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24 February 2010

Diabetes Care: Avandia is a Symptom of the Problem with US Healthcare


My head was spinning from the webbed controversy over the type 2 diabetes drug, Avandia, which has been reported to have caused 304 deaths in the third quarter of 2009.
...once one of the biggest-selling drugs in the world. Driven in part by a multimillion-dollar advertising campaign, sales were $3.2 billion in 2006. But a 2007 study by a Cleveland Clinic cardiologist suggesting that the drug harmed the heart prompted the F.D.A. to issue a warning, and sales plunged. A committee of independent experts found in 2007 that Avandia might increase the risk of heart attack but recommended that it remain on the market, and an F.D.A. oversight board voted 8 to 7 to accept that advice. New York Times
Who is to blame here? I know a little something about the pharmaceutical industry--how drugs get to market, and how doctors and patients are informed. I have worked in a professional capacity with many global pharmaceutical companies and in many therapeutic areas, including diabetes. The benefits of the pharmaceutical industry’s advances in medical science and their development of treatments for incurable diseases far outweighs the risks associated with poor outcomes. However, I am not here to defend the industry. Glaxo Smithkline should pull Avandia off the market. But there is something even more important to recognize...

Avandia is a symptom of what’s wrong with healthcare and drug regulation in the United States. It is also a reflection of how poorly our physicians are educated. There are two major issues that Congress should be evaluating:

1. The expertise and ethics involved in FDA’s approval process for new drugs (NDAs). How did Avandia receive approval from the FDA – even with evidence of documented risks to diabetes patients?
2. How best practice care and guidelines are diffused and disseminated to those physicians (mostly primary care physicians) who treat patients with diabetes?

Reporting of the Avandia Scandal
I was shocked that none of the news programs or any of the press thought it important to address the complexities of type 2 diabetes as the Avandia scandal emerged. How can the dangers of a drug be discussed without addressing the disease? I’m not sure if this was a reluctance to get involved in the pathology behind the disease (too boring, too dry and too hard to explain) or if there is a general assumption that EVERONE knows enough about type 2 diabetes already. It is a gross assumption.

Type 2 diabetes (it accounts for 90-95% of all diabetes patients), Coronary Heart Disease
and Metabolic Syndrome (Insulin Resistance and Sydrome X) are terms that are tossed around interchangeably, but are rarely defined. In fact, Metabolic Syndrome has become somewhat clichéd – and often (inexcusably) overused as a euphemism for the overweight and under-educated. To make it simple Type 2 diabetes can be defined by two defects – the inability to secret insulin, and the body’s resistance to the action of insulin (breaking down sugar in the blood). These two defects are associated with dyslipidemia, obesity and hypertension (markers of Metabolic Syndrome) --which in turn are all risk factors for Coronary Heart Disease. You can have Metabolic Syndrome without having diabetes and you can have Coronary Heart/Vascular Disease without diabetes but every person with type 2 diabetes should also be treated for Heart Disease (CHD).

Furthermore, CHD is the leading cause of death (800,000 per year); diabetes accounts for 160,000-180,000 deaths per year and the leading cause of death for diabetes is – you guessed it – Coronary Heart disease. (How many of those 800,000 people who are reported to have died from CHD are actually people with type 2 diabetes, but undiagnosed?)

The first question is how did the FDA continue to approve a drug for market in 2007 if there was evidence that it could cause heart attacks for a patient population already at risk for CHD? What was the FDA thinking? How was that risk serving the interest of United States public healthcare? It wasn’t.

After FDA Approval
It is well documented that primary care physicians are overwhelmed by the high number of type 2 diabetes patients that walk through their doors, and how to care for them. When a new drug like Avandia is presented to the market – how does a primary care physician learn about its benefits and its risks? There are many ways a doctor can learn about a new drug:

1. Pharmaceutical representative calling on a doctor’s office and presenting the new drug
2. Continuing Medical Education (CMEs). The AACME is an organization which serves as the body accrediting institutions and organizations offering continuing medical education. They approve the Continuing Medical Education programs that are developed for physicians by these institutions and usually sponsored (funded) by the pharmaceutical industry.
3. Pharmaceutical Advisory Board members who are practicing doctors (often called Key Opinion Leaders) affiliated with the development of the drug, will participate in AACME approved symposia or lectures on a new drug/ its benefits. Often these KOLs will disseminate information about the efficacy of a drug so well that a phone call may be all it takes for one less informed physician to feel comfortable in prescribing a drug he knows little about.

Because Type 2 diabetes is such a complex disease with so many variables (as described before) and because primary care physicians (not endocrinologists or diabetologists) are caring for these patients, professional competencies are tested.
The management of people diagnosed with diabetes increasingly challenges health care personnel in the United States. The number of people with diabetes increases by ~ 1 million yearly,1 and diabetes was the primary diagnosis in 23.8 million visits to office-based physicians in 2006, most commonly to general practitioners, family physicians, and internists.2 Managing diabetes requires practitioners to be competent in complexities of disease management as well as in patient communication, counseling, and education—understanding how multiple psychosocial factors affect patient care and outcomes. Primary care practitioners (PCPs) are therefore required to master both physiological and psychosocial approaches to treatment and management. Yet many are challenged in doing so. Spectrum Diabetes Journal
Isn’t it time for Congress to assess how de-regulated private healthcare (including education of licensed physicians) isn’t serving public health? Avandia has really put this problem into the spotlight – if only Congress (and the media!) would address the core issues. The FDA acts as a lame watchdog, and without a regulatory roadmap – or a sound infrastructure to translate new medical therapies into clinical applications in a systematic way, medical advances and new therapies cannot result into tangible public benefits.. There has got to be a better way. President Obama, are you listening?

