monitor 100 (good for 2 years)

Sensors for CGMS $1050 for 10 (350x 3 for 3 month supply)
Insulin (rapid) 400
Infusion sets for pumps $400
reservoirs 150
glucose test strips 450
Lancets 20
alcohol pads 15
batteries 20

Syringes (4-5 times per day) 280 $150
Long acting insulin 300

PUMP Therapy
One time costs (1 - 4 year(s)) $6750
3 monthly supply $2505 (minimally)

Multiple Injections
One time cost (BG monitor) 100
3 monthly supply $1400 (minimally)

Doctors and patient organizations rant and rave about the importance of intensive care but at what a cost! I think we have all acknowledged the 10-30 year studies. Now all we have to do is work together to ensure that intensive therapy is available to all - not just to the lucky who either have medical coverage or the means to sustain it.

The US News and World Report article on the study's findings ends with Barbara Araneo, director of diabetic complications for the Juvenile Diabetes Research Foundation:

'The bottom line, she said, "is that there's always something you can do about diabetes. It's not hopeless.'

I veer away from double negatives to reach an affirmation. There is always hope (for everyone) sounds much better to me.


*What are the stages of diabetic retinopathy?
Diabetic retinopathy has four stages:

1.Mild Nonproliferative Retinopathy. At this earliest stage, microaneurysms occur. They are small areas of balloon-like swelling in the retina's tiny blood vessels.
2.Moderate Nonproliferative Retinopathy. As the disease progresses, some blood vessels that nourish the retina are blocked.
3.Severe Nonproliferative Retinopathy. Many more blood vessels are blocked, depriving several areas of the retina with their blood supply. These areas of the retina send signals to the body to grow new blood vessels for nourishment.
4.Proliferative Retinopathy. At this advanced stage, the signals sent by the retina for nourishment trigger the growth of new blood vessels. This condition is called proliferative retinopathy. These new blood vessels are abnormal and fragile. They grow along the retina and along the surface of the clear, vitreous gel that fills the inside of the eye. By themselves, these blood vessels do not cause symptoms or vision loss. However, they have thin, fragile walls. If they leak blood, severe vision loss and even blindness can result.

TEAM TYPE 1 WINS RACE ACROSS AMERICA

In record time, Team Type 1 finished in 5 days 9 hours and 5 minutes in the eight-rider team division of the Race Across America! Way to go! Congratulations!

GO TYPE I Diabetes Team!

The race is over 3000 miles, and the cyclists move through 14 states and climb more than 100,000 feet. Teams average 350 to over 500 miles per day. The race is 24/7 until you reach the finish line. This year it began in Oceanside, CA and racers will finish in Annapolis, MD.
One of the teams is an all TYPE 1 diabetes team (TTI). The New York Times wrote a story about TT1 in their "Health" section on Saturday, 20th June--the day of the race. TT1 won first in 2007 and second in 2008. They are hoping to regain their title this year. RAAM is an International Race LONGER than the Tour de France. Many of the TT1 members hope to enter the TdF and do for diabetes what Lance Armstrong did for cancer.

New York Times Article
TT1 AND TT2 Blogs (there is a Type 2 team too)
Race Across America Website (RAAM)

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.

Wake-up Calls

Apologies for not keeping up with my weblog. Thank you to all who have sent me emails asking what I was up to....

Today's news isn't about healthcare statistics or the state of diabetes in developing countries or over-populated urban areas. I am not going to talk about research, trends, healthcare or technology. I rarely do it, but I am going to talk about me.

Six months ago, I lost my mother. The call came in the middle of the night. She died alone as many elderly people do. I wasn't there for her when she went. There is a lot of guilt and general sadness. Which among a whole host of memories made me feel about two feet tall and alone. I wasn't as sure as I usually am about approaching the big blue world without my anchor - my mother. Has the bereavement made my diabetes harder than usual to control? You betcha.

Then, the next call came. My brother's two year old was diagnosed with Type 1 diabetes. It seemed so unfair to him, to my sister-in-law and mostly my niece, Lily. They had already suffered enough loss along with the rest of our family. I had to digest the news along with them. The permanence of each loss was staggering.

