diatribe - research and product news for people with diabetes - issue #6

8/14/2019 DiaTribe - Research and Product News for People With Diabetes - Issue #6

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from the editor

Generally, Im pretty upbeat about diabetes. Dont get me wrong, I

wouldnt wish it on anyone; but I do believe that if we get the right

information and support, we can manage the disease and prevent

many if not all the complications.

But two things have really depressed me of late.

First, at a recent diabetes technology conference, we heard a speech

given by one of the most important figures in the field Dr. RichardKahn, the Chief Scientific and Medical Officer of the American Diabetes Association. We

found much of his take on diabetes technology inexplicable and insensitive not exactly

what we expect from the ADA.

Specifically, Dr. Kahn cast doubt on the efficacy of technology to improve patient care.

At one point, he said, Self-monitoring costs taxpayers over $1 billion, even though there

hasnt been a single randomized, control trial demonstrating benefit. The last time we

checked, the DCCT and the UKPDS were two trials that demonstrated that tighter glycemic

control resulted in fewer long term complications and how would tighter control be

achieved, without blood glucose monitoring? Dr. Kahn also derided pump technology, even

though many we know including diaTribe managing editor James Hirsch and myself

find pump therapy a huge benefit.

We couldnt help but wonder has Richard Kahn spoken to diabetic patients aboutthese products? If he or one of his children were diagnosed with diabetes tomorrow, would

he urge that child be limited to three glucose strips a day (the Medicare limit for those on

insulin), and would he refuse to consider an insulin pump? And if the ADAs chief scientist

doubts the value of these tools, how are we supposed to lobby for greater coverage from

insurers? (We provide further details on this disappointing talk in our Conference Pearls.)

My other diatribe is aimed at the FDA. This government agency, charged with the

scrutiny of new drugs and devices, recently rejected a drug called Symlin to be used with

long-lasting, basal insulins, Lantus or Levemir, for type 2 patients. Symlin is already

approved for those taking mealtime insulin, but in the US, thats only a couple of million

patients out of 15 million diagnosed. The FDA is supposed to reject new drug applications

when there are safety concerns, but there are none to be found with the published data for

Symlin. So why the rejection? The FDA didnt say.

Its possible that the FDA which has been criticized for being too lenient with industry

is now overcompensating with excessive safety. But the price of caution is high fewer

alternative drugs that some, if not many, patients could use. We recognize that all therapies

have a risk-benefit trade-off, but we find the FDAs unexplained timidity a setback for

diabetes care.

Lets hope that in the near future, we will see enlightened leadership from the top

agencies and organizations working for improved diabetes care.

Yours truly,

Kelly Close

V O L U M E 1 I S S U E 6

From the Editor .............. 1

Quotable Quotes ........... 2(S)he said what?!?

FingerSticks ................... 2Yay for Halloween or?

diaTribe Dialogue ........... 3Noted cardiologist, Dr.Nissen on Avandia

Learning Curve ............... 6Dismantling Avandia, Actosand TZDs

Conference Pearls .......... 9Live from DT, EASD, AADEand TCOYD

Logbook.......................... 17Ready, steady, camp!

SUM Musings ................ 20

Kerri downloads from day 1

Glos diaTribe .................. 22Oh the things we do

Test Drive ........................ 23Alisas ally, Alli.

Profile .............................. 24Stephen Covey and the 7Habits of Highly EffectivePeople with Diabetes

Trial Watch ...................... 25Ultra-rapid insulin andstudies for grandparents

and grandchildren

What Were Reading ...... 26Sneak preview: This LittleDiabetes Book You Needto Read and My TCOYDnewsletter

NewNowNext ................ 28Buses, ports and cubes

in this issue

research and product news for people with diabetes

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


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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 staffEditor in Chief

Kelly L. Close

Managing Editor

James S. Hirsch

Contributers

Kaku Armah

Daniel Belkin

Michael Chen

Jennifer Ho

Jenny Jin

Surya KunduSierra Walton

Mark Yachoan

Design

Gina Wilson

diaTribeadvisory board

Jennifer Block, RN, CDEDr. Zachary Bloomgarden, MD

Dr. Bruce Bode, MD

Dr. Nancy Bohannon, MD

Dr. Bruce Buckingham, MD

Dr. Wendell Cheatham, MD

Dr. Steven Edelman

Dr. Barry Ginsberg, MD, PhD

Debbie Hinnen, CDE

Dr. Irl Hirsch, MD

Jeff Hitchcock

Dr. Lois Jovanovic, MD

Dr. Francine Kaufman, MD

Dr. Aaron Kowalski, PhD

Mirasol Panlilio

Dr. William H. Polonsky, PhD

Michael Robinton

Jane Jeffrie Seley, NP, CDE

Dr. Paul Strumph, MD

Virginia Valentine, CDE

Dr. Howard Wolpert, MD

Gloria Yee, RN, CDE

quotable quotes

Something is going on with obesity, and it aint just eating at McDonalds.

Dr. Richard Atkinson, arguing recently that the obesity epidemic around the world is

caused by a virus.

The problem with reversing obesity is that in the short term, nothing feels better than

eating ice cream while watching TV; the negative consequences are all long-term.

Gary Foster, PhD, on the challenge of weight loss.

Decades of multidisciplinary research have transformed science fiction into scientific

possibility!

Dr. Philippe Halban, speaking at EASD about the pace and direction of scientific

research on beta cell regeneration.

Unfortunately, in this current environment where the FDA is unwilling to act, and is really

impotent in many ways, the only way we get action is to directly inform the public. I would

argue that while it made life tough and did create some anxiety, it also meant that a lot

of people that were being harmed by a drug got to talk to their physicians about it. A lotof physicians had the opportunity to change the therapy for their patients. Frankly, wide

public discussion of the Avandia affair has led to much more good than harm.

Dr. Nissen, arguing that his meta-analysis and the subsequent media firestorm were

good in the long-run for patients.

Type 3 diabetics the non-diabetic partners of diabetics always think they know it all.

Dr. Steve Edelman, discussing the challenges of a relationship between people with

and without diabetes at a recent TCOYD meeting.

Well-controlled diabetes is the leading cause of nothing.

Dr. Bill Polonsky underscoring that diabetes is, as he put it, not a death sentence.

fingersticks


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3continued on page 4

Dr. Nissen was named as one

of TIME Magazines 100 most

influential people in May 2007

diaTribe dialogue

Dr. Steven NissenDr. Steven Nissen is a highly regarded coronary artery disease researcher and

a vigilant activist in public health policy matters. He is currently the chairman of the

Department of Cardiovascular Medicine at the Cleveland Clinic and was previously the

president of the American College of Cardiology. Earlier this year, Dr. Nissen caused afirestorm when he published a study indicating that Avandia may increase the risk of

having a heart attack. Dr. Nissen is no stranger to controversy: his expressed concerns

that Vioxx might cause blood clots contributed to Mercks decision to withdraw the drug in

2004. This year, Dr. Nissen was named one of the 100 Most Influential People by Time

magazine.

In an interview with diaTribe Editor in Chief, Kelly Close, Dr. Nissen talks about his

view of the climate of diabetes care in the United States today and about the Avandia

controversy of late. After reading our interview with Dr. Nissen, it may be helpful to read

our Learning Curve about Avandia and the TZD class of drugs.

Kelly Close: Thank you so much for taking the time to speak with diaTribe, Dr. Nissen! Its a

real pleasure for us. To start with, were curious about how, as a cardiologist, you first became

interested in studying PPARS (the main biological target of drugs in the TZD class).

Dr. Steven Nissen: Well, it actually goes back quite a long ways. I was aware from the

very beginning that there were a lot of issues with PPAR drugs, which affect a very large

number of genes. We dont know what most of those genes do. Whenever you see a drug

like that, you always worry about off-target effects that the drug was not designed to

produce. My concerns accelerated in September of 2005 when muraglitazar came before

the FDA for approval.

I did not attend the hearing, but I did have an interest in the class of drug. The night

before the hearing, I looked at the FDAs briefing documents and immediately saw that

there was a rather large excess of adverse cardiovascular events in the patients whoreceived muraglitazar. And they were serious events: death, stroke, heart attack, that sort

of event. So I assumed that the FDA advisory panel would recommend unanimously that

muraglitazar not be approved.