22 February 2010

Kris Freeman: Risking Success with Diabetes

Whistler Olympic Park, BC (Feb 20)
On Saturday, Kris Freeman took 45th place in the Men’s 30 kilometer pursuit cross-country ski race. Freeman is the first Olympic endurance athlete with Type 1 diabetes. At the 11.25 km mark of the race, Freeman was just 6.2 seconds behind the lead. On the 4th lap of the race his blood sugar crashed and he “stopped and laid on the ground for a moment." Fortunately a German coach saw Freeman and ran to his side - giving him some Gatorade and some “goo” (glucose gel) and Freeman managed to get up and finish the race.

It’s all about calculated risk for people with insulin dependent or type 1 diabetes. We might have the technology that allows us to calibrate the exact amount of insulin required to do almost anything--swim 500 meters, run a marathon or cross country ski a 30 kilometer race. But it all comes down to trial and error. Sometimes it all goes wrong, and the amount of insulin in our bodies overtakes our ability to move or to think and we just have to stop. It is called a hypoglycemic reaction and it is the most threatening aspect of managing insulin dependent diabetes. Some of the symptoms felt during a hypo include confusion, dizziness, pounding heart, racing pulse, trembling, weakness, anxiety, poor concentration and finally passing out, if you don’t get glucose into your body (to refuel your cells) right away.

It must have been an earth shattering disappointment for Kris Freeman, but I have to hand it to him. He did what many type 1’s do everyday when we have a hypo – although under less extreme circumstances – the best of us get up and we don’t quit. I have had moments too – as a teenager competing in track and field and letting the team down by not being able to complete my sprint because of a hypo; as a young professional having to excuse myself from the podium and the wide-eyed audience because I needed a coke or some candy for my “condition,” and finally as a mother, who has to explain to her young daughter why she must open a can of juice without buying it in the supermarket (Mom, they will arrest you!) or risk passing out in the aisle. I never quit sprinting in high school or enjoying speaking publicly or being honest with my daughter about my diabetes.

I would also never compare myself to Kris Freeman. I am not a world class athlete who has spent most of her life training to compete in elite competitions qualifying for the Olympic Winter Games. But I do have an idea what his body’s stress response was on that fourth lap. Insulin is a dangerous drug, and if you don’t get the simple carbohydrates into your bloodstream during a hypoglycemic reaction immediately, you will pass out. I am certain Freeman felt the hypo coming on – but how could he give up on his chance for an Olympic medal before his body did? He may have pushed his own physical limitations until he had to stop and lie down. That’s what happens – you just can’t go any further – as if the earth falls away from under your feet. I can only imagine the deafening sound of the passing skis rushing by Freeman’s head in the snow because everything is more intense (sounds, colors, feelings) when a hypo occurs. It’s possible that he may have looked around for help and gave up, because vision often becomes tunneled and vague – like the reverse negative of a photograph and that’s when fear steps in… but I am certain he had one thought and one thought only – I NEED GLUCOSE -- in any liquid form, and getting into his body as quickly and easily as possible. As Freeman’s blood sugar began to crawl back up and he brushed the snow off his legs, I wonder if he felt regret and vulnerability, perhaps bad luck and some embarrassment --magnified by the millions of viewers and fans, journalists and coaches who might have been shocked by what happened. But Freeman stood up and finished the race.

Kris Freeman is a hero, not because he is an Olympic athlete. No, I am a fan because he has not given up. A few days before the cross country racing began, he told Matt Lauer and Meredith Vieira on The Today Show, “One of the very first things people told me is what I couldn’t do… that I couldn’t be an Olympic Cross country skier. I worked with my doctors and proved them wrong.”

There will be other races like the Men's 50 km race February 28th, and I’ll be one of his fans right behind him hoping he’ll get a gold, silver or bronze. He deserves it.

“Only those who will risk going too far can possibly find out how far one can go.” TS Eliot

09 February 2010

Eating Abroad with Diabetes - Hong Kong


Check out my piece on a fantastic blog called "A Sweet Life." Here is the link.

08 February 2010

Diabetes and DKA - Bad News for the United Kingdom's NHS (and the BBC)


Today, the BBC reported "a shocking number of children being rushed to hospital each year with potentially fatal complications of diabetes" in an article entitled "Better child-diabetes care urged." The complication at issue here is Diabetic Ketoacidosis or DKA (which develops when you have too little insulin in you blood), and it is affecting more children than any other subset of patients affected by diabetes. There are an estimated 25,000 children with diagnosed type 1 diabetes in the United Kingdom, and the BBC reports that there were 13,465 cases of DKA from April 2008 through 2009. A quarter (3,300) of these cases were children and young people. Why?

