diatribe - research and product news for people with diabetes - issue #7

8/14/2019 DiaTribe - Research and Product News for People With Diabetes - Issue #7

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Beautiful Landmarks for anUnrecognized Epidemic (B.L.U.E)The rst UN-sponsored World Diabetes

Day (WDD) took place on November 14, 2007, signaling real progress for thediabetes world. We spent three eventful

days in New York and came away feelingrather positive about our communitysability to effect change. Diabetes isslowly being recognized as much morethan just a healthcare problem its aneconomic problem, a social problem,and a development problem. Much of the focus during WDD was on earlyintervention and improved treatments to reduce both the human and nancial costs of diabetic complications. Virtually all speakers discussed the great need to raise awarenessand increase education, especially in developing countries. The International Diabetes

Federation (IDF) did a tremendous job managing the global efforts that made WDD asuccess. We encourage you to join the awareness campaign by teaching somebody onehelpful fact about diabetes just one fact to anyone! once you nish reading diaTribeof course!

The premier of the revealing documentary, Diabetes A Global Epidemic, kicked off the weeks celebrations. To anybody who was not in the know, one could easily mistake theelegant gathering at New Yorks Museum of Natural History on Monday, November 12, as

just another night at the museum. It would have been difcult to tell that the lady in thefabulous red dress had just circumnavigatedthe globe with a lm crew from Discovery Health, chasing down eye-opening diabetesstories. This lady is Dr. Francine Kaufman,

whom we interviewed in this issues diaTribedialogue.

The fabulous evening was a prelude tothe more solemn event at the United Nations,

with Dr. Martin Silink, President of theIDF. Every time we hear the measuredtones of Dr. Silink, we experience a sense

V O L U M E 1 I S S U E 7

World Diabetes Day ...... 1 B.L.U.E.

Letter from the Editor .. 2

Quotable Quotes ........... 6(S)he said what?!?

FingerSticks ................... 6 Flying with diabetes

diaTribe Dialogue ........... 7 Dr. Francine Kaufman onthe global diabetes epidemic

Logbook .......................... 10 In search of reimbursement: A CGM odyssey

Conference Pearls .......... 12 ISPAD news children,the DAWN study and pain perception

SUM Musings ............... 14 Pumping, after a fashion

Learning Curve .............. 15 Inhaled inslin: Into thin air?

Test Drive ........................ 17 Measured strides away from pre-prediabetes

What Were Reading ...... 19The Diabetes Barometer and

a troubled letter to the NewYork Times

NewNowNext ................ 20aDorn and accessorize

Trial Watch ............. ......... 20Getting to the bottom of theincretin debate

in this issue

research and product news for people with diabetes

To subscribe to diaTribe,visit www.diaTribe.us. 1

continued on page 3

diaTribe ensured that our very own Coit

Tower, here in San Francisco was lit blue.


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D I AT R I B E R E S E A R C H A N D P R O D U C T N E W S F O R P E O P L E W I T H D I A B E T E S

2

diaTribe staff Editor in ChiefKelly L. Close

Managing EditorJames S. Hirsch

ContributersKaku ArmahDaniel BelkinMichael ChenJenny JinSierra WaltonMark Yachoan

DesignGina Wilson

diaTribe advisory board

Jennifer Block, RN, CDEDr. Zachary Bloomgarden, MDDr. Bruce Bode, MDDr. Nancy Bohannon, MDDr. Bruce Buckingham, MDDr. Wendell Cheatham, MDDr. Steven EdelmanDr. Barry Ginsberg, MD, PhDDebbie Hinnen, CDEDr. Irl Hirsch, MDJeff HitchcockDr. Lois Jovanovic, MD

Dr. Francine Kaufman, MDDr. Aaron Kowalski, PhDMirasol PanlilioDr. William H. Polonsky, PhDMichael RobintonJane Jeffrie Seley, NP, CDEDr. Paul Strumph, MDVirginia Valentine, CDEDr. Howard Wolpert, MDGloria Yee, RN, CDE

from the editor

All diabetes is personal: How does it affect that one individualis something we ask ourselves a lot. A solemn truth is thatdiabetes has become more and more global - an epidemic of our

time that is reaching further into every country on every continent inthe world. The task is channeling the specic human experiences into alasting movement for improved care.

This issue of diaTribe spotlights global initiatives that we hope will be catalystsfor change. The rst United Nations World Diabetes Day was on Nov. 14. It was a genuinecelebration of our unity, spirit, and perseverance as well as a clear call for more resources,awareness, and education. From the blue lights that illumined iconic buildings across theglobe, to the 246-step march in New York that represented how many millions of people

worldwide have the disease, to the inspiring words of Dr. Martin Silink, President of theInternational Diabetes Federation, we hope this day did indeed represent a tipping pointfor our cause. There are an estimated 246 million people with diabetes globally - thatcompared to 33 million with AIDS and 25 million with cancer. All conditions should haveadvocates, but the speed at which diabetes is increasing makes us feel that ours needs evenmore attention from policymakers and insurers in particular.

In this issue, we have an inspiring interview with Dr. Francine Kaufman, who traveled to six continents over the past year for a documentary titled,Diabetes- A Global Epidemic this premiered during the World Diabetes Day commemorations. Dr. Kaufman is widely known for her work with children and obesity.But in the hour-long documentary, which was narrated by Glenn Close and generously supported by Novo Nordisk, she shares with us stories both inspirational and heartbreakingfrom other countries and other cultures, and she reminds us of our daunting challenge.No matter what, she said, you would be hard-pressed to be on this planet without having

diabetes affect your life. You can next see the documentary on December 18 at 8 am EST or you can watch it anytime at http://discoveryhealthcme.discovery.com/beyond/miniPlayer.html?playerId=1312399220. A preview of the documentary is on our diaTribe video newssite at http://www.youtube.com/watch?v=mu2tEE0w5nw.

diaTribe celebrates a fantastic rst year anniversary. Please help us commemoratethis milestone by lling out a short diaTribe survey at http://www.surveymonkey.com/s.aspx?sm=64MtTn9UeDen7Sh2IPsnSQ_3d_3d. We hope to continue growing from strengthto strength with your valuable input and hopefully, your willingness to join our Patient

Advisory Board.