As you may recall, they actually voted 8 to 1 to approve the drug. I was just shocked. I

immediately went into action and took the data from that FDA advisory panel, analyzed it

independently with my statistician, and published in JAMA a few weeks later that the drug

was doubling the risk of the really serious cardiovascular consequences of diabetes.

Then in September of last year, the DREAM trial was published, and if you will excuse

the pun, the DREAM trial was a nightmare. There was a drug, rosiglitazone (Avandia),

which reduced the incidence of new-onset diabetes by 60 or 70 percent. But all of the

cardiovascular events were going in the wrong direction.You want to prevent diabetes to avoid the complications of diabetes, the most important

of which is heart disease. Eighty percent of all diabetics will die of cardiovascular disease,

so this was very troubling.

Then the ADOPT trial was published, and the same thing happened. It showed a 33

percent excess of major adverse cardiovascular events.

Now the really big shocker was that just as I was getting ready to publish the

manuscript, I learned that GlaxoSmithKline, the maker of the drug, had actually done its

own analyses beginning in September of 2005. They actually submitted to the FDA that

their own analysis showed a statistically significant 31 percent increase in myocardial

T1/2

So I assumed that the

FDA advisory panelwould recommend

unanimously that

muraglitazar not be

approved. As you may

recall, they actually

voted 8 to 1 to approve

the drug. I was just

shocked.

PHOTOC

OURTESY

OFTHE

OFFICE

OFDR.NISSEN


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ischemic events (heart attacks). Theyd informed the FDA of this risk. But neither the FDA

nor the company informed any of the rest of us. I personally believe in the right of patients

and providers to know the totality of information on the benefits and risks of drugs.

Kelly:What do you think it says about endocrinology that it took a very noted cardiologist

to intervene in this matter?

Dr. Nissen: Endocrinologists have a serious difficulty. Theyve spent their entire livesbelieving that the most important thing about treating diabetes is to reduce hemoglobin

A1c, so theyve had a very glucose-centric view, and I simply dont agree. I believe that the

reason you want to lower HbA1c is to reduce the complications of diabetes. This singular

focus on blood sugar because thats what they could measure every day with finger sticks

and all of that has led to a misunderstanding of what it is that were trying to accomplish

when we give these drugs. With a PPAR (like Avandia) that causes myocardial infarctions,

fractures, macular edema, and heart failure I dont really care if it lowers blood sugar. Its

not of benefit to patients.

Kelly: From a patient perspective, when your meta-analysis came out from the New York

Times, it just kind of blindsided everyone. It caused a lot of anxiety. In retrospect, was

there a better way to disseminate the information so that so many people were not left so

concerned?

Dr. Nissen: Actually, I think we did exactly the right thing. And let me make a couple of

comments about this. First of all: the idea that I should have told the FDA first. The FDA

already knew! The company had told them two years earlier that the drug was causing this

effect. I went to the Congress because the FDA had chosen not to act.

Second point: it is very important to understand that when these things are handled in a

quiet fashion, you dont get change. Do you know that when you put a black box warning on

a drug that its sales are rarely affected at all? If the FDA had quietly relabeled rosiglitazone,

people would have continued to be exposed to the drug. The reason that its a good thing

that the media jumped all over this is that the drug is effectively not being used anymore.

Unfortunately, in this current environment where the FDA is unwilling to act, and is

really impotent in many ways, the only way we get action is to directly inform the public. I

would argue that while it made life tough and did create some anxiety, it also meant that a

lot of people that were being harmed by a drug got to talk to their physicians about it.

Kelly: Oh, thats interesting. Wow. Now, you had also complained that diabetologists were

not putting enough patients on statins (editors note these are drugs that reduce LDL-

cholesterol). Can you tell us a little more about that and what you might urge our readers to

ask their doctors?

Dr. Nissen:Well, our guidelines suggest that if you have diabetes, you should be ona statin, and yet when you look around the country, only 40 to 50 percent of diabetics

are actually on statins. This is why Im troubled by the glucose-centric approach to care.

We know statins reduce the risk of the most lethal complications of diabetes by 25 to 35

percent, and yet theyre not being used

Kelly: As you have emphasized, most diabetes patients do die of cardiovascular disease.

Can you talk a little bit about the changing roles of the endocrinologist and cardiologist and

if the fields are moving together?

I think we did exactlythe right thing. First ofall: the idea that I should

have told the FDA first.

The FDA already knew!

The company had told

them two years earlier

that the drug was

causing this effect. I

went to the Congress

because the FDA had

chosen not to act.If the FDA had quietlyrelabeled rosiglitazone,

people would have

continued to be exposed

to the drug. The reason

that its a good thing that

the media jumped allover this is that the drug

is effectively not being

used anymore.


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Dr. Nissen: They are moving together. I refer to myself as a diabeto-cardiologist. Only if

they have very complicated issues managing insulin regiments or so on do I refer them for

(an endocrinologist) consultation. I think that a cardiologist should manage diabetes. Now

Im very careful how I manage them, and you can bet they get statins. Almost all of them,

if they have acceptable renal (kidney) function, get metformin. Im very cautious about

sulfonylureas because of the cardiovascular issues with that class of drugs. And I do use

pioglitazone (Actos) in some patients if they have good ventricular function and are not at

risk for heart failure. Ive got a lot of patients that are on insulin glargine (Lantus) at nightand so on. I do treat their blood sugars, and I get their HbA1cs down, but I also treat them

for their global risks.

Kelly: Speaking of global risk, what about weight? Do you use GLP-1 (small protein which

causes lowering of blood sugar) agonists, for example (Byetta is the only approved GLP-1

agonist)?

Dr. Nissen: Yes, I do. The other thing that Im probably much more aggressive about than

most endocrinologists is blood pressure control.

Kelly: Thats good for our readers to consider to and to ask their doctors and educatorsabout. What is your view about whether or not Avandia should stay on the market?

Dr. Nissen: Well, let me put it to you this way. I have deliberately avoided calling for

its removal. I was very disappointed in the performance of that advisory panel, frankly. I

mean, theres logic to voting 20 to 3 that the drug increases cardiovascular risk, but then to

not recommend decisive action is a little hard to understand.

Kelly: How would you explain that?

Dr. Nissen: Well, let me tell you something that you need to understand here: In these

matters, courage is very rare. No one understands the FDA better than I do as an outsider.

These panel meetings are in front of all your peers, knowing that the pharmaceutical

industry is with whom everybody works and is really keen on not having you take decisive

action. People just dont stick their necks out. And thats exactly what you saw.

Kelly: Hmm thats a lot for us to think about! From a patient perspective, is there any

other advice that you have? I know some patients are very concerned because they go ask

their doctors and their doctors only have all of five minutes to spend with them.

Dr. Nissen: Well, thats why patient empowerment is so important. I personally believe

that were in an era now when patients need to be better informed. You know, my patients

have been to the Internet. Often, when they come to see me, they have already looked this

up. And if your doctor is reluctant to take the time to talk to you about your concerns, getanother doctor.

Kelly: I guess were just sort of worried that the number of internists is falling and the

number of endocrinologists is falling. So maybe they all have to get cardiologists!

Dr. Nissen:Well, maybe more cardiologists need to start treating diabetes.

Kelly: What would make that happen?

The ADA recommendsthese guidelines:

A1c:

40 mg/dl in men

>50 mg/dl in women

Triglycerides:< 150 mg/dl

Talk to your healthcareprovider about the

right targets for you.

These panel meetingsare in front of all yourpeers, knowing that the

pharmaceutical industry

is with whom everybody

works and is really keen

on not having you take

decisive action. People

just dont stick their

necks out.

Reference: 2005 American

Diabetes Association Guidelines


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6

Dr. Nissen: Oh, I think you have to educate cardiologists better about it. I still refer

patients if I cant successfully manage them and I get great help. But I also dont act like Im

deaf, dumb, and blind when a patient with diabetes comes in my office with heart disease.

Kelly: Thats interesting. Is there any other advice you would give patients? An aspirin a

day, anything like that not to be too formulaic!