What the BBC doesn't tell us is what percentage of the 3,300 were undiagnosed when they were brought into the hospital emergency room. People with type 1 diabetes often recount diagnosis by discussing the blood sugar number which led to its validation. "850" "700" "1012" are some of the blood sugar numbers that have been recalled by patients I know (mine was 960) who might not remember much about their first day of diabetes except for that number which may indicate DKA. The blood sugar level of a newly diagnosed type 1 child or adult can often hover around 1000, far above 250 mg/dl, the level at which DKA can begin. (Normal range is 70-120 mg/dl)

Just what is Diabetic Ketoacidosis? The Mayo Clinic is a useful tool for understanding diabetes and diabetes complications at a very basic level and offers patients a FAQ sheet explaining causes, symptoms and prevention. More weighty definitions can be found from other sources, such as medscape:
DKA is a complex disordered metabolic state characterized by hyperglycemia, acidosis and kentonuria...ketones are acids that build up in the blood and appear in the urine when your body doesn't have enough insulin and are produced when fat cells break down in the blood. When the accumulated ketones exceed the body's capacity to extract them, they overflow into urine (ie, ketinuria). If the situation is not treated promptly, blood serum levels become acidic (ketoacidosis) - this is when shallow breathing usually begins to offset high levels of carbon dioxide in the blood. Other symptoms include thirst, nausea, vomiting, abdominal pain, confusion and shortness of breath. If untreated DKA can lead to coma or cerebral edema. Anywhere from 1-10% of all cases are fatal.
There are a few issues here which the BBC hasn't adequately covered: aside from the the report stating that many families find it hard to access diabetes specialist care, there is no mention of General Physician education and awareness about detection of type 1 diabetes, what the symptoms of diabetes are (although they do describe symptoms of DKA) and where to go for help.

Finally, it is harder to detect DKA in children because children (and teens) are undergoing normal physiological processes (growing), which may frequently require adjustments of clinical management of diabetes. Hormonal and psychological changes during puberty may be critical in conditioning management. Winter colds, flu and other common illnesses may also destabilize control. But essentially, vigilance and routine blood testing and insulin treatment for the diagnosed type 1 child with diabetes can and should help prevent diabetic ketoacidosis.

Diabetes UK, the charity who reported the figures to the BBC, was sited as saying that the rise "could be blamed on children being diagnosed later" (maybe too late is a better way to put it? or because diabetes was undetected?) or perhaps "a failure to manage their condition properly once a diagnosis had been made."

02 February 2010

HAITI: Reprint of JDRF Letter to Diabetes Commmunity

To: The JDRF Family
From: Shannon Allen, International Board of Directors
Adam Singer, International Board of Chancellors
Re: JDRF Program for People with Diabetes in Haiti
Date: February 2, 2010


In the midst of the tragedy in Haiti is an underlying story that touches the hearts of everyone with a tie to diabetes.

From our personal connections to type 1 diabetes - as a parent of a child with type 1 and an adult living with the disease for 30 years - we know that managing diabetes is incredibly difficult in the best of circumstances. We have had a glimpse of how challenging it is given the devastation and chaos in Haiti. One estimate says there are over 300,000 Haitians with some form of diabetes.

Over the past three weeks, several JDRF-funded investigators have selflessly volunteered their time and talents to work in clinics in Haiti or to gather and transport the supplies necessary for diabetes care. Their stories are heartbreaking. As one example, we would refer you to the website created by Dr. Mark Atkinson (http://www.theatkinsonsinhaiti.com/) a JDRF investigator who has, since the 1990s, been leading medical missions to Haiti. Mark just returned last week from nine days in Haiti.

A large number of JDRF voices have weighed in on this issue, and what we hear from them is consistent - the aid that is having the most impact is delivered efficiently through a number of professional, focused, and well-established organizations with long histories in Haiti delivering on such efforts.

Hearing this, JDRF's International Board has discussed the situation at length and determined how we can best respond as an organization and as individuals.

Firstly, we have been in touch with a number of our partners, both corporate and private, and will continue to encourage and support their efforts to provide diabetes supplies directly to the people of Haiti. Across the board, their response has been monumental. We have also been in contact with partners, researchers and medical professionals on the ground in Haiti, and will continue to coordinate with them to see what the Haitian people need.

Secondly, we have developed options for those within the JDRF community who wish to directly contribute to the cause. Ways you can contribute include:

  • The International Diabetes Federation (IDF), a partner of JDRF in programs around the world, has established the Diabetes Trust Fund for Haiti. The money collected will be used to support people with diabetes during the emergency and will help provide services for them in the longer term. You can contribute directly to the fund at http://www.idf.org/idf-diabetes-trust-fund-haiti.
  • The Insulin for Life Foundation is a not-for-profit organization that collects and distributes insulin and other diabetes supplies to needy people throughout the world. Insulin for Life, in conjunction with the IDF, is currently collecting supplies to be sent to Haiti to be distributed through the Haitian Foundation for Diabetes and Cardiovascular Diseases (Fhadimac). Donations of insulin, syringes, alcohol pads and glucose test strips may be mailed to:

Insulin for Life USA
PO Box 2840
Oklahoma City, OK 73101

Please note that it is vital that any donated insulin and test strips must not be past their expiration date, or they will not be accepted. For more information, or to contribute financially to help cover shipping costs, you can go to http://www.insulinforlifeusa.org/.