With a few long discussions (I live overseas), I sent them everything I could think of that would be useful, but not too overwhelming. My brother called me to chat about the difficulties, but he was very satisfied with the level of care they were/are receiving and felt supported.

Then something really magical started to happen. I could tell things were going well. Sure it took my niece a few months to adapt to the injections and it took the same amount of overnight wake-ups and restless sleep for my brother and his wife. But now, I can tell they are in a better place. They are both flexible enough to know change will be a part of their daughter's diabetes and smart enough to know they will never get it right all the time. Our conversations are full of hope rather than full of despair. Like parents of all children with illness it takes strength and courage to face up to what may seem insurmountable and sad. I am so proud of them.

Along with my own mother-daughter polaroid there is another. It is Lily and me. Together we are a reflection of two states of being. One is a world in which we look to with uncertainty -- band-aiding our incurable illness with insulin injections. Another is a world where with a cure we stand strong, knowing our uncertainty has faded.

It is a tightrope walk that all of us lead.

When Life Depends on Medical Technology

Two days ago I contacted the Global offices for Medtronic because I could not find anyone here in the UK to speak to on a Friday evening. Admittedly it wasn't that serious. the clip that attaches the insulin pump to my clothing had snapped off, but other then stuffing the pump in my under garments (ie, very uncomfortable!), I was a little concerned how I was going to manage my daily life! I had a serious presentation to make and a horse riding event to attend. I had become so dependent on utilizing the clip, that I was feeling vulnerable.

This was their response to the letter I sent. I am impressed! My faith is restored. With a little effort and finding someone inside the corporation who is compassionate and savvy - I was treated with respect. This is a rare find in the market today! My pump clip arrived as promised. Now I know if there is really a serious problem, I feel better about Medtronic, their culture and their commitment to patient support.
>
Their Letter:

> Dear Elizabeth Snouffer,
>
> Thank you for contacting us. I am in receipt of your email regarding your belt clip. Due to the time difference, I am not able to follow up with our U.K. office at the present moment, however, I wanted to address your issue as soon as possible.
>
> First, I would like to apologize for the level of customer service you experienced in not being able to reach our U.K. office, as well as the service you received when you contacted our U.S. 24 Hour Help Line. Clearly this is unacceptable. Please know these issues will be addressed.
>
> We genuinely hope you will accept our apology for the inconvenience and the way in which you were treated. I am sending you a complimentary replacement pump clip to the address on your email.
>
> Thank you once again for your email and sharing this issue with us. We hope to learn from this and improve our customer service. If you have any further questions or concerns, please contact the 24 Hour Help Line at 818-576-5555.
>
> Best Regards,
>
> Denise Grant-Perez
> Medtronic Diabetes Senior Clinical Technician
> 24 Hour HelpLine
> International/Research
> 24 Hour Product HelpLine

Like I said, I am very impressed!

Pink Floyd Founder `Syd' Barrett Dies of Diabetes

...the brilliant, erratic catalyst for Floyd's early success, "died peacefully at home" last Friday at 60, according to his brother. The musician had been in ill health for years, battling type 2 diabetes, as well as stomach ulcers.
A singer and guitarist, and originally the band's principal songwriter, Barrett masterminded Pink Floyd's breakthrough album, Pipers at the Gates of Dawn, before being sidelined in the late 1960s by LSD-induced behavioral problems.

After battling years of drug addiction and mental illness, diabetes took his life in the end.

Today, only life support. Tomorrow?

I must admit, I just haven't been around lately. It sometimes takes quite a lot for me to become inspired. In truth, there is always something happening out there in the diabetes atmosphere, but often it smacks of endless chatter about the world's destiny with diabetes or how all pharma's are jumping on the diabetes bandwagon. Too obvious. Old news.

I came across Douglas Melton in my Google Alerts folder; with 467 diabetes alerts to review, a quotation from Melton was hard to spot but got me excited. The greatest impact of the digital age is this - that I can become transfixed immediately with a few words and build a story!

"Insulin is not a cure for diabetes, It is merely life support."