It is no longer news that there is diabetes news every day; we always try to focuson how any given trial, experiment, or product will affect an individual patient. Thats how

we live it and breathe it. All diabetes is personal, and we are the main characters in our ownlittle dramas . . . but our stage is truly worldwide. On this note, happy holidays to our globalcommunity.

Peace,

Kelly L. Close


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3continued on page 4

of comfort akin to having a great cut man in our corner of the ring. Dr. Silink deliveredmultiple presentations over four days and would inevitably touch on three things: his takeon the concept of the tipping point, the creation of a global fund for diabetes, and blue-lit buildings around the world. The tipping point, popularized by Malcolm Gladwell,characterizes the domino effect for an idea once a critical mass of support has beenattained. This was how the UN Resolution on diabetes gained traction last year, and this

is how Dr. Silink believes governmental actions, implementing the ideas laid out in theResolution, will occur.

Currently, 80 percent of diabetes medical care expenditures are from developed countries while, paradoxically, 80 percent of diabetic patients will soon live in low-to-middle-incomecountries. Bangladesh, a low-income country, took the initiative and spearheaded the UNResolution on diabetes after the idea was brought to the UN by two determined spirits (see

below). diaTribe must point out that at the European Association for the Study of Diabetesconference in 2006, Bangladesh was the sole country calling for a UN Resolution there

was a tiny press conference with fewer than ve of us present huge kudos to the country for making the impossible happen.

Naturally, we were happy that Dr. Silink mentioned Coit Tower in San Francisco, ourhometown, whenever he noted buildings lit in blue to raise awareness of diabetes. Check out the diaTribe video on http://www.youtube.com/watch?v=bVI_BuOkPNk to see how this happened and write to us at [email protected] and let us know if you saw a

building in your city light up blue on November 14 and tell us what it meant to you! Wellhave a quotable quotes page about WDD next issue! We were so glad to see locally, that thehard work with the International Diabetes Federation (IDF) and the mayors ofce came tofruition we hope San Francisco will continue to wake up, along with other cities aroundthe globe, and ght even harder to raise awareness about diabetes. With diaTribe, the CoitTower lighting was co-sponsored by the Diabetes Care Coalition (DCC), the AmericanDiabetes Association (ADA), Diabetes Mine, and Johnson & Johnson. We note that here

in the Bay Area, our esteemed mayor, Gavin Newsom, who signed the proclamation forthe lighting of Coit Tower began an impressive Shape Up! Program in 2006 to get peoplemoving long may this continue!

Globally, icons were lit up to commemorate the day, including the Leaning Tower of Pisa,the Sydney Opera House, the Sears Tower, the Taipei 100 Tower (the tallest building in the

world since 2004 no less), Niagara Falls, the London Eye, Seoul Tower, Moshe Aviv towerin Tel-Aviv, Catedral de Lima in Peru, and of course the Empire State Building in New York (see our photomontage at the end of this article).

The amazing Changing Diabetes Bus that weve now seen in South Africa (IDF 06), Chicago(ADA 07) and Berlin (ISPAD 07 see this issues Conference Pearls) spent two days as the

center of a very hip diabetes village set up in the heart of Union Square in Manhattan. This56-foot mobile testament to Novo Nordisks commitment to diabetes education received~5,500 visitors and performed 439 diabetes screenings in a single day. In a day! Withouta doubt, diabetes awareness at its best. Once the highly regarded Dr. Alan Moses, Chief Medical Ofcer for Novo Nordisk, had ofcially opened New Yorks leg of the bus tour, we

were struck by the swiftness with which the visits occurred. New York was originally slatedas the nal destination for the bus tour; however, true to Novo Nordisks commitment, diaTribelearned that the tour would continue into 2008 starting in France! Indeed, at the ChangingDiabetes bus, New Yorkers came, New Yorkers saw, and New Yorkers departed equipped witha pedometer to undertake healthy lifestyle changes learning how to work practically toward

Write to us at

comments@diatribe.

us and let us know if

you saw a building in

your city light up blue on

November 14 and tell us

what it meant to you!

Currently, 80 percent of

diabetes medical care

expenditures are from

developed countries

while, paradoxically,

80 percent of diabetic

patients will soon live in

low-to-middle-income

countries.

continued from page 1


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A WDD diaTribe photomontage

The London Eye UK

Taipei 101 Taipei

Kuwait Towers Kuwait

Christ the Redeemer Brazil Astana Baiterek Kazakhstan Ponte Vecchio Florence Italy

Fountain in Craiova Romania

Spinnaker Tower UK

Antwerp City Hall Belgium

Tokyo Tower Tokyo Azrieli Center Tel-Aviv Malgrate Castle Italy


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quotable quotesNo matter what, you would be hard-pressed to be on this planet without having diabetesaffect your life.

Dr. Fran Kaufman, explaining that everybody is the target audience of her World Diabetes Day documentary, because everybody is affected, directly or indirectly, bydiabetes. See our complete interview with Dr. Kaufman in this issues diaTribe dialogue.

In Sub-Saharan Africa, [in] a country like Mali, you live less than a year if youre a childand youre diagnosed with diabetes.

Dr. Fran Kaufman discussing her recent multi-continent trip, which was covered by Discovery Health.

World Diabetes Day in New York and at the UN was phenomenal. What an experience tosee the world come together in blue and to recognize the effect that diabetes has on peopleacross the globe.