  • Fhadimac houses the only dedicated diabetes clinic in Haiti, which, amazingly, is still standing and providing services. They are overwhelmed yet are somehow able to give care to the many Haitians with diabetes showing up with no medicine, food, shoes, etc. As of this weekend they received a shipment which allows them to support 200 Haitians with diabetes for a month. We know that we can make a huge improvement for them by spreading the word. To support their efforts, please visit: http://www.fhadimac.org/index-e.php

Finally, we anticipate that in the coming months, hundreds, or even thousands, of Haitians with diabetes may relocate temporarily or permanently to the United States, Canada, and other countries where JDRF has a presence. JDRF leadership will work with our local chapters to welcome and support these people as they arrive in our communities. One of our great strengths is our ability to help those affected by diabetes by the outreach efforts of our chapters.

These steps represent an initial program to provide JDRF volunteers and staff with opportunities to help people in Haiti with diabetes. We will continue to monitor the situation and report on the efforts of our JDRF friends there.

If you have any questions or need more information, please feel free to email JDRF atoutreach@jdrf.org, with Haiti Relief in the subject line.

Thank you for your generosity and willingness to help the Haitian diabetes community at this time of critical need.

26 January 2010

Pain in my Neck (Shoulder, Arm): Is Diabetes to Blame?

Do you suffer from a stiff neck, or frozen shoulder? Is your upper body mobility (reaching for a glass on a top shelf, putting on a jacket, lifting a child up) compromised and causing you to yelp OUCH! Do you also have either Type 1 or Type 2 diabetes? Are you assuming that it could be related? Be careful, because you may be wrongly blaming diabetes as the cause. Conversely, you may be blaming 1. an uncomfortable mattress 2. hunched shoulders/computer screen syndrome 3. the current economic crisis and healthcare debacle, when your aching stiff shoulder IS a diabetes complication. What do we blame, when we don't understand the cause?

I believed that having diabetes for 35 years was the cause of all my neck and shoulder pain. This was recently validated when The New York Times Health section printed a recent snippet about diabetes and its association with frozen shoulder (The Claim: Diabetes Can Lead to 'Frozen Shoulder'). I considered my pain as a sign that the number of random high blood sugars had taken a toll on my joints and frozen shoulder (adhesive capsulitis) was the result. I decided to take action and find out the awful truth. The pain was waking me up in the middle of the night and making me extremely irritable during the day. After a consultation with my endocrinologist, an orthopedic surgeon, two x-rays, one MRI, and finally, a meeting with a well known sports therapist - I am finally better informed. I have been diagnosed with extremely stiff (and weak) muscles. Even though I play tennis (3Xs a week), swim equally as much and rarely drive in Hong Kong (I walk everywhere), I believed I was in good shape. Now I know I have not been properly stretching out before I do any exercise and I am in front of the computer or rather hunched over the computer in a straight-back painted chair (form over function) without taking adequate breaks. Here is what I learned:

Apparently, the muscle that is most at fault is the scalenus, often so stiff and hard it can feel like wood. This is the muscle responsble for most all neck and shoulder pain in the workplace today. Further pain can come from the neck if the scalenus (nifty neck muscle chart here) is pushing a cervical spin nerve such as C4 (which can then give a hollow imprint of pain down the arm). See Neck Pain Support Blog for more information about the cervical nerves and here to read the Top 10 reasons for Neck Pain and How to Correct Them. The impact of one very tight or stiff muscle can then impair and inflame other muscles such as your delphoids, biceps and your rotator cuff. In fact, what I have found after three weeks of physiotherapy is the only pain that now remains is the source - my tight and wood-like scalenus muscle!

What is my prognosis? Recovery is promised if I work at it. I attend physiotherapy twice a week for intense (often pinching or painful massage), and do routine stretching exercises 5 X's a day. I should overcome my shoulder/neck pain if I improve my back posture while sitting in front of the computer screen AND if I continue to stretch. I am also reorganizing my schedule for some yoga. (I'll need to find an ergonomic chair too). If I hadn't taken the time to read, research and consult the number of professionals above - I would still have the idea that the cause for my trouble was diabetes. (It wasn't this time.) For those of you who are experiencing joint (or muscle) pain in the hands, arms, shoulders or neck - and want to know more about the most common disorders associated with Type and Type 2 diabetes - here is a list. A great deal of research is still needed to better understand pathology and treatment.
Frozen shoulder is a condition characterized by shoulder pain and limited range of motion. The bones, ligaments and tendons that make up your shoulder joint are encased in a capsule of connective tissue. Frozen shoulder occurs when this capsule thickens and tightens around the shoulder joint, restricting its movement. In other words scar tissue forms restricting movement and causing pain. However, there may also be a microvascular connection as reduced blood supply to connective tissue may also be the link to this condition and diabetes. MDGuidelines Mayo Clinic Website
Decreased range of motion is key here. According to one physiotherapist I have spoken to - if you have some range of movement - then your condition can't really be classified as "frozen shoulder" - for example, if you can put your arm above your head, below and either pull or push minimal weight downwards, and bend your arm backwards toward your lower spine - you probably don't have this condition.
Diabetic hand syndrome, also called cheiroarthropathy, is a disorder in which the skin on the hands becomes waxy and thickened. Eventually finger movement is limited. This can also cause a symptom called trigger finger where your middle finger is so stiff you may have trouble straightening the joint.
Dupuytren contracture is a deformity in which one or more fingers are bent toward the palm. It's caused by thickening and scarring of connective tissue in the palm of the hand and in the fingers and it is common in people who have a long history of diabetes, perhaps due to the metabolic changes related to diabetes. If you put the palms of your hands together and cannot lay them flat against each other - this is a symptom (likewise, if you can't lay your hand completely flat against a hard surface.)
Not Associated with Diabetes Complications
Carpal Tunnel Syndrome: Carpal tunnel syndrome (CTS) is a condition in which thickened tendons or ligaments in the wrist compress the median nerve that runs from the forearm to the hand. Excessive typing or computer work was in the past suspected by clinicians to have contributed to the risk of CTS. MDGuidelines
Bottom Line
Seek professional help from a multitude of sources and consider a referral for a physiotherapist before considering cortisone injections or any surgery.