Melton gets it. So few do. He told this to a Senate Hearing Committee on Stem Cell Research. He runs the Stem Cell Research Institute at Harvard. He is an academic, so he is credible, not whiny. Oh, and he has two children with Type 1. Douglas Melton is an Investigator of the Howard Hughes Medical Institute, the Thomas Dudley Cabot Professor of the Natural Sciences in the Faculty of Arts and Sciences at Harvard University, and co-director of the Harvard Stem Cell Institute. Melton and Kevin Eggan, an assistant professor of molecular and cellular biology at Harvard, are using SCNT to study Type 1 diabetes. The process, known as somatic cell nuclear transfer (SCNT), produces disease-specific stem cell lines. Melton's work has had an impact on medicine. He has been instrumental in forming collaborations bringing together key researchers and pushing the limits of biomedical exploration.
He is a visionary.

"As for what's being envisioned, a significant number of diseases are caused by cell defects or deficiencies including all neurodegenerative disorders, cardiovascular diseases, and diabetes. So if you take that on one hand a particular cell type is defective or deficient and on the other hand that stem cells can make other types of cells, it's not difficult to envision the use of stem cells to treat these cellular deficiencies."

What I love about this story is this:

It is about a dream, in action. Stem cells may play a critical role as a link to restoring various specialized cells which in turn has the potential to wipe out diabetes, other diseases, and disorders.
It is all about overcoming barriers with positive action and communication. Morality? Is it immoral not to seize an opportunity that would reduce disease and suffering? Keep your logic simple.

"I think its difficult to justify on ethical grounds the failure to help treat persons who are suffering from such diseases... If anything, I think there is only an ethically compelling argument to conduct such research and to make those therapies possible to treat those people."

It is not a case of right versus wrong. A winner will never emerge from Science vs. Religion. It is all about education, and intelligent decisions - nationally/globally.

On the subject of the Bush administration federal restrictions on embryonic stem cell research funding and the general confusion as to what that policy entails, Melton noted, "I think the main reason it's confusing to people is because the policy is a political compromise and not an ethical compromise. What it says is that embryonic stem cells in existence before August 2001 – which was when the Bush administration established a position on embryonic stem cell research – can be studied with federal funds. Any cell line made after August 2001, however was unethical."

I rarely focus so solely and intensely on T1, but it is the passion of this story and the dream. It is pioneers like Melton who keep a steady eye on our future and those, who will somehow genetically, follow us.

"Little Common Ground" (re-posted due to spam comment)

“Beyond 'I'm a Diabetic,' Little Common Ground”, The New York Times, N.Y./Region

Is research for type 1 diabetes undercutting type 2 diabetes ? Is the current plethora of media coverage for type 2 diabetes blurring the historical boundaries between the public’s perception of type 1 and type 2. Are organizations who focus solely on raising money for type 1 research performing a disservice to each classified type by spreading potential research funds even further?
Read this controversial article in the NY Times and let me know what you think…

"Yet the number of Type 2 diabetics is so large, and growing so rapidly, that Type 1 parents often say they fear that their children's plight is being lost in the din of the larger problem with the similar name. They often bristle when their children are mistaken for Type 2 diabetics, fearful that their children, and their own fund-raising efforts, are being muddied by the stigma that clings to the other disease."

"I understand where the separatist attitude of the Type 1 people is coming from," said Rudolph L. Leibel, director of research at the Naomi Berrie Diabetes Center at Columbia University. "But I question whether it's in anyone's best interests."

"The Type 1 forces make no apologies. They argue that a Type 1 cure is possible, and that a dollar devoted to Type 1 is not necessarily one taken from Type 2."

Our Bodies and Insulin

As of late, I have been working a lot. Admittedly, this blog has suffered!

Another challenge I faced recently was excruciatingly bad sugars. It was horrendous and frightening. I am a “mum” and I manage a staff at work and I just felt like things were falling apart.

It all started with a little problem that I have had for 5 or so years now called Diabetic Hand Syndrome. Twice a year I receive steroid injections for pain management. My sugars tend to rise a little after the injection, but it is manageable. This time my sugar went up to 27 mmol (multiply by 18 to get mgdl!) It took me six hours to get it down. But things didn’t get better – they were getting consistently worse. My sugars varied from 17 mmol to 13 mmol over a succession of days. 10 was looking pretty good. I was starving myself for better sugars but nothing was working.

Finally I got to see my doctor. My A1c was not affected, but together we couldn’t figure out what was going on with me. Was it purely hormonal – did I have an over-active liver?