Dr. Nissen: Theres no cookie-cutter formula. It all has to be customized. My advice isto find a doctor who takes the time to explain it to you, to talk to you about what you need

to do. Take your own blood pressure and make sure it reaches the guidelines that are

recommended. Check your blood sugar often. Be an informed patient. Stay on top of your

disease and youll do a lot better. Its really tough. Weve just got to keep at it. Organizations

that have published newsletters like yours are really important because youre going

directly to the patients. Frankly, theres no better advocate for your health care than you.

Kelly: This has really been terrific; we appreciate your taking the time to speak with us.

In the interest of full disclosure, the Cleveland Clinic notes that it receives Research

support for clinical trials (from) AstraZeneca, Eli Lilly, Takeda, Sankyo, Sanofi-Aventis,(and) Pfizer. All reimbursement is directed to the Cardiovascular Coordinating Center

at the Cleveland Clinic (C5). No personal reimbursement is accepted for directing or

participating in clinical trials. Companies are directed to pay any consulting fees directly

to charity. No reimbursement is paid to Dr. Nissen and there is no tax deduction involved.

learning curve

Dismantling Avandia, Actos and TZDs

By Mark Yarchoan

First introduced into the market in 1999, Avandia quickly became one of the best-

selling diabetes drugs on the market, with approximately one million users in

America within seven years. However, in May 2007, Dr. Steven Nissen (interviewed

in this issue of diaTribe) and his colleague Kathy Wolski published a meta-analysis (a

pooled analysis of multiple studies) in the New England Journal of Medicine showing that

Avandia may increase the risk of heart attack by 43 percent. The findings made headlines in

major newspapers, and even prompted Congress to investigate if the FDA had mishandled

the approval of Avandia.

The events, compounded by the white-hot media focus, induced fear and uncertainty

among some patients, and many patients promptly discontinued their use of the drug

sometimes without seeking the advice of a healthcare provider or without going onto anyother medication regardless of whether they saw a doctor or educator!

Months later, the Avandia debate has died down somewhat. Following an FDA

advisory panel review, the drug remains on the market, as does a similar drug called Actos

although both drugs now carry a black box warning, the most severe warning issued

by the FDA, to address the risks of congestive heart failure. A recent letter to the FDA from

Senator Charles Grassley, who has been investigating the FDAs handling of drug-safety

issues, indicates that the FDA may have come closer to ordering the Avandia off the market

than previously thought. In his letter, Senator Grassley asked the FDA to confirm that an

continued on page 7

T2

The events

compounded by the

white-hot media focus,

induced fear and

uncertainty among

some patients, and

many patients promptly

discontinued their use

of Avandia sometimes

without seeking the

advice of a healthcare

provider.


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internal drug-safety oversight board had voted by a narrow 8-7 margin in early October to

keep Avandia on the market. If the FDA confirms this 8-7 vote, this will show that there is a

split within the agency about whether to pull Avandia off the market.

The agency isnt the only one split about Avandia. Many patients still dont know what

to think about Avandia, or Actos; and the jury isnt out among physicians, either. Here, we

provide some background information on the Avandia and Actos controversy.

Thiazo-what?Avandia and Actos belong to a class of drugs called thiazoladinediones (also called glitazars

or simply TZDs). Several other TZDs are in development, but Avandia and Actos are the

only TZDs currently on the market. A third TZD called troglitazone was removed from the

market by its manufacturer in 1999 due to serious adverse liver effects after more than 61

deaths.

TZDs can help people with type 2 diabetes lower blood sugar through reducing what

is called insulin resistance. The trial ADOPT showed that TZDs have greater durability

(work longer) than other classes of drugs like metformin or sulfonylureas. TZDs are

thought to work by binding to and activating the peroxisome proliferator-activated receptor

gamma (PPAR gamma). PPAR gamma is a protein that sits on the DNA in the nucleus of

cells. When acted on by a TZD, it makes the cell create proteins that reduce blood sugar andimprove insulin resistance.

DREAM and ADOPT

Two large clinical trials, DREAM and ADOPT, have demonstrated the efficacy of Avandia,

but have also raised questions about the drugs safety. DREAM was a large clinical study

evaluating the efficacy of Avandia in the prevention of type 2 diabetes in high-risk patients

(note: Avandia is not currently approved for this purpose and we doubt with all the worry

about safety that it will ever be approved for diabetes prevention). In this study, Avandia

was highly effective at preventing diabetes, but it was also associated with an increase in

heart failure, heart attack, and stroke compared to placebo. But, the numbers did not reach

statistical significance, and therefore could have been due to chance alone.

ADOPT was a long-term (four to six) year randomized study comparing metformin, the

sulfonylurea glyburide, and Avandia on the maintenance of glycemic control in patients

recently diagnosed with type 2 diabetes. Published in December of 2006, the study showed

that Avandia can control blood sugar for longer than either glyburide or metformin. This

was very encouraging, because glucose control is the key to preventing complications

associated with diabetes such as blindness or kidney disease.

However, patients in the Avandia treatment group had a 33% higher incidence of major

adverse cardiovascular events, including heart attack, congestive heart failure, and stroke.

As with the DREAM trial, the differences did not reach statistical significance, and may

therefore have arisen from chance alone. Dr. Nissen would later pool the data from both

the DREAM and ADOPT trial, as well as a number of smaller trials, to show Avandia was

consistently associated with an increased incidence of adverse cardiovascular events even ifno single trial reached statistical significance.

Also concerning, there was a higher incidence of fractures associated with Avandia in

women (though, quite peculiarly, not in men). Following the discovery that Avandia may

increase the risk of fractures in women, the FDA asked Takeda Pharmaceuticals, the maker

of Actos (the other TZD), to investigate the rate of fractures in patients taking Actos. Takeda

issued the so called Takeda Letter that indicated that, like Avandia, Actos increased bone

fracture rate in women, particularly in the lower and upper limbs. The increased risk of

fracture for both drugs appears to start after about one year of treatment.


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8

Actos vs. Avandia

The concerns about the cardiovascular risks of Avandia left a dark cloud over Actos. Both

drugs have similar efficacy in controlling blood glucose and generally have the same

side effects including fluid retention, leading to swelling and weight gain. However, one

intriguing difference between Actos and Avandia is their effect on lipid profiles. Avandia

increases LDL cholesterol (the bad cholesterol) and increases triglycerides, while Actos

has the opposite effect. If Avandias effects on lipids are causing the potential increase in

cardiovascular risk, then Actos would not be expected to share this risk.Dr. Nissen published another pooled analysis indicating that unlike Avandia, Actos is

not associated with increased heart attack risk. This was particularly significant given that

it was Dr. Nissen who originally sparked fears about Avandia. Dr. Nissen believes that the

difference between Avandia and Actos is due to their difference on lipids. Dr. Nissen and

others maintain that Actos and Avandia are completely different drugs and should not be

considered equals.

Many disagree both with Dr. Nissens analysis and his conclusions. As the maker of

Avandia and others contend, there are no head-to-head comparisons of Actos and Avandia,

and it is very difficult to compare their respective risks. It is conceivable that Actos and

Avandia actually have identical risks. Dr. Nissens analysis of pioglitazone was based on a

relatively small number of studies, and a single study the PROactive study contributedmost of the data, and the patients in this trial were at a high risk of cardiovascular disease.

What Now?

Controversy continues to surround Avandia and Actos. Some health care providers believe

that only Avandia increases cardiovascular risk, some say both Avandia and Actos do;

others argue that neither significantly increases cardiovascular risk or that any risk

is highly outweighed by the potential benefits. Some questions about Avandia may be

answered in 2009 when the so called RECORD trial concludes (a large, multiyear trial of

Avandia). However, an interim analysis published on June 5 was inconclusive, and it is

quite possible that the final analysis will be inconclusive as well.

At the EASD Annual Meeting in Amsterdam in September, Dr. Richard Nesto likened

the concerns about Avandia to the concerns about the safety of anti-depressants in 2004,

which scared users and curbed their use, particularly in teenagers. As a result, after a

decade of falling suicide rates in teenagers, the suicide rate started to rise in 2004. Dr.

Nestos message was that making incorrect safety judgments for drugs that work can

make society worse off, and media pressure can be unhelpful when trying to take difficult

decisions on balance of evidence. This lesson, he feels, is highly applicable to Avandia

he believes that the excessive focus on safety is taking away from its potential benefits in

glucose control.