19 January 2010

Oh No! Five New Emotions?

It has been well documented that that all human beings share six basic emotions which are characterized by similar facial expressions. We might survey our friends and family to see who knows precisely what the six are and many of us might come very close. In no particular order, they are: joy, sadness, anger, fear, surprise and disgust.
AKA, the Big Six.
What you may not know is there are other more recently documented emotions which epitomize modern existence. (New Scientist, Five Emotions You Never Knew You Had, 13 January 2010) Some of these are written about everyday: rage, jealously, and even depression. But, according to the New Scientist, there are other more obscure - although important - emotions that help how we cope with modern day challenges. Put it this way, while fight or flight has dominated evolution, and today evil reigns in the mountains of western Asia and the front page of our newspapers are a constant reminder of “conquer or be conquered” – there are other emotions that are more reflective of today than what has been identified with our species over the ages.
What I thought I would do is see how these "modern emotions" relate to diabetes and how they are helping us manage a modern illness. Here’s the five that were explored in the list:
Elevation
Listed as number one and therefore, pretty important on the scale, I think. Elevation is heartfelt affection and inspiration similar to what Obama supporters must have felt when they “had tears in their eyes, a tingling sensation on the back of their necks and a warm feeling in their chest.” I can also see how we might be struck by a similar sentiment when we watch our children graduate (or achieve anything formidable and relative to our own mortality.) Why does Elevation exist? Often moments of elevation figure prominently in memory. They humanize us.
The uplifting feeling that chokes you up…hmmm, this is supposed to be rare (only felt at maximum once per week). I would bet that people actively engaged with a chronic illness are in touch with this emotion and utilize it to embrace survival. Perhaps it is the way we might interact with one another in a doctor’s waiting room. I’ll give one example – I was talking to a an older person, disabled by amputation of one leg (T2 diabetes) who grabbed my hand and clutching it firmly, said “We’re all one with diabetes - can't give up - can we?” It definitely choked me up and I have never forgotten his face. He reminds me that I cannot simply "wimp" out.
Curiosity
It used to be that “it killed the cat,” and a curious mind was a dangerous tool. But today, interest (as it is so tamely redefined) is the way we keep calm and serenity in the chaos of our world. If we didn’t have interest guiding our choices/decisions we’d wither in a tsunami of information overload. It helps us learn with agility.
This is great news for all you d-bloggers (and our readers) who are sometimes accused of over intellectualizing or overdramatizing illness. Hey, but it allows us to soothe our anxiety and feel better about our future. The news that JDRF is funding an artificial pancreas or that there may be better technology like OMNIPOD coming at super light speed next year - validates it’s true! Information is power and it’s positive! I feel better already!
Gratitude
Although a facial expression has yet to be identified with this one, it has the most important requirement. It motivates a real action! It forces us to react to kindness and when we do, we give almost mechanically. Not necessarily true, one researcher says… this emotion exists because it allows us to connect and develop relationships with people who “get us.” We know (instinctually) they’re in it with us for the long haul.
For me this speaks to the doctor/patient relationship. It’s going that extra mile and really communicating to your doctor (and vice versa) not as an A1c guidepost or a stringent authoritarian but where there is “a give and take, creating an upward spiral of satisfaction in the relationship." If you don't have this... well, you may want to continue looking for the right doctor. If you can afford to see a doctor or if you have coverage, it is the one aspect of your healthcare you can control.
Pride
For me pride can be a dirty word. Not so! says one researcher at the University of British Columbia (UBC). There are two kinds: "hubristic pride" (agressive/bad) and "authentic pride" (skillful/good). We're concerned with authentic pride which differs from all the other emotions in that it relates more to the language of the body than the face and it is self-conscious. So, what is its purpose? Authentic pride is related to respect and status. It motivates us to work harder.
This is the easiest for me to relate to because diabetes management requires persistent vigilance, but it is also very results driven and we can tell when results are going to be good because we feel great. In fact, that is the reward - controlled blood sugars make us feel so much better. Of course, it helps when our hard work is recognized by our doctors, nurses, friends and family. It is motivational.
Confusion
Ah-ha! Finally something that doesn't have an automatic benefit. (Many psychologists don't believe confusion IS an emotion). But Dacher Keltmer, at UC, Berkley does. It has evolved from the same family as surprise and interest and it's purpose is to let us know "that the way we are thinking about things is not working" that there is something flawed or inadequate. Confusion forces us to change.
This feels like more like problem solving, like we do when we cannot understand why a blood sugar reading is high, even though we bolused before eating and in time! Pure trouble-shooting? But I guess when you think about confusion in a larger context, it does make sense. For diabetes, confusion may come when we've outgrown behavior that never served us well in the first place. "Sometimes it may makes us withdraw" but sometimes it forces us to change.