I asked my doctor to look at my pump injection sites – sure enough this was the problem. I am suffering from Lipohypertrophy. Here is what my doctor told me:

Lipohypertrophy (which is common and due to fat build up) occurs with all insulins, including aspart and lispro because it is due to the action of insulin on the fat cells. There is no difference between lispro and aspart in this respect. Most people have some degree of liohypertrophy at some stage in their diabetic career, whether on injections or the pump, by the way.

It isn’t that bad on me – in fact hardly noticeable on my stomach area. But there are these little globulars of fat storage sites which I can detect (and I am quite thin.) Hopefully, they will disapear in 6 months or so. I now must use the sites on my lower back or sides, upper legs or even arms! Talk about a human pin cushion!

Things improved in 24 hours. And my trust in my doctor is stronger than ever.

Diabetes Plague?

In keeping up with my interest in the NY City Department of Health's policy for diabetes survelliance and evaluation for diabetes patients diagnosed and seeking medical care in all the NYC Boroughs, I saw this editorial tonight and thought I would post it. (The original article I posted was on 20 December 2005.) The author of the editorial, Dr. Gerald Bernstein appears to be dedicated to the care of many patients with T2 diabetes and with one quick review of his biography, we can easily comprehend how deep his commitment to diabetes research and furthering diabetes advances in mainstream healthcare. Is his concordance with NYC DoH a reflection of his frustration in dealing with so many poorly cared patients?

Dr. Bernstein even compares diabetes to the plague...seems very extreme, but is it? In modern terminology the word plague is used to describe any epidemic disease with a high death rate which is usually also highly infectious. The Plague specifically refers to the bubonic plague, a disease carried by rats and spread by fleas which killed a third of all humans in medieval Europe.

I think his tone is a bird's eye view into what it must be like for a diabetologist or an endocrinologist in the US - and what he sees everyday. I know that just sitting in any diabetes clinic for one hour is like being in a war zone with bandaged (sometimes bleeding) legs, immobile people in their 40's, 50's and 60's ..., bandaged eyes, people without limbs and finally, tears and frustration. I see the eyes of these patients looking at me - a relatively young woman who looks healthy. Their eyes look right through me begging for understanding and solutions. I am not being dramatic...the emotions are palpable. The faces of diabetes are (often) heart-breaking.

I return home from my quarterly appointment feeling raw from seeing so much pain and suffering for a disease that strikes so quietly yet so insidiously with many serious and horrendous complications! What will be the result of all this media attention? Will all diabetes patients finally have the opportunity to receive the education and care they require?

Calling on the United Nations for a Diabetes Resolution

The International Diabetes Federation (IDF) is leading a worldwide campaign by the global diabetes community to have the United Nations and its member countries recognise the global burden of diabetes by adopting a UN Resolution on diabetes. Currently, the UN Millenium Development goals are the United Nation's primary focus, and rightly so. But diabetes is a problem in developing nations, much more of a problem then previously thought. I believe that the UN will rely on World Health to drive the issue. However, it is honourable that diabetes organizations across the globe are calling for the consideration of such a resolution.

IDF's press/web page states:

IDF has assembled a global coalition of interested parties to promote the Resolution. Momentum is picking up speed with support for the initiative coming from IDF industry partners and member associations, as well as community, consumer, professional and philanthropic organisations from around the world. These include the European Society for the Study of Diabetes (EASD), the American Diabetes Association (ADA), the Juvenile Diabetes Research Foundation (JDRF), Rotary International and Lions Clubs International. The aim is for the UN Resolution to be declared on World Diabetes Day 2007 (November 14). The IDF-led campaign and the encouraging response received so far has the potential to change the face of diabetes and help bring this life-threatening condition out of the shadows.

What I find particularly useful is the IDF's eAtlas where current global diabetes data and forecasts can be found.

Tomorrow is American Diabetes Alert Day(28 March 2006) an outreach campaign to find the undiagnosed - a significant problem around the world. World Diabetes Day is 14 November 2006. I wonder what we can do to help make the UN resolution to recognize the global burden of diabetes a reality for 2007. More next time.