Many others such as Dr. Nissen believe that there is no reason to use Avandia given that

there are other options namely Actos, which is equally effective and may be safer. Other

health care providers believe that TZDs should be avoided altogether given the potential

risks, or should left as a last resort when other oral agents have failed. As the debate carrieson, we hope that a safer generation of so called selective TZDs is on the way drugs that

will work better, decrease LDL cholesterol, increase HDL cholesterol, and have minimal

side effects One can always hope. Well certainly be on the lookout for early data to show

to you! In the meantime, if you have any questions about how Avandia or Actos affect you,

then speak to your health care professional.

Dr. Nissen published

another pooled analysis

indicating that unlike

Avandia, Actos is

not associated with

increased heart attack

risk. This was particularly

significant given that

it was Dr. Nissen who

originally sparked fears

about Avandia.


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continued on page 10

conference pearls

Seventh Annual Diabetes Technology Meeting(San Francisco, October 25th 27th)

We will be back next issue with more from the Diabetes Technology meeting for now, we

describe below just the keynote talk from Dr. Richard Kahn, Chief Scientific and Medical

Officer of the ADA. To start, Dr. Kahn provided a fascinating history of diabetes care,

highlighting that the cost and complexity of treating diabetes has increased.

First there was only insulin. Then, in the 1950s/1960s, oral drugs were developed and

diabetes care was no longer a simple proposition. In 1964, test strips came about, and

in the 1970s the A1c test was invented. Our advisory board pointed out that the A1c test

was actually invented in the 60s!! Since the 1970s there has been a blizzard of new

discoveries, resulting in more data, risks, costs, and complexities. Kahn suggested that the

medical industry established enormous marketing budgets, causing patients to clamor

for the latest technology. Wow! Whats that all about? Last time I checked, my diabetes

equipment was helping me to live a far better, more healthy life, one that kept me out of

emergency rooms and in the thick of life. Dr. Kahn continued by explaining that new developments were often

justified by trials he implied were sub-par. There were almost no limits or

constraints to the use of new diabetes technology, he claimed. We would agree more

evidence should be produced to show the value of technology; on the other hand, we also

believe many trials are difficult to execute in a real world environment. We thought it was

surprising that Dr. Kahn didnt mention that patients do have fewer complications today

than they did in the 1950s, that they live longer, and that they have, at least to some extent,

a higher quality of life due to better blood glucose monitors, insulin delivery systems, and

better, more stable drugs/insulin.

Per Dr. Kahn, as a result of new tools and complexities, the cost of healthcare

in the US soared from a small percent of GDP in the 1970s to 16 percent of GDP

in 2006 this amounts to about $7,100 on healthcare per person per year. America does not

get its moneys worth, he said. Americans spend more per capita than in any other country,

even though health outcomes lag behind many other countries. We would certainly agree that

America is not the best health system globally we would also argue that there are much larger

problems than payments for technology namely the lack of payments to healthcare providers

to work comprehensively with patients who are chronically ill.

Diabetes care contributes significantly to Americas healthcare costs. Dr.

Kahn emphasized that diabetes costs Medicare a third of its entire budget. Self-monitoring

costs taxpayers over $1 billion even though there hasnt been a single randomized, control

trial demonstrating benefit. In spite of tremendous spending, the quality of diabetes care

in America leaves much to be desired, he said. We would certainly agree that the quality

of diabetes care in the US could be dramatically improved but we would cite systemicproblems as a bigger culprit than the cost of new technology.

Looking to the future, Dr. Kahn believes that technology will need to bring

simplicity rather than complexity, and will need to cut costs rather than increase

costs.As health care costs rise faster than inflation, accountability (value provided per dollar

spent) becomes more important, he says. We absolutely agree with him on this point and

believe most patients and healthcare providers would! As more health care costs are shifted

to the patient, Dr. Kahn claimed patients will begin wondering why new technologies increase

costs rather than reduce costs, and the patient will begin looking for better value. In the future,

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There were almost no

limits or constraints to

the use of new diabetes

technology, he claimed.

We would certainly

agree that America

is not the best health

system globally in some

respects but largely it

is reimbursement woes

(absence of payments for

education, for physician

care, for drugs, and for

technology) that need to

be addressed.


10/28

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10



diabetes technology will need to be more effective, timely, safer, patient centered, efficient, and

equitable (these are so called systems of care improvements).

Compliance is certainly an issue. Dr. Kahn said that over 70 percent of diabetes

patients dont take their diabetes medications properly, and a technology that could improve

patient compliance would improve outcomes tremendously. Technology should identify and

reduce errors, rather than add ways to make errors. Gadgets that add complexity will receive

more scrutiny than gadgets that simplify diabetes care. There will be a new equilibrium

favoring improvements in systems of care advances as opposed to new fancy and expensivetechnology. We certainly believe medication adherence could be improved significantly but

we dont think not reimbursing diabetes drugs and technology is the best way to get there!

He also didnt acknowledge that sometimes side effects are the reason people dont continue

to take their medicine. Blaming that on the patient is counter-productive at best. Improving

reimbursement for doctors and educators would be a start to enhancing care. Diabetes is

complicated and patients deserve more time with their healthcare professionals.

During Q&A, Dr. Kahn joked that the most cost effective solution in terms

of healthcare expense would be to urge every American to begin smoking at

age 15. This was not met with much appreciation from the audience from what we could tell.

Overall, we are concerned that Dr. Kahns views may become a platform

and that they will have negative implications for pump and continuous glucosemonitoring reimbursement in particular.We certainly agree with Dr. Kahn that the

right evidence should be produced to demonstrate value of diabetes technology we also

think from a patient perspective its complicated because randomized controlled trials dont

always mimic the real world. We know that some in the audience felt that Dr. Kahn made

some asides suggesting that technology like insulin pumps and continuous monitoring (and

to some extent even self blood glucose monitoring) were threatened or shouldnt be valued

or reimbursed. If that is the case, this shows very little, if any, value to patients, families,

healthcare providers, payors. The ADA has always been a valuable force and we look to

themfor leadership in advocating for improved cost control,new products and technology,

and reimbursement for products and healthcare providers.

You can see the text to Dr. Kahns speech at the ADA website under healthcare

professionals or go to this link: http://professional.diabetes.org/News_Display.

aspx?TYP=9&CID=57894 . Some asides made by Dr. Kahn that were spoken are missing

in the written version. As noted, we very much appreciate Dr. Kahns role, we agree with

much of the speech, and hope that all of us can work toward better reimbursement for

diabetes technology and drugs and for better reimbursement for physician and educator

time spent with us as patients.

European Association for the Study of Diabetes(Amsterdam, September 17th-21st, 2007)

In September, the diaTribe team traveled to Amsterdam to attend the 43rd AnnualMeeting of the European Association for the Study of Diabetes (EASD). This year, it

attracted over 14,500 participants. Compared to its American counterpart, the annual

meeting of the American Diabetes Association (ADA), EASD was most focused on basic

science and insulin therapy. See below for our EASD Pearls.

The name of the game at EASD? Intensification.Whether discussing glycemic

control, macrovascular events (heart attacks, strokes) prevention, or insulin initiation,

presenters and chairs kept citing the need for faster, tighter, and more comprehensive

diabetes management. Whew, this puts the pressure on us as patients! Some of the fields

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Its unfortunate that one

of the ADAs highest staff

members seems to feel

technology like insulin

pumps and CGM (and

to some extent event

SMBG) show very little,

if any, value to patients,

healthcare providers,

payors, or average

Americans.

ILLUSTRATION:DANIELBELKIN

Amsterdam was a fabulous

location for EASD


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leading researchers called on all doctors and nurses to be more aggressive

in fighting diabeteschange a diabetes management regimen before it

fails, they say, and before inadequate management raises our risk of poor

health outcomes. This means setting ambitious A1c goals, trying for better

post-meal glucose control, and using combination therapy.

All things continuous! Continuous glucose information and

continuous subcutaneous insulin infusion (CSII or insulin pumping)

both yield better control and higher patient satisfaction. We wouldagree with this! Several presentations throughout the week suggested

that continuous monitoring translates into better glucose management.