Do you relate to any of these "new and modern" emotions?

17 January 2010

Haiti: Emergency Diabetes Supplies Needed



What if you survived a major natural disaster, but lost your home, your family? What if the city in which you lived - which happens to be one of the poorest in the world - was one scrambled mess of dead or dying under a rubble of crushed concrete and metal? It is a terrifying scenario. No food, no electricity or fresh water. Street riots, looting and utter chaos everywhere. And emergency healthcare at a time like this? One can only presume there is very little medicine available, including diabetes supplies.

There are more than 300,000 people in Haiti with diabetes (IDF) and it isn't hard to imagine that each and everyone of those affected by the tremendous earthquake, which hit Port-au-Prince on 12 January, need assistance. The quake was the worst the region has felt in more than 200 years, and more than 200,000 people are feared dead.

It's the living that concern humanitarian efforts today and in the weeks ahead. Haiti is the poorest country in the western hemisphere, where government instability, corruption and public unrest has tortured its people for years. And now this. Ban Ki-Moon, the secretary general of the United Nations, is already calling it a humanitarian disaster.

But what is being done to help the living, and more specifically the living who suffer with diabetes?

The International Diabetes Federation (IDF) and Australia-based non-governmental organization Insulin for Life have launched a relief effort for people with diabetes in quake-stricken Haiti.

These two organizations have sent a shipment of insulin, meters, test strips and other supplies to the Haitian Foundation for Diabetes and Cardiovascular Diseases, the only dedicated diabetes clinic in Haiti.
Communicating by email, the foundation's vice-president Philippe Larco said, "We have survived the earthquake which affected almost 3 million Haitians with hundreds of thousands dead." "We are ready to receive diabetes supplies and distribute it in the best possible way to people with diabetes through our network," Mr Larco added.
An additional parcel of diabetes supplies was delivered to the Haiti Diabetes Foundation by project coordinator, Dr. Nancy Larco, who practices as a diabetologist and an internist. She is also a professor of diabetology at the University of Notre Dame.

The International Diabetes Federation is also setting up a Haiti Diabetes Trust Fund where its more than 200 member associations can contribute to building services for people with diabetes in the nation.

For more information or to donate:

Insulin for Life (scroll down to see donate window on left)
IDF Information on Haiti Diabetes Foundation
FHADIMAC
American Red Cross —donate by calling 1-800-REDCROSS, texting “Haiti” to 90999, or donate online.

12 January 2010

Diabetes: A Good Doctor is the Difference Between Living or Not

Dr. Andrew Drexler is one of the most thorough, intelligent, helpful, no-nonsense, (under-recognized), candid, dedicated, (humorous) physicians I have ever met over the course of having diabetes -- that's 35 years!  I still don't think that any of these superlatives do him justice.  Why?   He saved my life.  Twice.  Then he saved another life.  And I know I am in good company as I recently found out that he takes care of Chief Justice Sotomayor too - although he would never dare tell me -- that confidentiality is sacred.

So it was with satisfaction that I read his name in USA Today this morning under the headline, Type 1 Affects Every Aspect of Daily Life, and speaking from his heart about diabetes to the USA Today reporter, Dr. Andrew Drexler says:


"It is always there. You can never get away from it."

Andy Drexler was never one to mince words.

I first met him in 1995 while I was living/working in Manhattan; a friend had introduced me to another Type 1 named Fran Carpentier, and she gave me Andrew Drexler's details.  I owe her thanks too, because at that first appointment I was scared and rather ill.  I was working 15 hour days in NYC and I could just feel the sticky weightiness of a high A1c.  It was over 11.  I was upset and embarrassed - I cried, and he didn't mind a bit.  "Give yourself a break kid -- we'll work on this together - even though it may take a little while"  and sounding just like a modern day Groucho Marx he cocked his head and led me into another room to meet the other most fantastic person in the practice world - Carolyn Robertson - the diabetes specialist for training and managing blood sugars - APRN, MSN, CDE.  You get the idea.  Within months, I was down to a 7 A1c.

Fast forward five years later.  I am working in London and a newlywed.  I have been told in no uncertain terms (and even with a hint of sarcasm) "Do not get pregnant just yet.  We need to get your pump sorted" But I did, and I called the Mount Sinai clinic in 2000 to tell Andy the news.  He wasn't happy, but underscored the high-risk necessity of my finding the right obstetrician and the right hospital.  It wasn't long before I moved back to Manhattan - London just didn't have what I needed.  During my 26th week of pregnancy, and while walking along one of the vast Upper West-side corridors - Columbus Avenue - I collapsed.  I was immediately hospitalized.  Everything (the cardiologists, gastroenterologists, neurologists and any other care) was all orchestrated by Andy.  I stayed in the Mount Sinai Hospital until she was born by emergency c-section, eight weeks later.   Dr. Andrew Drexler had saved my life again x 2.

Today Andrew Drexler and Carolyn Robertson still work together, although the Diabetes Clinic at Mount Sinai (where Andy was Director) closed down a few years back.  No matter, he was soon scooped up by LA and  is now Director of the Gonda Diabetes Center at UCLA.  What a loss for New York. (Mayor Bloomberg - are you reading this?)  Carolyn Robertson still practices in Manhattan (NY) but flies out to LA once a month to spend time with Andy's patients. I believe they care for patients from all over the world- not just the lucky ones in Santa Monica.  I flew over to LA last summer to see them, and will probably go back this spring.