Realistic Next Step? Islet Transplantation

A friend traveling between the UK and Minneapolis (she is a pumper and a continuous glucose monitor user!) submitted this news flash to the UK pumpers group. I remember hearing about the Edmonton Protocol first in the 1990’s, and was asked by my former (and well missed) doctor in NYC to think about participating. My doctor wanted me “in,” but my husband and I decided it was too risky, and I declined. Read about how the group started here.



Researchers at the University of Alberta in Edmonton, Canada, use this procedure (named the Edmonton protocol) to transplant pancreatic islets into people with type 1 diabetes. The lead researcher, founder and current Director is James Shapiro, MD. A multicenter clinical trial of the Edmonton protocol for islet transplantation is currently under way. According to the Immune Tolerance Network (ITN), as of June 2003, about 50 percent of the patients have remained insulin-free up to 1 year after receiving the transplanted islets. A clinical trial of the Edmonton protocol is also being conducted by the ITN, funded by the National Institutes of Health and the Juvenile Diabetes Research Foundation International. The article above refers to this particular arm of the trial.

What is interesting to note is:

-researchers remove the islets from the pancreas of a deceased donor. Because the islets are fragile, transplantation occurs soon after they are removed, much like any organ transplantation, with all the similar barriers and failures
-a typical transplant requires about 1 million islets, extracted from two donor pancreases
- the recipient needs to take immunosuppressive drugs that stop the immune system from rejecting the transplanted islets and this doesn’t always work. The side effects are tough, including mouth sores and gastrointestinal problems, increased blood cholesterol levels, decreased white blood cell counts, decreased kidney function, and increased susceptibility to bacterial and viral infections – the drugs may also increase the risk of cancer.
-One setback is the shortage of islet cells. The supply available from deceased donors is not sufficient to offer this treatment to all T1’s. As this article states they are looking at other means to increase supply and demand such as cloned cells produced on a large scale in computer-controlled bioreactor which would eventually could be given through booster shots.

Read about the clinical trials or one person’s personal experience before you decide if the risks outweigh the benefits? And who qualifies? Diabetes UK initiated the Islet Transplantation Consortium (Diabetes UKITC) which was formed in 2001 in the hope of replicating the ‘Edmonton’ protocol in the UK and carrying out collaborative research on the domestic and international arena. The Consortium is made up of medical researchers interested and/or involved in islet cell research in the UK. But it isn't clear how far they have progressed. Last year, Dr. Stephanie Amiel of Kings College lead the team that performed the first successful islet transplantation. This was funded by Kings College, I believe. Here is a study which is currently recruiting for the procedure.

Infections, Vaccines and Diabetes: What is the Connection?

Lately, I have been thinking a lot about vaccines. I thought about the flu vaccine I was given last October which did not protect me from getting the flu last week. I have thought about the threat of the Bird Flu H5n1 and the Pandemic Flu of 1918 that killed 50 million people across the globe, and how protected we will be if the Bird Flu today mutates and crosses over to the human race. I have also been thinking about a comment that I received last week in response to my post on TEDDY. I was given a vaccine for Chicken Pox at age 5. I then became infected with chicken pox. Go figure. Then I contracted chicken pox at the age of 10 - again! The doctors in 1974 decided I should have another varicella vaccine. Soonafter my chicken pox infection and vaccination, I too was diagnosed as a T1 diabetic.

In an effort to show academia's response to external factors, such as vaccines being given the blame for Paediatric T1 diabetes, I have listed a few here.

Admittedly, I have no idea whether or not, the threat of diabetes was present when I became infected with chicken pox at age 10, and the infection proved my vulnerability or if the infection itself activated my immune system to wipe out the beta cells present in my pancreas. Others have suggested that vaccinations carry the threat themselves. One scientist has been studying whether time of vaccination is responsible. The author, Claussen, believes that any vaccination given after 2 months old, increases the risk for diabetes. This article refutes this hypothesis:

The results of our study and the preponderance of epidemiologic evidence do not support an association between any of the recommended childhood vaccines and an increased risk of type 1 diabetes.

Claussen (as before) disagrees:

Exposure to HiB immunization is associated with an increased risk of IDDM. (insulin dependent diabetes mellitus)

An altogether different article sets out to study whether viruses induce T1 diabetes in children. This study focuses on the evaluation of some infectious diseases as risk determinants of type I. The study assessed whether children who had become infected by one or two of the following viruses posed a threat: morbilli, parotitis, rubella, pertussis or varicella (chicken pox!). Their conclusion?