Pumps also make for better glucose results, particularly in groups such

as children, overweight individuals with type 2, and pregnant women with type 1. CSII is

associated with less fear of hypoglycemia, less concern about diet restrictions, and higher

treatment satisfaction despite the fact that researchers said pumps can be hard to figure out

how to use (they call this the complexity factor we are lobbying for more user-settable

settings we can just all set personally so we can use and ignore features as we wish!).

Appropriately enough, given the theme of intensification, several talks

at EASD predicted a trend toward more insulin therapy for type 2 patients.

Insulin, no longer just the heavy-duty machinery for reigning in abnormal bloodglucose, should be considered a positive therapy for positive results. Taking insulin

earlier is associated with tighter glycemic control in the short-term and reduced rates of

cardiovascular events and hypoglycemia in the long-term, in addition to improved micro-

and macrovascular health. The need for providers to get positive (and become more

persuasive with us, the patients!) on insulin therapy is clear. In-session surveys showed tha

attendees believe needle fear is the #1 reason patients do not want to start insulin. Hmm,

do we agree with that as patients?! Furthermore, data on type 2 patient opinions show

that few believe insulin will help them manage their diabetes better, and almost a third of

physicians postpone insulin as long as possible. Thats a problem! If youre A1c is over 7 and

you cant get it down, we suggest you talk to your doctor and ask if he or she would consider

any changes if they were you! Some people believe the 7 percent A1c goal will go down and

that we should be at more normal A1c levels, like Dr. Nancy Bohannon in San Francisco

so you might ask your doctor about that too.

More intensive management will require greater patient participation. To

meet postprandial glucose (PPG or after-meal glucose) targets, the International Diabetes

Federation (IDF) recommends that people taking insulin should test three times a day,

including one test at least two hours after a meal. These guidelines might affect people with

prediabetes, too, since they are based on PPG. Shifting toward taking earlier insulin also

places greater responsibility on patients, since insulin therapy requires patients to get some

significant education on dosing, carb counting, and administration.

The Relationship between Insulin Sensitivity and Cardiovascular risk

(RISC) trial results show widespread benefits of physical activity. More evidence

that we have to get out and move! While exercise and lifestyle intervention were notcentral themes of the conference, impressive data from this trial suggest many benefits

from all forms of physical activity. Total activity, not just intense exercise, improves

insulin sensitivity, and increased activity is associated with improved insulin sensitivity

independently of waist circumference. The bottom line is that moving during the day is

extremely beneficial, irrespective of intensity.

Once again, when it comes to reducing cardiovascular risk, the best tactics

involve intense treatment. Cardiovascular (CV) risk is best reduced through tight blood

glucose control and intensive therapy, including early insulin initiation. The importance

PHOTO:MARKYARCHOAN

PHOTO:MARKYARCHOAN

The exhibit floor at EASD

quite the marketplace of

the latest diabetes tools and

products.

Healthcare providers browsing

the exhibitions at EASD


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of glycemia in cardiovascular health is indisputable; 69 percent and 39 percent of patients

admitted for acute myocardial infarction (MI or heart attack) or stroke test positive

for impaired glucose tolerance (IGT) and undiagnosed type 2 diabetes, respectively.

Furthermore, the most common risk factor for CV events in individuals less than 45 years

is undiagnosed metabolic disorders and obesity. The American College of Cardiology is

working on new guidelines that demand glucose testing before patients admitted to a

hospital for acute cardiovascular conditions can be released.

Finally released, a new system for reporting blood glucose. Results from onetrial looking at average blood glucose control and A1c have identified a new equation to

make numerical assessments of glycemic control more accessible to patients. Researchers

hope patients will find it easier to integrate this information into their management

behaviors and improve control because the average glucose scale matches that of glucose

meters. Heres a rough idea of how A1c translates to meter readings:

6 percent = 126 mg/dl (7 mmol/L)

7 percent = 155 mg/dl (8.6 mmol/L)




Greater attention must be given to depression in diabetes. The associationbetween diabetes, depression, and adherence exposes the need for new mental health

screening guidelines to support providers in identifying patients whose physical health

cannot improve without attention to mental health.

American Association of Diabetes Educators(St. Louis, August 1st 4th, 2007)

This years AADE in August in St. Louis was extremely educational, as always. We tip our

hats to the organizers for putting together an amazing faculty of speakers especially for

the well-attended general sessions that set the tone for four days of insights. .

We applaud Former Arkansas Governor, Mike Huckabees initiative intaking on diabetes and obesity, but we think he should also advocate that the

government act directly. Mr. Huckabee argued that the government wont do anything

until theres mass advocacy from the public, but we think its going to have to be a more

two-way process patients will have to advocate, the government will have to take action,

and it will (unfortunately) be an incremental process on both sides. In our view, the

government should take a harder look at reforming food subsidies, for example subsidizing

fruit and vegetables. It could also be more proactive in helping businesses and insurers

realize that theyll be more efficient and pay less in the long term (for health costs) if they

invest in preventive care.

We dont have a health care system, we have a sick care system. We have

a health crisis, which is leading to a health care crisis, and not vice versa. Because we arenot focused on prevention, 80 percent of health care expenditures are spent on preventable

chronic diseases, which are mostly due to overeating, under-exercising, and smoking. We

spend more of our GDP on health care than any other country: 17 percent, compared with

10.5 percent in Switzerland, 9.5 percent for most European countries, and down from there

Notably, pump and CGM expert, Dr. Bruce Bode, said that insurance

companies were likely waiting to see hypoglycemia-related car accidents

and comas before they think seriously about reimbursement for continuous

glucose sensors. He added that not everybody shows marked improvement simply by

using a CGM device. The STAR 1 trial showed that the best results are seen in patients who

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PHOTO:MARKYARCHOAN

Former Arkansas Governer and

2008 presidential candidate,

Mike Huckabee during his

opening address at AADE


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have A1c percentages already below 8 percent. In addition, preliminary results from one of

his ongoing studies have shown the need for continued use of sensors in order to maintain

improvements in A1c. That makes sense we also understand that people who look at their

CGM devices the most frequently do the best that makes sense too! If you watch closely,

youre more likely to make changes, of course, especially if youre on pump therapy and it

seems likely if you make frequent small changes, that obviates the need to bigger changes

and makes big big shifts less likely to be necessary.

If you have type 2 diabetes and your A1c is above 8 percent, Dr. Leahysays you need insulin and that if you take it, youll feel better! Dr. Leahy, a noted

endocrinologist from the University of Vermont, said it was great that insulin is now on

the same line as second-line therapy in the ADA guidelines. There was applause when he

said that people need to be put on insulin earlier. He said that it is imperative that primary

care physicians (PCPs) know how to put people on basal insulin he said, Theres not

enough of us, and many people are going to need it. Dr. Leahy said he would like to change

stepped therapy, such that the first stage is one or two oral drugs, the second stage is basal

insulin, and the third stage is basal insulin plus another insulin dose at the biggest meal.

Dr. Leahy is also a big believer in Symlin, an antihyperglycemic drug reported to also help

with weight loss in type 1s and insulin-dependent type 2s. As always talk to your physician

before altering your therapy. Dr. Leahy said he often lectures to PCPs. Responding to the prompt, My biggest

problem in starting insulin is: the first answer from PCPs is always: My patients wont

do it (other options are, Not sure what to do, Not sufficient time or support staff, and

Fear of weight gain or hypoglycemia). The main problem PCPs say their patients cite

is fear of injection. However, less than 50 percent of PCPs have ever (once in their life)

given a saline injection in the office. Its daunting that they dont know these things. We

personally believe that physician resistance might be just as big or bigger than patient

resistance especially since some doctors dont think they have the time to teach insulin,

given the reimbursement rates for education are almost nil!

To the nearly full hall, the highly-respected Dr. James Gavin of Emory

University gave a well-received talk about diabetes outcome disparities among

ethnic groups in the US.African Americans are 1.8 times as likely to have diabetes as

whites (about 13 percent of African Americans have diabetes) and have 3-5 times the risk

of lower-limb amputations, as well as increased risk of heart attack, kidney disease, and

premature death. Minority groups have lower frequency of home-glucose testing than

whites and less use of intensive insulin therapy. Solutions include culturally appropriate

programs this should not be taken lightly that are economically feasible, with more

aggressive insulin and combination therapy in minority groups.