In fact I may just have to move to Los Angeles (I hate the place) but that's just how good he is.

10 January 2010

TYPE 1 Diabetes on the Rise, Still No Reason for Cause

Is there a type 1 pandemic? Scientists are saying that there is evidence of a global increase, and Dan Hurley, who has just published Diabetes Rising, uses this as one of the fundamental rationales for writing his book. Even though there is a pandemic for Type 2 diabetes (and for those of you who haven’t realized this, maybe it’s time you stopped watching the E! Network and tuned into the news), I wonder if a Type 1 pandemic is emerging – has Type 1 diabetes begun to affect a large proportion of the population over a wide geographic area? If scientific data has found this to be the case then who am I to disagree? However, I would also say that the availability of data has increased over the past 30-40 years, and I wonder if this might play a significant part in the increase.


In recent interviews, Mr. Hurley talks about the time in 1975 when he was diagnosed in a small town in Wisconsin (Beloit – population of 35000) where NO ONE had the disease and he had never heard of it. Now three people in his neighborhood have it (Metropolitan area of NYC, I imagine). Surely the scientists are right, Type 1 diabetes is increasing, and it has begun to affect children at an earlier age. However, I would also argue that there has been another fundamental change in our world over the past thirty years! The internet! Communication has fundamentally changed. We have access to private and public, academic, business, and government networks of either a local or global scope and they to us if we allow them! The Internet has created access to linked communities via web sites, blogging, web feeds, instant messaging, internet forums, and social networking sites. Data retrieval has been more than enhanced – don’t you think?  While this cannot explain the 3% increase, I think it does constitute a part of the change in data.

Like Mr. Hurley, I was diagnosed in a similar time (1974), when I was in primary school. The Palm Beach County (Florida) Diabetes clinic where I received my insulin regimen training was teeming with young adults and dozens of the infirmed and elderly—all diabetic. The emergency room nurse who watched over me had a son who had been type 1, but he had died at age 14. (For emotional reasons she was removed from my case.) I immediately caught on that type 1 diabetes was very serious business, but I never considered my diagnosis rare in the most literal sense of the word, although I would have been wrong. (In the US, the Rare Disease Act of 2002 defines rare disease strictly according to prevalence, as "any disease or condition that affects less than 200,000 persons in the United States,"[2] or about 1 in 1,500 people.) Today, it is very unlikely that we will read about type 1 deaths because of advances in technology and newer better insulins. People with type 1 diabetes are living longer, healthier lives, although there are exceptions to the rule - such as the Casey Johnson tragedy.

The truth is I always felt that my Type 1 diabetes was outnumbered by other more serious diseases, and completely over-shadowed by Type 2 diabetes. (Aids in the 70’s and 80’s, Breast Cancer in the 90’s, global Type 2 epidemic in the noughties). In fact, a type 1 pandemic would have been good news! More cases, more attention = more funding! In the late 1970’s I found I was always re-defining diabetes for friends, relatives and acquaintances. I was in the type 1 club, and no one ever really understood the difference between type 1 diabetes and type 2 diabetes. Type 1 diabetes was just not newsworthy, affecting 1% of the population, and it wasn’t fatal, at least most of the time. I don’t think this has changed all that much.

Even so, I am thankful for Dan Hurley’s efforts--although I don’t know if the subject warranted another book. And even though I haven’t read it, I will probably order it as a compendium of all the studies that have been done in the 20th – 21st century. I am thankful for Dan Hurley's work for another reason too --  his subject matter has re-focused my attention (and hopefully the media's) on one staggering fact. It has been nearly 100 years since Banting and Best discovered how to extract pure insulin, and in that course of time, the pathogenesis of type 1 diabetes remains a mystery. Over a billion research dollars haven’t provided any answers. What is the cause of Type 1 diabetes? We still don’t know.

Funny thing is, many of the theories haven’t changed all that much either. The diagram below reflects all the modern theoretical hypotheses:





I remember the doctor telling my parents and me in 1974, that the cause of my diabetes was unknown, but that it was a case of my body turning against itself and wiping out all the insulin producing islets in my pancreas.  He also mentioned that cow's milk could be the culprit, but research was still working on proving different theories. So how much have we learned since then? Not a whole lot, I believe.

There is another body of work that I would encourage everyone to read, entitled, Thirty Years of Investigating the Autoimmune Basis for Type 1 Diabetes / Why Can’t We Prevent or Reverse This Disease? In his lecture, Dr. Mark Atkinson, a pathologist in Florida, argues that we have failed to find the cause of diabetes, because we haven't established the cornerstones:

"The question most often asked of me by individuals with type 1 diabetes or their family members is “when” are we going to prevent or reverse the disease. The second most common question is “why.” Why, despite 30 years of understanding an autoimmune nature of this disease, haven’t we been able to prevent it? As all good puzzle solvers know, a key step involves finding the corner pieces. In our effort to solve the puzzle as quickly as possible, I believe we were unsuccessful in finding the four corners."