Dr. Fran Kaufman, when asked to describe her overall reaction to World Diabetes Day.

I want to see you bouncing in your seat.Dr. Richard Atkinson, pointing out that people can burn up to 850 calories per day by

dgeting.

nger sticks


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diaTribe dialogue Diabetes Warriors:The Stories Behind the Statistics

Dr. Francine Kaufman is a highly respected and well known pediatric endocrinologist. She is the director of the Comprehensive Childhood Diabetes Center, and head of

the Center for Endocrinology, Diabetes and Metabolism at Childrens Hospital Los Angeles. Dr. Kaufman recently completed a six-continent tour with a lm crew from Discovery Health a collaborative effort led by Dr. Kaufman to draw attention to the plight of children and adults living with diabetes around the world. The premier of her documentary, Diabetes A Global Epidemic, at the New York City Museum of Natural

History, was the rst in a series of events leading up to World Diabetes Day celebrationsin New York on November 14th 2007. We believe the title of this piece speaks for itself. Inthis interview, Dr. Kaufman discusses the making of the documentary and compares thetreatment of diabetes in America and abroad.

You can view Diabetes: A Global Epidemic online at http://discoveryhealthcme.discovery.com/diabetes-global/diabetes-global.html

Kelly Close: Thank you so much Dr. Kaufman for taking time to speak with diaTribe.Could you talk broadly about your recent multi-continent trip? What were the goals of theprogram, how did it unfold, and who approached you to do this program?

Dr. Fran Kaufman: I actually approached them. I had the great opportunity to know Dr.John Whyte when I was ADA president. We came up with the concept that diabetes, as a

worldwide epidemic, should really be shown in its entirety, including the entire globe. Wethen asked for and received from Novo Nordisk, an unrestricted educational grant to moveahead. And we pretty much chased the diabetes epidemic across the globe. So, we went toevery continent, save Antarctica! We really went in search of the stories of diabetes, thestories of the people affected and the stories of what we now call our Warriors the healthcare providers, the politicians, the people out there going into battle against diabetes every day, on every continent. We featured a residential home in Cape Town in the townships, aplace where children are sent when theyre diagnosed. Most of them have type 1 and cantgo to live in their own homes because of lack of resources or lack of education.

Kaku Armah: Can you tell us more about those who were running the homes?

Dr. Kaufman: This home was run by nuns a German order that has been there for along time, taking care of children with diabetes and with other health care needs as well. So,there, the children do have access to insulin. They have meters, they have good nutrition,and good opportunities for physical activities, but of course, theyre without their families.

And we captured this one child who was just incredible, who talked to us about [how] heknows hes healthier in the home and hes actually crying as hes telling us, hes so genuine.

And he knows its good for his health, but he doesnt really want to be there. He wants to be with his family.

Kelly: Of course.

Dr. Kaufman: Any child would want to be. This is the effect of diabetes in countries andin areas of countries in which there arent the resources to keep these children healthy and

We then asked for and

received from Novo

Nordisk, an unrestricted

educational grant to

move ahead. We pretty

much chased the

diabetes epidemic

across the globe.

Dr. Francine Kaufman


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well. So they age out at some point and then what happens? They just go back out into anenvironment in which there is little access and little opportunity to be able to survive. Thisis particularly true in Sub-Saharan Africa, where in a country like Mali, a child lives lessthan a year after he or she is diagnosed with diabetes.

Kelly: Wow. Just because they dont have access to insulin?

Dr. Kaufman: They dont have access to insulin or health care providers. If they haveinsulin they dont have enough strips and I can go on and on. The whole health careparadigm is really not there. That is why programs like Life for a Child and Insulin for Lifeare so important. These programs provide insulin at a markedly reduced rate and certainly,Insulin for Life is getting a lot of donated insulin from around the world. But insulin

without strips, without meters, without education, without access to health care or somekind of provider doesnt get you anywhere. Its not just, Well send insulin down there.Thats what everybody thinks at the beginning, including me. Obviously, that doesnt solvethe problem.

Kaku: So, do they have the same problems there, as we have here, with physicians not

wanting to go into diabetes?

Dr. Kaufman: In Africa, certainly, type 1 [prevalence] is much less. Its also much lesscommon in Asia. But there are so many people in India and Asia. And actually, there area fair number of children who develop type 1 diabetes in these areas of the world. To carefor children with type 1 diabetes takes a lot training and in many areas care is not given by physicians. Its done more by nurses. So there has to be that capacity, and I think many areas of the world are overwhelmed with taking care of people with type 2.

Kelly: Thats interesting. What was your next stop?

Dr. Kaufman: We went to India where we visited the clinics of two very, very well-knowndiabetologists Dr. Ramachandran and Dr. Mohan in Chennai. Each of their clinicsfollowed 100,000 people. But theyre very, very comprehensive its pretty amazing. You

walk in, theyve got dental care, and theyve got a pharmacy that supplies medications anddevices. They actually have food that you can buy. [And they have] shoes shoes are a hugeissue in India, going barefoot can lead to problems that put people at risk for amputation.The clinics were truly comprehensive. You get all your diabetes education, medication, andeverything else that you need. So, they really end up giving you everything.

Kelly: Is this government funded?

Dr. Kaufman: No, its private. So, obviously its not accessible to everyone, which is

incredibly unfortunate. But they are committed to going out into rural regions, so wefollowed them to rural India. We were in the outskirts of Chennai, hours away you get tothe village and there is almost no electricity, no running water, people are living in huts,the animals are all over. Dr. Mohan brings a mobile van out there with a satellite dish, sotheyre doing retinal photos and sending it back to the main medical centers. Theyre doingoral glucose tolerance tests (OGTTs) with a number of positive screens and theyre out

just greeting everybody.