There are real genetic differences among ethnicities, but the epidemic in

high-risk minorities is mostly environment-driven. Our genes havent changed in

the last 30 years, but diabetes has tripled. Numerous barriers exist for improved outcomes:

lack of awareness of the disease and its consequences, insufficient access to patient

education, delayed diagnosis, living in a disadvantaged community, distrust of medicalprofessionals, failure to treat early and aggressively, and the requirement of complex

medical interventions (which means more time and resources) from the provider.

We need especially aggressive treatment for minorities. Dr. Gavin pointed

out that the expert National Minority Quality Forum has recommended, given earlier

disease onset among minorities, the greater need to attempt to alter the natural history of

the disease and to use more intensive therapy with earlier combo therapy and with insulin.

He emphasized that the National Diabetes Education Program (NDEP) is working to

disseminate information about diabetes and encouraged health care providers to use and

refer their patients to its resources.



Minority groups have

lower frequency of

home-glucose testing

than whites and less

use of intensive insulin

therapy. Solutions include

culturally appropriate

programs this should

not be taken lightly

that are economically

feasible, with more

aggressive insulin and

combination therapy in

minority groups.


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14

The amazing diabetes advocate Dr. Francine Kaufman (Childrens Hospital,

Los Angeles) distinguished between type 1, type 2, and maturity onset diabetes

of the young (MODY). In children, about 90 percent of diabetes is type 1, less than 10

percent is type 2, and only a small amount (1-3 percent) is MODY. Generally type 2 and

monogenic (caused by a mutated single gene) diabetes are post-puberty diseases, although

recently there has been a great increase in the number of pre-puberty cases of each. It is often

difficult to differentiate type 1 from type 2 diabetes in overweight adolescents. Genetic testing

is commercially available and should be considered for any child who fits the MODY diabetesprofile white, not obese, and does not have Acanthosis nigricans, a skin hyperpigmentation

often found on the back of the neck or other body folds.

Puberty increases insulin resistance, even in normal weight children. Most

children experience a 30 percent increase in insulin requirements during puberty. To date,

17.1 percent of children (age 2-17) are obese, and many of them already have high insulin

resistance prior to puberty; this is a fast track to type 2 diabetes. The ratio of girls with

diabetes to boys with diabetes is about 1.7 to 1.

Dr. Kaufman discussed the situation of type 1s who gain weight and

develop type 2. This situation is growing more common, and Dr. Kauffman suggested

that metformin should be considered in such cases. In one study of type 1s, metformin

lowered A1cs by 0.6 percent and reduced the insulin dosage by about 20 percent. Inanother study, metformin had similar benefits, and additionally caused significant weight

loss and lowered LDL cholesterol. More studies are required to investigate metformin

treatment in type 1s.

Dr. Sanchez of the University of Texas School of Public Health delivered

an interesting talk in which he spoke about the need for health reform and

improvements in health literacy, especially among minorities. He called for

better integration of public health and medical care as well as better prioritization and

reimbursement of interventions that most efficiently optimize health. He was often

interrupted by bursts of applause from the responsive 1,500+ member audience. He

highlighted the need for health care reform to create patient-centered, primary care based,

prevention-focused and community-oriented interventions. He stressed the need for better

integration of public health and medical care since patients spend so little time in doctors

offices and so much time where they earn, learn, buy, lie, pray, and play.

The health care industry needs to reexamine its priorities.While lauding the

value of scientific research, Dr. Sanchez pointed out that getting people to quit smoking

may be a more immediately effective tool for diabetes treatment than extended research

into beta blockers. He noted that if resources were diverted from biomedical research into

education, diabetes patients would be in better position to control their disease or avoid it

altogether. He cited statistics showing $31,300 spent per quality adjusted life year (QALY)

for metformin as opposed to $1,100 per QALY for lifestyle intervention.

During pregnancy, women should have fasting blood sugar under 96 mg/

dL (5.3 mmol), two-hour post-prandial blood glucose (PPG)


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15

requirements drop back to normal levels or below normal levels after pregnancy, though

nursing can cause more glycemic variability than usual as well.

Insulin is the gold standard for pregnancy for type 2 patients. Oral agents

are not generally recommended for use during pregnancy. There have been no studies

yet of Apidra, Lantus, or Levemir during pregnancy. Some studies have found that both

insulin and glyburide are equally successful at any given level of fasting blood glucose.

Recommendations published recently by the 5th International Workshop - Conference

on Gestational Diabetes suggested that glyburide is a useful adjunct (additional therapy)to medical nutrition therapy and physical activity in women with gestational diabetes.

Glyburide may be less successful in obese patients or those with marked hyperglycemia

earlier in pregnancy. The same international body does not recommend metformin, Byetta,

or Symlin for the management of diabetes during pregnancy as trials have not been done to

determine safety.

It is easy to come up with a list of four or more cheap and safe medications

patients should take daily ask your healthcare team if a daily dose of the

following is right for you: aspirin, an ACE inhibitor for hypertension, a statin daily

(probably, not absolutely), and antioxidants. Switching a totally different category, it

sounds like were going to see a lot more about fish oils in the literature in the future, and

its something we should probably all talk to our doctors or educators about taking. Change is possible, but its going to take a generation.We need to first change

attitude via awareness, and then change the environment, like better snacks in schools,

walking paths, escalators that are turned off at least some of the time!. The action phase

is when we get laws once new behavioral norms are in place. Note that this comes after

societal changes we cant legislate proactively or it will be a battle about personal rights.

Universal coverage is not as critical a goal as universal health, he said. We can get to

universal coverage if we want to, but the most important change to make is a change

in culture. The solution is not as simple as laws, governing food in schools, for example

though, he added, these are good goals (he worked with President Clinton to get sugary

soft drinks out of school cafeterias).

The fabulous St. Louis Arch added

a certain je ne sais quoi to the

AADE conference.


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Taking Control of Your Diabetes(Santa Clara, September 15th, 2007)

The Taking Control of Your Diabetes (TCOYD) Conference was held on September 15th

2007, in Santa Clara, CA. From Hawaii to Minneapolis, our very own advisory board

member, Dr. Edelman and his team hold about a dozen TCOYD meetings every year the

biggest one in San Diego (on December 8 this year). The Santa Clara meeting was labeled

by diabetes veterans as providing reestablished focus in a positive and affirming waywhile neophytes said they learned more today than (they) ever knew was available.

About 1500 people attended and most break-out sessions were filled to capacity.

Dr. Edelman lamented the statistic that 92 percent of Europeans were

using insulin pens compared to only 12 percent in the U.S., saying, If you are not

using a pen, you are in the dark ages. Sadly we also realized this while attending the EASD

conference many more type 2 patients in Europe take insulin at all, for a start!

Still on devices, he described continuous glucose monitoring as the biggest

advance in type 1 diabetes therapy since the discovery of insulin. It provides an

important step toward the artificial pancreas for diabetes. Stem cell research/gene therapy,

however, could also provide a potential cure one day he says. Dr. Edelman himself has type

1 and we always listen closely to everything he says about diabetes since we know he has anextra incentive to be in the loop!

He ended his presentation on a poignant quote from Larry Verity, an

exercise physiologist: If you cannot find time for exercise, you will have to find time

for disease. He recommended yearly dilated eye exams (retinopathy) , cholesterol panels

(LDL, HDL and triglycerides), and regular visits to the dentist (tooth and gum disease).

Dr. Polonskys presentation was aptly titled Psychological Secrets for

Effective Self-Management. The bottom-line message was that diabetes is tough and

it is not inhuman to make mistakes give yourself a break! At diaTribe, we know as well

as you do how important it is to find a balance between managing diabetes intensively and

having a life outside of diabetes.