Contracted infections can be considered potential accelerating factors of clinical manifestation of type I DM. Therefore multiple exposures might speed up the onset of diabetes in children

Lastly, there is this paper that investigates perinatal
data, early nutrition, growth and development, infectious
diseases, atopic diseases and vaccinations. The group that collected the data was/is called the EURODIAB collaborative group (established in 1988) and consisted of 44 European centres covering about 30 million children.
They found incidence rates were highest in northern and north-western Europe and lowest in southern and eastern Europe. They found incidence in northern
Europe to be the highest in the world.
(What is your cultural background? I just happen to be Norwegian, and Dutch with a sprinkling of French and English)
Here is what they found to be significant risk factors for T1 diabetes:
Perinatal risk factors:
Older maternal age (high risk in children born to mothers 25 years +)(YES for me)
Maternal preeclampsia (YES for me)
Neonatal respiratory disease
Jaundice caused by blood-group incompatibility (YES for me)

Childhood
prediabetic children were taller than their peers for up to 5 years
of age. (YES for me)
Even higher differences were seen for weight
Association between accelerated growth and risk (YES for me)

Vaccines
no evidence to support vaccinations
(against rubella, morbilli, varicella, pertussis, poliomyelitis,
diphtheria, tetanus, parotitis and haemophilus
influenza B) increasing the risk of childhood
Type 1 diabetes.

This last paper definitively relates to me. Obviously, most papers cannot correlate vaccinations and incidence of T1. What are your thoughts? Do any of these factors relate to you or your children?

Diabetes Greatest Contributor to Rise in the Blind

The Sunday Times/United Kingdom
"THE number of blind people in Ireland has grown by 37% in less than a decade, with diabetes contributing to the biggest increase."

"...there are now so many diabetics but there is not enough medical personnel or funding to identify everyone who requires treatment. A national screening programme is needed for early detection of the disease."

Is Ireland a statistical reflection of what is happening in the U.S. and the UK in a broader sense?

What's Diabetes Like When...

Today, a colleague who has pharmaceutical marketing experience in diabetes care, asked me a number of legitimate questions about diabetes. One of them was,

“Is it really hard taking injections in front of people? Because many people use this as a reason for not wanting to inject.”

When I was a child and teenager, it definitely had to do with shame. Not so long ago, I remember being in situations (not usually with family or with close friends) when I would give myself a time limit for taking an injection if I felt uncomfortable in front of a particular group i.e., acquaintances, new social group, colleagues, clients etc. Usually it had to do with proximity and privacy when sitting at a dinner table – especially in smart New York bistros. I often worried about other people’s comfort levels more than my own. Before fast acting analogs, in my mind it really went like this…

“OK, entree will arrive in 30 minutes, must excuse myself to bathroom now or I am doomed.”

Today, I just don’t worry. Perhaps it is because we are used to technological gadgets like mobile phones, blackberry devices, ipod et al. And just like anyone who may turn off their phone, check a message or collapse their ipod earplugs to have a conversation, I have no qualms about whipping out my pump or setting my glucose meter on my lap, and performing a quickie blood test and basal in less than 10 seconds. It is just that simple. (Of course the other reason may be that I have had this illness for far too long!)

I think we have come a long way. The complacency factor, however, is a very different story.

More next time.

What Comes First? Diabetes or Socio-economic Class?

London, England
The article below and linked discusses the relationship between chronic illness and low-er economic status or as it is called in the article "material deprivation."

"Researchers in London have identified a link between increased hospital admission rates for chronic diseases and high levels of material deprivation in the capital. The research published in this month's Journal of the Royal Society of Medicine, shows how admission rates for chronic diseases such as asthma and diabetes are linked to the level of material deprivation in the surrounding area, and not to poor care by GPs serving them."

and

More importantly it also illustrates that high admission rates for chronic diseases may not be down to poor primary care. If a PCT is in a materially deprived area, higher admission rates for chronic diseases could be inevitable."

(PCT's are NHS organisations which focus on managing the health of a local population.)