Dr. Kaufman: Right after India, we went to Australia.

Its not just, Well send

insulin down there.

Thats what everybody

thinks at the beginning,

including me. Obviously,

that doesnt solve the

problem.

Dr. Kaufman with children at

the Tehuis St Josephs Home for

Chronic Invalid Children in Cape

Town, South Africa.

P H O T O C O U R T E S Y O F D R

. K A U F M A N

Dr. Mohans mobile van with

satellite linkup to transfer retinal

images from rural areas in

Chennai, India to urban medical

centers.

continued on page 9


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Kaku: Diabetes management in Australia seems to win a lot of praise can you talk a bitmore about that?

Dr. Kaufman: Yes, theyre really aware of their epidemiology. Dr. Paul Zimmet and hisgroup have really led a huge effort. Theyre teaching people weight training and healthy lifestyles. Plus, I think theyre a bit more globally supported and promoted by theirgovernment. Theres a big contrast because theyve got a national health policy. I say this

all the time: every kid I take care of is going to lose their insurance. And so, they haveto scramble. They have to gure out some way to get coverage, and its just insane. Itscompletely insane that they can have diabetes and not have access to health care, supplies,medications, and secondary preventive services.

Kelly: How did you think about government support in the US compared to governmentsupport in some of the other places that you visited?

Dr. Kaufman: Well the next place we went to was Finland. There, the cities have beenredesigned. Theyve been trying to work on reducing both their diabetes and cardiovascularrates for a decade its the North Karelian Project. The environment is a lot more health-

promoting there. Everybodys got access to health care. Prevention is a real aspect of thehealth care business. So, theyre really set up to be able to do it. You go to a place likeFinland and you have envy. To me, the starkest contrast between the US and Finlandis that Finland has universal health care. The United States is behind the eight ball andcomparable, in some ways, to the developing world South Africa because of our lack of access to health care for everyone.

Kelly: Who is the target audience for the documentary?

Dr. Kaufman: Anybody and everybody. Hopefully, those who live with diabetes willnd something that resonates with them. Those who dont know much about diabetes willhopefully gain knowledge, at least, as to the scope of the problem and realize that it affectseach and every one of us in some way. No matter what, you would be hard-pressed to be onthis planet without having diabetes affect your life.

Please visit www.diaTribe.us/issues/7/diabetes-dialogue.php for the full version of this fascinating interview. diaTribe was fortunate enough to be invited to the premier of the lm, Diabetes A Global Epidemic at the Museum of Natural History in New York tokick off World Diabetes Day celebrations. Remarked Dr. Kaufman, World Diabetes Dayin New York and at the United Nations was phenomenal. What an experience to see theworld come together in blue and to recognize the effect that diabetes has on people acrossthe globe. We wholeheartedly agree.

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I say this all the time:

every kid I take care of

is going to lose their

insurance. And so, they

have to scramble. Theyhave to gure out some

way to get coverage,

and its just insane that

they can have diabetes

and not have access to

health care, supplies,

medications, and

secondary preventive

services.

Dr. Kaufman with some of

the International Diabetes

Federation Youth Ambassadors

in Cape Town, South Africa.


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continued on page 11

logbook In Search of Reimbursement: A CGM OdysseyBy James S. Hirsch

Will continuous glucose monitoring (CGM) revolutionize diabetescare? Companies are investing hundreds of millions of dollars.The Juvenile Diabetes Research Foundation (JDRF) has made

a signicant commitment; and at least one top diabetes expert, Jay Skyler, believes CGM will replace nger-stick tests in ve years.

But the ultimate acceptance of CGM may hinge less on thetechnologists, the health care providers, or even the patients but on

another group entirely the insurers.If insurers were principally interested in the health of its customers, it would gladly

support a medical device that, when properly used, offers clear benets. But privateinsurers are in business to make money; and public insurers, Medicare and Medicaid,already face spiraling health care costs.

So convincing payers that a medical device like continuous sensors new, expensive,

unproven over the long run should be reimbursed will be difcult.I speak from experience.This past summer, I was asked to use the DexCom SEVEN for a six-week trial. As

Ive previously written (diaTribe issue 5 Test Drive), Im not a technology expert and didnot particularly covet CGM, but my experience with this device was quite favorable. Thesystem still has its glitches, but knowing in real-time what your blood sugar is and whichdirection its heading could have life-saving advantages. The sensors real power, in my

judgment, is less physiological than psychological, forcing patients to be more engaged withtheir diabetes.

In my case, the DexCom SEVEN allowed me to ne-tune my overnight basal rates onmy insulin pump, caught several lows before I did, and improved my control. Over the past20 years or so, my A1cs have consistently been in the mid to high 6s. My A1c, using thesensors for only six weeks, was 6.1 (A1cs measure average blood sugars over three months).Put me on the SEVEN for three months, and I would easily post an A1c in the 5s, with littlefear of hypoglycemia.

So when my trial with the SEVEN ended, I wanted to continue. If I were beginningfrom scratch, the start-up kit costs $800, which includes the receiver (which displays

your glucose readings) and the transmitter (which attaches to your body and relays thenumbers). I already had the equipment; I just needed to pay for the disposable sensors:each one costs $60 and lasts for seven days. If you wear one constantly, the cost is $240 amonth, or $2,880 a year. Throw in extra glucose strips for calibrating the device, and yourelooking at $3,000 a year.

I wouldnt say $3,000 would bankrupt our family, but its enough to seek reimbursement and certainly enough to deter many patients, perhaps myself included,from using CGM.

So I asked my insurer, Harvard Pilgrim HealthCare of New England, to cover thesensors. DexCom actually led the paperwork, which is apparently standard among medicaldevice companies Ive used three different insulin pumps, and each company had itsown staff to deal with the insurers. As part of the application, my physician wrote a letterexplaining why I needed a continuous sensor.