Dr. Polonsky likened diabetes management to a job that involved a lot of

work, with minimal vacation time and pretty bad pay boy can we relate to

that! He emphasized that diabetes was not a death sentence and elegantly corrected the

notion that diabetes is the leading cause of blindness, amputation, and kidney failure. He

pointed out that it is poorly controlled diabetes that causes these complications. Well

controlled diabetes is the leading cause of nothing. He quoted Sir William Osler, who

is reputed to have said, The easiest way to live well is to develop a chronic disease and

take good care of yourself. In Joslins 50-year Medalist Study of groups of people who

were diagnosed with diabetes 50-60, 60-69 or >70 years ago, researchers suggest that

individuals with such long duration of type 1 diabetes may be protected from, or show

slower progression to, diabetic retinopathy. The study showed that about 50 percent of

the 50-60 year diabetic duration had retinopathy 44 percent and 27 percent respectively

for the 60-69 and >70 years of diabetes. Almost 50 percent of all groups had no significantmicrovascular complications. These statistics strongly support the idea that a diabetes

diagnosis is not necessarily a prediction of severe complications.

Dr. Polonsky described the use of smaller plates as a creative way to

monitor and control food intake. He added that focusing on other things like

television while eating often leads to mindless over-eating. Additionally, it is important

to make healthy foods easily accessible and keep the junk stashed away if not out of the

house completely. Learn more about his practice at the Behavioral Diabetes Institute at:

www.behavioraldiabetes.org.

T1/2

If you cannot find timefor exercise, you willhave to find time for

disease.

Well controlled diabetesis the leading cause ofnothing.


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Ruth Spirakis, a CDE and dietitian, advised diabetes patients to spread

carbohydrate intake throughout the day we know this will help us avoid spikes, though

its hard to schedule! She emphasized moderation over elimination (okay, goodwe werent

considering elimination anyway!) and urged patients to ask for low-fat or whole grain

substitutions while eating out. Check out UConns Rate Your Plate game at http://www.

sp.uconn.edu/~cthompso/.

Dr. Wargon drew attention to the need for proper foot care for patients.

He recommended a foot check on every doctors visit, checking shoes before wearing them,and avoiding home remedies and bathroom surgery for foot problems. Read more on

ADA guidelines to foot care at http://www.diabetes.org/type-2-diabetes/foot-care.jsp

logbook

Summer Camp: Carb Counting, Inspiration, and aSpecial Torch

By James S. Hirsch

Ididnt quite understand the torch.

In August, our family attended the Clara Barton Family Camp in

Oxford, Mass. During the rest of the summer, the camp is for girls with

diabetes Camp Joslin for boys is a 10-minute drive away but for five

days in August, across 200 acres of woodlands, hiking trails, and playing

fields, Clara Barton is the site for entire families to share bunks, count carbs

have a few laughs, and dry a few tears.

About 30 families attended this summer, each typically with a diabetic child who is

either too young or not quite ready for a diabetic sleep-away camp. (Many siblings attended

as well.) Our son, Garrett, who was diagnosed three years ago, is now 6, so next year, hell

be old enough for Camp Joslin.But as I said, I wasnt sure about the torch. The camp has a gift shop, and Garrett bought

a string necklace with a nickel-sized pewter ornament. On one side it said: Barton 1932,

a lovely reminder of the camps opening year. Engraved on the other side was a torch, with

five tiny stars billowing out like smoke.

Did the torch symbolize how the camp is trying to blaze a trail for better care? Or to be

a bright light for children with diabetes? Or was it a signal of our strength and vibrancy to

everyone around us? Or was the flaming icon suppose to connect generations of patients

who at this very camp and beyond have passed the torch of empathy, friendship, and

love?

I suspect Garrett just thought the fire was cool.

Regardless, we didnt have to worry about Garrett fitting in or having fun. He became

fast friends with two high-spirited brothers, ages 4 and 6, who shared our cabin on our

first afternoon, the 4-year-old asked Garrett, Will you be my best friend? and they were

soon planning post-camp play dates. Which was fine, except we live in the Boston area; and

they, in Los Angeles.

Each cabin was assigned a nurse, who registered the families when they arrived. Our

nurse, a stout woman with short-blond hair, came all the way from Texas.

Nurse: My name is Dorothy, but everyone calls me Bubbles.

Sheryl (my wife): Can I call you Dorothy?

Sheryl is a loving woman, but she doesnt forge intimate bonds with anyone whose name

Nurse: My name isDorothy, but everyonecalls me Bubbles.

Sheryl (my wife): Can I

call you Dorothy?

Sheryl is a loving

woman, but she doesnt

forge intimate bonds

with anyone whose

name evokes soap suds.


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18

evokes soap suds. Garrett had no such reservations. By the end of the first day, he was

running around the cabin, squealing, I want to blow Bubbles! I want to blow Bubbles!

Camps have a special place in the history of diabetes. The American Diabetes

Association now accredits 122 of them, and I dont know of any other childhood disease in

which these hospitals in the woods as they were first called play such an important

role. While the founder of the first camp, Dr. Elliott Joslin, was a visionary, I doubt that

even he foresaw what he was bequeathing.

After insulin was discovered in 1922, Joslin recognized the value in bringing togetherdiabetic children in a camp setting where they could have fun but also learn the basics of

diabetic self-management. While Joslin practiced in Boston, he was raised about 55 miles

west, in Oxford, and his eponymous camp was founded nearby in 1927. In addition to

medical staff and counselors, it had a laboratory with chemists who tested campers urine

samples for sugar. In 1932, Joslin joined with the Universalist women to create a camp for

diabetic girls, located on the grounds where the late Clara Barton was born. Barton, herself

a Universalist, had been a pioneering nurse and teacher best remembered for founding the

American Red Cross.

One can only imagine the experiences of those diabetic campers so many decades ago.

Nowadays, a family with a newly diagnosed child can be instantly connected, through the

Internet, to hundreds if not thousands of families going through the same experience. Chatrooms, support groups, blogs dare I say, even diaTribe create a genuine community.

But 20 years ago, let alone 75, a diabetic child was much more likely to feel isolated,

detached, and alone. Except at camp, where all the things that made the child feel different

were suddenly the norm. Actually, I dont need to imagine what those children experienced

long ago, because I experienced it myself when, in high school and college, I was a

counselor at a diabetic camp in Missouri. In a poignant but typical story, a fellow counselor

told me how she had arrived at camp late, and when she drove up, she looked down from

a slight hill and saw the entire operation more than 100 kids gathered around, talking,

laughing, carrying on. A long table stood with insulin vials, syringes, and alcohol swabs;

and everyone was getting ready to draw up their doses and give their injections. It was all so

. . . normal.

My friend told me how for the first time in her life, she was no longer the outsider. So

there was only one thing left to do. She wept.

As I discovered at Clara Barton this summer, camp has changed a lot since then, just as

diabetes has. When I was a counselor, everyone was on the same number of shots (two) and

mostly the same insulins (Eli Lillys NPH and Regular), and we counselors, ready to save

the world, would walk around with our clipboards, holding medical sheets with urine test

numbers and a plastic bag with sugar packs for lows.

At Clara Barton, the therapies were as different as the kids, who, collectively, had four

different types of insulin pumps, at least that many daily injection routines, and God knows

how many diets. The counselors were now walking apothecaries, hauling glucose meters,

glucose strips, alcohol swabs, tiny lancets, and glucose tabs.

The Family Camp cost $250 per person, plus a $50 registration fee. The facilitiescouldnt have been nicer, with modern log cabins and dining hall, swimming pool, well-

groomed playing fields, a barn-like theater hall, a conference room, and offices. During

the day, the kids had their own activities sports, swimming, arts and crafts, instruction

on health and diet and even the siblings had special sessions to discuss having a diabetic

brother or sister; Garretts older sister, Amanda, was one of the attendees. The parents also

had break-out sessions. Some were more useful than others. We had, for example, a very

good social worker who allowed us to vent our frustrations and who encouraged us to build

a support network at home.


A long table stood with

insulin vials, syringes,

and alcohol swabs; and

everyone was getting

ready to draw up their

doses and give their

injections. It was all

so normal.

My friend told me howfor the first time in her

life, she was no longer

the outsider. So there

was only one thing left

to do. She wept.


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On another occasion, we had a session for yoga. I thought they said yogurt so I got

there early. The woman kept telling me to relax, but all I could think about were my emails.

Disaster.

Being with so many others and living in such close quarters there were 15 of us in our

cabin, including three counselors made us appreciate how smart and resourceful other

families are. For example, one night at midnight, a girl in our bunk who was on the pump

had a blood sugar of about 80 ml/dL which is a bit risky while sleeping. I thought the

parents would try to give her a snack. Instead, they suspended her basal insulin for an hourslightly raising her blood sugar without disturbing her sleep. Brilliant. We now do that for

Garrett.