Interesting. Not sure what the Royal Society of Medicine is aiming for here. It is the chicken and egg dilemma. Which comes first? Education and preventative care or large, poor diabetic population?

Study to Identify Cause of Type 1 Diabetes

United States. The Medical College of Georgia is among numerous sites chosen by the National Institutes of Health to examine the environmental risk factors that may lead to the cause of Type 1 diabetes. The primary study, called TEDDY - The Environmental Determinants of Diabetes in the Young, will investigate the environmental triggers of T1 diabetes which turn the body’s immune system on the insulin-producing cells of the pancreas. Last October, study sites began a four-year process to screen 220,800 healthy babies for genes that put them at risk for type 1 diabetes. They expect to identify the genes in about 13,000 babies, about half of whom will embark with their families on a 15-year journey that may help cure the disease.








Dr. Jin Xiong She, Director of the Center for Biotechnology and Genomic Medicne at the Medical College of Georgia (MCG) initiated the conversation with other scientists years ago before making applications to the NIH for such a study. Now MCG is the lead site for seven hospitals including University Hospital and St. Joseph Hospital in Augusta; Northside Hospital in Atlanta; and three hospitals in Gainesville, Fla. The other lead sites include Barbara Davis Center at the University of Colorado; Pacific Northwest Research Institute in Seattle; the University of Turku in Finland; Lund University in Sweden; and the Diabetes Research Institute in Munich, Germany.

TEDDY will follow children through the two age peaks for type 1 diabetes-- 2-4 and 12-15 and researchers will analyze everything from drinking water to nail clippings. The extensive data will be examined collectively and sorted taking regional variables into account.

Top 10 Things to do for that special someone (with diabetes) on V Day

10. Real truffles with filet mignon
9. Red lingerie
8. Chanel No. 5 (we like our numbers under 6.5)
7. Pomegranate Champagne (1-2 glasses won’t hurt)



6. Jewelry – rubies are nice
5. Bubble Bath with diptych candles and fresh rose petals (be careful not to
drop your pump in the tub)
4. Full body massage with essential oils
3. Surprise trip to Paris/New York or Rome
2. Red cocktail dress like this one…



1. Sex! (… keep juice beside the bed in case of hypo!)

Are you a High Functioning Diabetic?

The other day I had lunch with a woman who was recently diagnosed with Type 1 diabetes. We both live in London, and are both from the U.S. (she from Minnesota, and me from New York City), and so, we could hardly contain ourselves in sharing information. We discussed managing diabetes in Europe, and the pros and the cons of having to deal with a major illness abroad. Then, she asked me:

“Do you think you are what they call a high functioning diabetic?”

I had to laugh, but it was a very innocent question. I wondered if this was something that doctors in the U.S. discussed with their patients. It occurred to me that my new friend as a very senior professional had discussed her life with her health care teams, and they defined her as a very high functioning person -- now with diabetes. Now, she would have to become a high functioning diabetic.

Which leads me to two questions.

1. Are we defined by our disease? With diagnosis, does our diabetes over-ride (trump) being called a man, woman or child? Does Diabetic become our definition?
2. What is a high functioning diabetic…anyway?

High functioning is a term used to describe people with disabilities such as autism or neurological disorders. This is astounding! I get the sense that the Healthcare community has organically decided to utilize this term for diabetics without any consensus. There is such a thing as a person who has adapted well and a person who has not. Let’s call it…..a diabetes compatibility factor™.



The ability to consistently co-exist with or be tolerant of diabetes.

For me, a high compatibility factor™ is the ability to plan and manage life goals in the same manner with or without diabetes. Obviously, knowledge and fate are going have an impact on this. I work in healthcare communications because I believe working on ways to improve doctor and patient information AND communication deserves my energy. I am committed to it. I am certain, having diabetes as a child had a great impact on why I chose this. Perhaps if I had been diagnosed later in life, I would have chosen another field, but with the same degree of commitment and dedication. It is just who I am. Diabetes doesn’t change that.

The second greatest factor is the ability to accept the fact that having diabetes means accepting not always having control. For me this is KEY. I have learned not to get angry or upset if my numbers are off…either low or high. I have learned that accepting the good with the bad, and not berating myself, doctors or the world for my predicament has made me a happier person.