As it happens, my need was more than an amorphous appeal to better control. Three years ago, I had passed out from hypoglycemia while driving on the highway. My son, then

T1

But the ultimate

acceptance of CGM

may hinge less on the

technologists, the health

care providers, or even

the patients but onanother group entirely

the insurers.

DexCom STS SEVEN continuous

glucose monitoring system


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told Harvard Pilgrim for free.My second thought was: What possible rationale does Harvard Pilgrim have for covering

continuous sensors linked to an insulin pump, but not the sensors by themselves?Harvard Pilgrim did acknowledge that there is no question that the system would be

very helpful in monitoring your insulin levels, which led to my third thought: the systemdoesnt measure insulin levels (it measures blood sugars), so how in the hell can HarvardPilgrim pass judgment on something that it doesnt even understand?

I called my Appeals Analyst, Kay Frye, who said Harvard Pilgrim would only reimburse such a product if coverage were mandated by state law or if the product wasincluded in the existing benets negotiated by my wifes employer.

So I now had several options. I could move to another state, if any exists, that mandatesCGM coverage. My wife can quit her job and nd an employer who might include CGMin its benets. I can sue Harvard Pilgrim. Or I can seek an external review by writing theMassachusetts Department of Public Health.

I am seeking the latter, and a DexCom manager is helping me prepare my appeal.Presumably, if the state health department deems that CGM is necessary for me, HarvardPilgrim will relent.

Ill let you know my results. Until then, if you want some tips on how to win CGM

coverage, check out JDRFs helpful Web site, www.jdrf.org/cgmcoverage.Good luck.

conference pearlsInternational Society For Pediatric And AdolescentDiabetes (ISPAD)

ISPAD is the only international society specically for all types of childhood diabetes most commonly, type 1. This years ISPAD meeting took place at the stylish BerlinConvention Center in Alexanderplatz, Germany. It was billed as the biggest ISPADmeeting yet, with 1,300 people from 66 countries; the theme was Diabetes in Motion,which highlights the remarkable momentum in our eld. Witness the declaration by the

International Diabetes Federation (IDF) and the World Health Organization (WHO) that 2007-2008 is the Year of the Child and the Adolescent with Diabetes

The Diabetes Attitudes, Wishes & Needs (DAWN) Youth global program was a highlight of the meeting. This initiative, sponsored by Novo Nordisk, aims toraise awareness of the psychological, social and educational support needed for childrenand adolescents with type 1 diabetes most notably centered around depression.Hopefully, the study will provide insights to physicians and policymakers alike, bothnationally and globally.

The study includes surveys such as the DAWN Youth WebTalk, which is taking place innine countries. The effort is designed to be a conversation among youth, their families, andthe medical community to help patients play a more central role in their care. Early resultsfrom this survey indicate that 40-50 percent of parents report that their childs academicperformance is affected by diabetes. Some recommendations so far include:

The need healthcare providers to recognize and treat the psycho-social aspect of the disease as well as the physical aspect as part of routine care.

Development of age-appropriate support programs. Better education of school personnel about diabetes.

T1

[Blood sugar levels]

uctuate when your

mother-in-law visits or

when the Red Sox are

playing the Yankees,

when youre on a job

interview or a date or

a bumpy ride. In other

words, life changes your

blood sugar.


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The conference panel that discussed the DAWN study pushed for regulation to allow schoolstaff to help children with diabetes. In most European countries, children have to rely on friendsor school staff. In most other countries, including the U.S., staff and school nurses are oftennot permitted to help students with diabetes treatments like their testing blood sugar or givinginsulin injections. Furthermore, a large percentage of school staff and nurses are not trained todeal with hypoglycemia or other diabetes emergencies. This is disheartening, and we hope thatthis study corrects these shortcomings theres a long way to go.

You can be a part of this survey by visiting www.dawnsurvey.com/webtalk andcompleting the online questionnaire with the survey code NWS1.

While at ISPAD, diaTribe also learned that the incidence of type 2diabetes in children is increasing dramatically in almost all countries. In theU.S. there was a 10-fold increase in incidence from 1990-2000. In Australia theres beena 5-20 percent increase per year since 2001. In Japan, the incidence of type 2 increaseddramatically in the 1980s, remained high until the early 2000s, and now incidence hasfallen, probably due to improved public healthcare measures. This marks the rst country in which the trend has been reversed.

A panel discussing this issue suggested that in rich countries, the challenge is makingthe system work for children. The U.S. has so many systems (that) we really have no

system, said Dr. Stuart Brink, a pediatric endocrinologist. In poorer countries, childrendie because of poor access to care. Lack of insulin, for example, is still the leading causeof death of children with diabetes. In these countries, multiple daily injections (MDI) arethe best way to reduce diabetic complications, but the majority of people with diabetes arenot on MDI, even if they can get insulin. The panel also noted their surprise that after 30

years, the cost of self-monitoring of blood glucose is still so high. A child could be supplied with insulin for $225, but it costs $700 a year for blood glucose monitoring. While thesenumbers may not be the most daunting, they often represent entire annual salaries indeveloping countries. What would you do if you had to pay your entire annual salary to buy the drugs to keep yourself or your child alive?

Also at ISPAD, there was a fascinating session on the perception of pain,sponsored by Terumo, a Japanese medical products company. Pain is not felt inthe same way by different people, and this is particularly true with needles and lancets. Inthe 1920s, people with diabetes were given a glass syringe, two (huge) needles and a le (tosharpen the needles). Ouch! Do needles still hurt or is the pain psychological?

In studies by Dr. Ragnar Hanas of Uddevalla, Sweden, some 28 percent of childrenreported a fear of needles (and 35 percent of their parents!). Eight percent of kids said they couldnt concentrate because they feared their next injection. It also turns out that there is apain memory early childhood pain means a greater sensitivity to pain in later life. To deal

with injection pain, Dr Hanas was a big proponent of using injection ports in-dwellingcatheters such as the Insuon or the I-Port.