Some ideas were less practical. At one session, a woman with a diabetic daughter spoke

to us about her very structured approach on running her household. Using Velcro, she

attaches the carb count on every item of food in the kitchen a depressing thought for

those of us who barely have time to put the food away, let alone tally the carbs. But we gave

the Velcro woman a lot of credit for her vigor.

The camp director asked the parents to stay on the camp grounds, but I will say that five

days, on camp grounds, can be a long time. By the third day, I was conspiring with another

father, a house painter from Connecticut, to make a jail break for coffee at Dunkin Donuts.

Some speakers tried to convey how much diabetes care has improved over the years, butthe parents, in describing their own fears and heartbreak, made clear how far we have to go

One mother said her child was rejected from a private school because of diabetes. Another

mother said her daughter once called 911 to ask for another mommy, because her mommy

was giving her too many shots. A father recounted how his young son asked, Who will

take care of me if youre not here?

Another mother said her son is going to help run a lemonade stand so he can find a

curse for diabetes, so he can eat more carbs.

But encouragement came from the diabetic counselors, some of whom spoke to us one

night in a break-out session. They talked about their struggles with parents, school, and the

entire balancing act of being a young adult and having diabetes. But theyve all persevered,

and they all discussed the indispensable role of camp a kick in the pants, one counselor

said, in forcing her to take responsibility for her own health.

Camps push you to your limit adventure programs include hiking to the top of

Mount Washington in New Hampshire, 6,200 feet above sea level and create enduring

friendships. They also cast a completely different light on a daily struggle. The great thing

about camp, one counselor noted, is that diabetes doesnt even exist here.

Said another counselor: I love diabetes, because its made me who I am. If there was

a cure, I wouldnt want it. In college, she wants to major in recreational service so I can

come to camp forever.

For all that camp may have changed over the years, the essentials remain the same.

Its about kids having fun raising the flag each morning, playing games during the day,

singing at the camp fire at night and being with other kids just like them. One boy told his

mother that he liked camp because for the first time, he didnt have to pull his shirt downover his insulin pump.

The highlight, for Garrett, was attempting the zip line, in which you strap a harness

around your waist, climb 50 feet up a tree, stand on a platform, attach yourself to a cable

that stretches between two trees, leap, and hang on as you zip down the line. You cant

really hurt yourself because youre attached to a rope held by a counselor on the ground.

Still, its difficult to climb the tree (you put your hands and feet on metal rods nailed across

the trunk), its not easy pulling yourself onto the platform, and ultimately it requires a

literal leap of faith.

On another occasion,we had a session foryoga. I thought they

said yogurt so I got

there early. The woman

kept telling me to relax,

but all I could think

about were my emails.

Disaster.

PHOTOC

OURTESYOFJIMH

IRSCH

Garrett Hirsch Brave

zip-liner and torch carrier.


20/28


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21

A Child Learns

I became aware of diabetes when I was in middle school. Or at least I remember becoming

aware of the fact that I was the only kid in my class who was testing her blood sugar

during quizzes. My friends walked me to the nurses office when I was low. My parents

created classroom care packages that explained diabetes, low blood sugar symptoms, and

emergency phone numbers, taking every precaution to make sure I felt like a normal kid.

And I did, for the most part.

When I was in 5th grade, another classmate had left a note in my locker about how shehated me because I was diabetic. It was the first time I had felt singled out, and it left a stain

on my heart, a dark moment in my memory and one that I havent forgotten about, even

now, so many years later. I locked it up and kept it close.

There were other times when I felt oddly exposed as a diabetic, like when we learned

about the pancreas in 4th grade and everyone turned around to look at me when the teacher

mentioned endocrine diseases like diabetes. There was also the time I had low blood

sugar just before lunch, and I had to eat my meal, after draining three juice boxes, in the

nurses office. Or the time I faked a low to get out of having to perform the obstacle course

in front of my classmates in my 8th grade gym class.

It wasnt until I attended a camp geared toward girls with diabetes Clara Barton Camp

in Massachusetts - that I met other kids like me.We compared stuffed animals. We talked about our silly middle school crushes. We also

all tested out blood sugars together in the morning, and we took out insulin as a group at

night. They, like me, didnt look diabetic. But they were. Spending summer after summer

at CBC as a kid proved that diabetes looked invisible on other kids, too, but it was there. I

wasnt alone.

I acknowledged the fact that I was diabetic. And I became comfortable with saying it out loud.

The Adult Emerges

Diabetic or not, the teenage years are riddled with expected angst. My battles about

boyfriends and pontifications on prom dresses were happening alongside arguments with

my mother about rogue blood sugars of 385 mg/dL.

Fiercely independent and determined not to be owned by diabetes, or anything for that

matter, I took over complete management of my disease in high school. This included

gaining my license, which opened double doors of freedom. Like any high school kid,

I tested the limits of curfews and curse words, but I also tested the limits of diabetic

responsibility. Faced with managing my own numbers and much of my own schedule, I

found myself rebelling against the constraints of my condition. I lied about the results on

my meter, sometimes dabbing a bit of rubbing alcohol on the test strip to produce a lower

result. I visited late-night fast food drive-thrus and drank beer at parties on the beach.

Unfortunately, this spiral of rebellion continued into my college years, coming to a

frightening peak as a junior, in the midst of my parents very troubling divorce and my

A1c of over 11 percent. I was confused. I was lost. I was scared and overwhelmed and my

frustration with life was taken out on my health.It took a letter from my endocrinologist, addressed to my primary care physician but

mistakenly sent to my home, to rip me from my self-destructive path. I opened the envelope and

skimmed along ... noting the typed-out elevated A1c, cholesterol levels, and a spike in my weight.

I came to a paragraph that was hand-written in that curly, familiar script of my doctor.

Kerri is going through some difficult times at the moment. She spent most of her time in

my office on the verge of tears. I am concerned.

It was a cold hand on my hot and tear-streaked face. And it started me on the road back

to taking care of myself.


When I was in 5th

grade, another

classmate had left a

note in my locker about

how she hated me

because I was diabetic.

It was the first time I

had felt singled out,and it left a stain on my

heart.

Like any high school

kid, I tested the limits

of curfews and curse

words, but I also tested

the limits of diabetic

responsibility. Faced

with managing my own

numbers and much of

my own schedule, I

found myself rebelling

against the constraints

of my condition.


22/28

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22

Owning Up

Looking back now, it seems like it happened so quickly. Its as though I blinked and my A1c

dropped from 11-something to 6-something. But it wasnt an overnight transformation,

not by a long shot. There were several months of debilitating low blood sugars. There was

one morning when the paramedics were called. There were discussions about the physical

and emotional implications of insulin pumping. There was that one phone call to my

endocrinologist in the middle of the night This is Kerri Morrone. I want to start pumping

as soon as possible! and there were the long weeks of classes leading up to my transitionto pump therapy.

There were the many jobs after college where I battled for medical insurance. There was that

first afternoon at the gym, followed by another, and another. I took control of my diabetes.

I Took Control of Myself.

Diabetes didnt make me smart, but being regimented and dedicated to achieving results

on a medical level may have made me work harder in school. Diabetes didnt make me

determined, but it may have contributed to my constant drive toward my ever-changing

definition of success.

Such perspective is gained from a chronic condition, regardless of its complications. It

doesnt define me, but the strongest parts of my personality may havebeen gently shaped by the perspective gained from having it.

Diabetes didnt make me love with such ease, but having tasted my own mortality makes

every hug, every laugh, every kiss that much more needed and appreciated.

I have lived with type 1 diabetes for twenty-one years. Fortunately, Ive never had to live

with it alone. Ive had the luxury of a supportive family and friends, but hard as they tried to

truly understand what it was like, they could only come so close.

Two years ago, I Googled diabetes and retrieved a list of possible complications and

a few advocacy Web sites in return. Far from my summers at Clara Barton Camp, yet

yearning for that same sense of community, I stumbled upon a handful of people with

diabetes who were

diatribe - research and product news for people with diabetes - issue #6

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