Meanwhile, Dr. Thomas Danne presented a trial he performed on the Terumo Finetouchlancet. It turned out that the absolute pain perception with Terumo was much lower

than with conventional lancets. This may be because the Terumo lancet has a hollow-boreneedle, and its entry into the skin is very shallow.

The investigators lanced 164 children with their hand inside a black box. At random,they used the Finetouch lancet, a conventional lancet and a placebo (a click only, withouta needle inside the lancing device). The Finetouch was only painful 46 percent of the time,

versus 69 percent for conventional and 8 percent for the placebo.This study showed a real difference with the Terumo lancet, but sadly this product is not

available in the USA, and the company tells us that it has no immediate plans to market ithere. Lets hope another company can nd a way to innovate on pain reduction.


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www.diaTribe.us



SUM MusingsPumping, After a FashionBy Kerri Morrone

Kerri Morrone has been living with type 1 diabetes for almost twentyyears. She writes a much-trafcked diabetes blog, Six Until Me (SUM),and is an active member of the diabetes community. She is known for her tagline, Diabetes doesnt dene me, but it helps explain me.

For so many years, I had avoided making the switch to an insulinpump because I didnt feel ready for any external signageadvertising my diabetes. For over 17 years, I had lived with

quiet injections and subtle nger pricks, which made switching to a pump the oddestcombination of pride and fear. And people only knew I had diabetes if I chose to tell them.The frustration of feeling like a human pincushion all came to a head one night, when I wastaking my fth injection of the day; something inside of me broke in two pieces and my fearmixed with strength like socks in the laundry. I called my doctor that night and left a long

message on her machine, asking her to write me a prescription. Within a few weeks, I wassitting at the Joslin Diabetes Center in Boston, attending my rst pump training class.

When I rst started pumping, I felt so strange with this machine clipped to the waistband of my pants. Unsure of how ready I was and worried about the perceptions of other people, I chose to wear the pump completely exposed, with the tubing loose and thedevice completely visible. The novelty of the pump and my inexperience had me constantly pushing the buttons and touching my hip to make sure it was still there. To be perfectly honest, I was terribly proud of myself for taking the pumping plunge. I wanted people tosee it I wanted people to ask. Their questions gave me an opportunity to educate andhelped me gain a denite level of comfort.

However, as I became more at ease with the insulin pump and its novelty wore off a bit,I started making it less of an accessory to my outts and more of a concealed instrument. I

wasnt ashamed of being diabetic or wearing an insulin pump, but I wanted to be in controlof who knew. I am very proud of my decision to pump and elated with the profoundly positive effects it has on my diabetes management. Keeping the pump under literal wrapshad nothing to do with shame but was more about being seen as Kerri before I was Kerrithe diabetic. I wanted to be in control of who knew I had diabetes. But I also wanted to bein control of the diabetes itself.

At rst, I wore my pump clipped into the pocket of my jeans. This was an acceptableplace when I was dressed casually, but moving forward as a woman in my twenties broughtme into a more professional environment, where I left my jeans at home and insteadintroduced skirts, suits, and dresses into my wardrobe. When I was interviewing fordifferent jobs, I wore my best black suit, a crisp button-down, and my insulin pump clippeddiscreetly into the waistband of my pants, undetected by everyone. When I go out with my friends, my pump ends up tucked into the back pocket of my pants. And a few weeks ago,

when I ordered my wedding gown, the seamstress and I talked about the pocket she wasgoing to create so my pump would not be the focal point on my wedding day.

Hiding an insulin pump can be done, but sometimes it takes a bit of trickery. Since Iam using a Medtronic MiniMed 512 these days, I have both the pump itself and the tubing.Ive done just about everything to keep my pump out of sight. When I don a fancy dress, Ituck the pump discreetly into the front of my bra. Depending on the neckline of a dress,sometimes the pump ends up secured in the side of my bra, underneath my arm. Ive used

T1

The frustration of feeling

like a human pincushion

all came to a head one

night, when I was taking

my fth injection of the

day; something inside of

me broke in two piecesand my fear mixed with

strength like socks in the

laundry.

I wanted to be in controlof who knew I had

diabetes. But I also

wanted to be in control of

the diabetes itself.


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www.diaTribe.us


15

the thigh thing favored by so many people with diabetes. It is a garter-esque piece of fabric with a sleeve attached, allowing for the pump to stay wrapped around my leg. Andin a moment of desperation, I once rigged up a little contraption using the clip on straps toa convertible bra, the case from the thigh holster, and a slip of duct tape. MacGyvers gotnothing on me!

My favorite spot is to hide the pump in my sock, which is a move I wish I had gured out years ago. With the infusion set on my thigh and the tubing snaking down my leg, a tight

trouser sock keeps the pump resting neatly against the side of my shin.The biggest problems Ive experienced concealing the pump have centered on bolusing.

Hiding it in my bra is one thing, but reaching in and digging around for the pump beforemeals makes for an interesting ice-breaker. However, my options range from foraging tousing a pump remote to excusing myself to the bathroom. Id never sacrice my health forfashion, so even these frustrating moments of pump-wrangling come second to controllingmy diabetes.

Admittedly, insulin pumping and all of its maintenance can be a bit of a burden. But when Im looking at my blood sugars and how much tighter they have become, wearing aninsulin pump has given me a stronger sense of control. Within three months of starting onmy insulin pump, my rattled A1C dropped from a frustrating 8.3 percent to 6.4 percent, my

dawn phenomenon had met its match, and my lows became less frequent.Its fashionable to be healthy.

learning curve Inhaled Insulin: Into Thin Air?By Mark Yarchoan

Exubera never caught on, but several powerhouse companies are still betting oninhaled insulin. Does inhaled insulin have a future, or are other efforts bound to

vaporize as well? At this point, all we know is that Exuberas was one of the costliest ops in the history of the pharmaceutical industry. Exubera had been in development for over 10 years,and its manufacturer (Pzer) believed that it would be a very successful drug that wouldrevolutionize the treatment of diabetes. However, in spite of high expectations and heavy promotion, Exubera failed to gain market traction its sales amounted to less than onethird of one percent of the insulin market. Pzer pulled Exubera from the market inOctober, less than two years after the drug was rst approved, citing poor sales and littlefaith in the products future. The episode cost Pzer $2.8 billion. What went wrong withExubera?

Exuberas ExuberanceThe bottom line, in our view, is that Pzer was trying to introduce a consumer productthat wasnt friendly to the consumer at all. It was just too complicated. We can point tothe simplicity of Lantus, Januvia, and the OmniPod insulin pump as major advantagesfor these therapies/ technologies that are enjoying great levels of success Exubera didnthave this. Lack of simplicity wasnt Exuberas only problem. We also believe Pzerunderestimated the challenge of getting type 2 patients on insulin. Insulin initiation,as they say in the business world, is just plain hard. National statistics show that over 60percent of type 2 patients are not at A1c goal but only 29 percent of type 2 patients are oninsulin. Ironically, insulin carries a stigma that deters many type 2 patients from its use,

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I once rigged up a little

contraption using the clip

on straps to a convertible

bra, the case from the

thigh holster, and a slip of

duct tape. MacGyvers

got nothing on me!

Lack of simplicity wasnt

Exuberas only problem.

We also believe Pzer

underestimated the

challenge of getting type

2 patients on insulin.

Insulin initiation, as they

say in the business world,

is just plain hard.

continued on page 16


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are more a reection of imprecise A1c measurements and not because of my routineice-cream comfort scoops before bed. After three days of celebrating diabetes awareness inNew York, I decided to take a more proactive stance, concluding that I was teetering on theedge of what I like to call pre-prediabetes. I picked up one of many free pedometers fromthe Novo Nordisk booth (thank you!) and became a step-counter. Armed with the ipodshufe sized device strapped to my belt, I now can keep track of how much I move.

How does a bottom-dollar pedometer work? It has a tiny mechanical sensor that

counts steps by taking into account how much the body shakes when walking. The shock from feet hitting the ground or a hip movement is sufcient to move the step counterforward by one unit. More advanced pedometers allow you to set body weight and step size.Mine is a more bare-bones model, featuring a single button marked R for reset. I think thats pretty much all I need.

I have to tell you, the rst few days of owning a pedometer were eye-opening. I thoughtI was hitting the American Heart Association (AHA) target of 10,000 steps a day withouteven trying but my pedometer showed only a measly 450 steps. In my frustration, I gavethe pedometer more than a few accidental shufes while I sat watching television atthe end of the day. It wasnt entirely my fault. I stayed just a few blocks from the UnitedNations building, where a lot of the events were taking place; hence my low mileage.

The next day, I decided that circumnavigation was going to be the only way to put up agood score I was already becoming competitive. In a day, I became the most inefcient walker in the city. I actually contemplated going up all the down escalators instead of taking the stairs in the UN building, but the surly security guard with his surly baton convinced me otherwise. Needless to say, I posted numbers in the high 3,000s at the endof the day. Still not at the AHA target, but I gured I was on the right track.

Fast forward three weeks and Im back in San Francisco, pedaling my bike up fromFulton Street to Divisadero Street. This goes without saying, but I will say it anyway: WhenSan Franciscans say up, they mean UP! There are some days when the only thing that keepsme from simply walking my bike is the little pinch under my belly button from my Peddie(yes, thats what I named him), and I dont care if he does rhyme with Teddy. Since thereis less shock registered from riding, I usually dont get very accurate results; so I deviseda simple formula where I just multiply the value on the pedometer screen by a fatiguefactor when I get home, and that seems to be pretty accurate. Not the most scienticprocedure but it makes me feel better about the hills I have to conquer everyday.

I have saved the best news for last. The most steps in a day that I have recorded so faris 7,452! And this was the day after Black Friday when I went to engage in a bit of retailtherapy while taking a break from studying for the GREs. Having a pedometer is a greatexcuse to shop, if you want my opinion. That said, I did return home for an amazing shrimpsalad, so you can forget about grabbing a quick bite at some fast food chain just because youare out shopping.

Do we really need to have constant reminders to do basic things like walking, drinkingenough water, ossing, and checking trafc before crossing the road? It almost seems inane

that I need some element of competition in order to actively engage in healthy living. Buthey, this seems to be working for me so Ill roll with it or should I say stroll with it.

Kaku will be back in a future issue of diaTribe doing a head to head test of two pedometers. If you have a particular device you have been eyeing and would like to see intest drive, please contact us at [email protected]. As always, wed love to have your input.

In my frustration, I gave

the pedometer more

than a few accidental

shufes while I sat

watching television atthe end of the day.

In a day, I became themost inefcient walker

in the city. I actually

contemplated going up

all the down escalators

instead of taking the

stairs in the UN building,

but the surly security

guard - with his surly

baton - convinced me

otherwise.


19/20

www.diaTribe.us



what were readingThe Diabetes BarometerBarometers have never quite conjured up the image of ~80 pages of hard hitting

truths and revealing statistics on diabetes. At least not until a week before World DiabetesDay 2007 when Novo Nordisk published the rst report of its Changing DiabetesBarometer. It has taken us a fair amount of time to understand the important role this vastglobal pressure gauge will play in diabetes as this epidemic unfolds.

The The Novo Nordisk Changing Diabetes Barometer is an annual collection of facts,gures, ideas, and innovations based on data collected nationally and internationally.Lise Kingo, Executive Vice President at Novo Nordisk, best explained the concept of the

barometer when she said, We have been driving the ght against diabetes in the dark for far too long. We need to put the lights on. We need to keep score of our shared effortsagainst diabetes to drive sustainable change. While patients, families, physicians, andindustry attack diabetes from multiple angles, it is important to keep a record of allapproaches, progress ,and results. This record will help thought-leaders to better map outnew research directions since we cannot know where were going if we do not know where

we have been.In this rst volume of the Barometer, Novo Nordisk covered 21 pilot countries. They

highlighted the achievements of a subset of these countries that have had national diabetesassociations for long enough to have faced substantial challenges and overcome them. Thereport discusses trends key to diabetes prevention and management globally. One nding,for example, was that only a third of the countries studied regularly track key measureslike blood glucose, blood pressure, and cholesterol levels. To boot, the report found that

very few of the countries have the right systems in place to accurately measure diabetesstatistics.

We look forward to the second volume, which will provide further examples of bestpractices in diabetes worldwide and include information on the Changing DiabetesBarometer Scholarship.

A letter of concern to the New York TimesDr. Lawrence Soler of the Juvenile Diabetes Research Foundation (JDRF) wrote

a letter to the New York Times on November 27 regarding what we would agree was asubstantial oversight in a November 20 piece entitled Twins on a Medical Odyssey After aDiagnosis of Diabetes (http://www.nytimes.com/2007/11/20/health/20diab.html). Thetouching story describes how Ali Newmans diagnosis of type 1 diabetes may have beenenough of a forewarning to prevent a similar diagnosis in her twin sibling, Marissa.

Marissa is the rst enrollee for an oral insulin study run by the Type 1 Diabetes TrialNet a network of diabetes research centers funded by multiple organizations including theNIH/NIDDK, JDRF and the American Diabetes Association.

What Dr. Soler points out in his abridged letter is that, despite the promising work beingdone on diabetes, the program that is paying for this (type 1 diabetes) research may well

be closed down unless Congress takes action by years end [2007]. In a conversation withdiaTribe, he mentioned that 35 percent of federal type 1 funding will be lost if the NIHsType 1 Special Diabetes Statutory Funding Program is not renewed. This could potentially affect 60,000 clinical research participants.

He called on diaTribe to help get the message out about the JDRFs Promise toRemember Me Campaign, where ordinary families affected by diabetes contact theirCongressional representatives. This is the JDRFs top legislative priority and you canhelp this effort by visiting http://promise.jdrf.org/. Check out diaTribe Editor Kelly

T1/2

T1

The program that is

paying for this [type 1

diabetes] research may

well be closed down

unless Congress takes

action by years end

[2007].

P H O T O C O U R T E S Y O F N O V O N O R D I S K


20/20


Closes blog on this campaign at http://www.revolutionhealth.com/blogs/kellyclose/jdrf-promise-to-remem-7776. Lets go out and get some promises! What else can you do?Think about reimbursement, another big priority, and sign our petition that were goingto send to governments around the globe to show them we really care! Visit http://www.surveymonkey.com/s.aspx?sm=CeG1e2pg7dS0ajPv26na9g_3d_3d.

NewNowNext aDorn and accessorizeThere are times when we would rather just leave our ungainly diabetes equipment

(and our diabetes for that matter) at home. While the latter isnt practical, aDorn designshas developed a way to transform the bulky into the elegant. Each style of bag has a pouch which is detachable from the main bag where diabetes supplies can be stowed. FounderJennifer Dorn told diaTribe that her signature detachable pouch tagged the aDornclutch gets tucked away magnetically, securely and stylishly behind the bag formingthe hallmark of the brand. Our favorite is the aDorn Messenger bag that can t up to a 17laptop as well as a watertight ice pocket to keep insulin cool, if the intensity is high enough

in your life that you think you need it! Visit http://www.adorndesigns.com/index.html tocheck out all the styles. Enter diaTribe exclusive promotional code ADORNDIATRIBE toreceive a $15 discount on your rst purchase.

trial watch

Getting to the bottom of the incretin debatehttp://www.clinicaltrials.gov/ct2/show/NCT00469833?term=byetta&recr

=Open&rank=18

This study seeks to understand the defects of insulin secretion that lead to abnormal breakdown of glucose in diabetes patients. It will focus on the incretin effect, which you canread more about in issue 5 What Were Reading (http://www.diatribe.us/issues/5/what-

were-reading.php ). In short, an incretin is a gut hormone that promotes insulin releasefrom the beta cells of the pancreas after eating. They also reduce the rate at which digestedfood is absorbed into the blood and prevent the body from releasing glucagon a hormonereleased to increase blood glucose levels. This study is looking to conclusively determinethe effect of two incretins, GLP-1 and GIP, on post-meal insulin secretion by comparingtheir effects both in diabetic patients and in non-diabetics. Requirements for the diabeticpatients include: A1c between 6.5 and 9.5 percent, treatment with metformin, sulfonylureaor a combination of the two, and a BMI between 28 and 40. Participants without diabetesmust be between 30 and 65 without a history of the disease. The study will be located inOhio and will start recruiting early next year. Please contact Dr. DAlessio at 513-558-6899or email him at David. [email protected] for more information.

diaTribe publishes information about diabetes products and research. This information is not a substitute for medical advice and should not be used to

Why not subscribe to diaTribe? Then you can receive the latestinformation from the cutting edge of diabetes research andproduct innovation. For more information, visit www.diaTribe.us

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The aDorn messenger bag

hideaway pouch elegantly

stores diabetes supplies

P H O T O B Y J E N N I F E R D O R N

diatribe - research and product news for people with diabetes - issue #7

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