Atkinson's four corners are:
1. What is Type 1 Diabetes?  What are the causes? Genetic versus environment?
2. What is the natural history of the disease?  There is no consensus.
3. How do we predict it? We have not found a way to practically, ethically and economically predict diabetes.(This has changed since this article was written in 2005, but just)
4. What have we learned in the lab so far? We have overvalued and overstated the importance of studying mice in relation to man (prevention of diabetes in mice easy vs.
prevention of diabetes in man difficult.

Dr. Atkinson ends his Lilly Award presentation, by stating what he thinks will provide the greatest success, that is to find the "it,"  better define the natural history of type 1 diabetes, use animal models wisely, and to make disease prediction/prevention practical and cost effective."  He also belives in the regenerative capacity of the pancreatic β-cells, and I believe that regeneration research is an area of much focus today.  But is Dr. Atkinson's summary that I feel is the most honest and compelling, perhaps put so directly to all the people who live with Type 1 diabetes:

“technological advances in methods of insulin delivery and glucose monitoring that seemed like pipe dreams just a few years ago are now entering the marketplace. It is time to be optimistic on a number of fronts, at least for those who will likely have rapid access to such treatments. Indeed, we should not forget that much of what I have spoken about today is a mere fable, an unrealistic goal for many in the world with type 1 diabetes—patients who will, given the fate of the geographic location for which they happened to be born, will die for lack of insulin to treat their disease. … the hope they hold would be for free access to the life-saving agent brought to us over 80 years ago (insulin) for which we complain and try to break ourselves free from. For them, and us, I trust we find hope for a “cure” come to fruition.”

07 January 2010

Diabetes and Self-management-Learning to Cope Digitally



After all the reports on the Johnson family tragedy, I started to wonder what kinds of support tools might be available in the future for Type 1's, and I chose to focus on the digital market.  After all, technology has proved to enhance diabetes care over the past twenty years.  There is a caveat however.   I am not looking for 1. new devises for the administration of insulin (pumps, pens) or 2. blood glucose monitors or 3. blood glucose record software programs for ipod or iphone or even my friend, CGMS -- they are all old news for the most part AND, although they are helpful - I am looking for new ways that technology can be utilized for diabetes (emotional) support.

I was immediately struck by what I read to find that most studies focus on adolescence. It makes good business sense. Today it is children and teenagers who are responsible for successful trends in the digital market; they spend a great deal of time on social networking sites or online games, some of their favorite programs are fundamentally (and even globally) educational. My daughter has been competing with children all over the world in maths to see who can come up with the right answer for a problem the most quickly. And that's just the point! Digital education is teaching our children to be better problem solvers (OK, there are other ways of teaching them, but they ENJOY being online). The 8-18 set make up the real digital market these days; they will be the force behind how it evolves over the next fifty years. Who do you think James Cameron made Avatar for anyway?

So, shake the image of the Na'vi out of your mind and refocus back to what I am in search of... What is in development which uses technology to help better self-manage T1 diabetes?

I found a few things out there (let's face it most programs support T2 diabetes and frankly with nearly 7% of the US population struggling with the metabolic disorder - it makes sense); the most impressive is a program called YourWay which is an internet-based self management intervention for adolescents with Type 1 diabetes

The YourWay study ran from July 09 - November 09.  In fact, the findings have just been printed online.

What the study did
A group of 72 adolescents with T1 ages 13-17 were randomized to usual care plus internet support or a usual care group (control group).  The internet support system was designed to enhance problem solving barriers to self-management.  The media program offered the following content:

Interactive multimedia stories depicting (pyschosocial) barriers to self-management, such as peer pressure, time contraints (no time to eat!), and embarrassment - and what approaches for coping and resolving the issues would work best in the opinion of the user.  Other content features included:
Personalized homepage
Social networking/peer forum
Social comparison of their responses to problem solving versus other users
Help from problem-solving experts
Emails encouraging participation and encouragement
Participants HAD NO interactions with clinicians or parents through the YourWay website.

Smart, very smart.

What they found
The adolescents in the internet support treatment group showed significant improvement in self-management.  Although A1Cs remained unchanged for the treatment group (they stayed the same) - the treatment as usual groups' A1Cs actually rose.  Over 60% of the participants gave YourWay an A rating - the rest a B.  A larger more randomized trial is necessary to establish efficacy.

What I think
I like it.  I don't know if YourWay will be the big winner (I have since come to learn that this is a Pfizer program that they are currently using as a new treatment and support plan for patients with an overactive bladder - which sucks the coolness out of the whole business for the teen market) but it may certainly be one of many early prototype designs.  I believe that this is one aspect of the future with diabetes, and I fully support it.  I like it because it utilizes self-determination for change, and requires no additional clinical effort.

Although different in certain design components and methodology,  Juvenation, a social network created by the Juvenile Diabetes Research Foundation (JDRF), is especially for people with Type 1 diabetes, and has already taken the lead in developing this type of social networking site.  It will be interesting to see how successful this program is and what other similar types of networks follow.

06 January 2010

The Casey Johnson Tragedy – Growing up Type 1

There will be a lot of speculation about Casey Johnson and her death, regardless of what the Los Angeles coroner discovers. Celebrity media outlets will focus on the most tawdry or histrionic aspects of her life, with National news coverage following swiftly behind on details of the funeral and what another celebrity loss represents for us in the 21st century. No one will ever know what happened to Casey Johnson in the last minutes of her life and it isn’t that important.

What may be one important factor related to the Casey Johnson tragedy is what it represents to the diabetes community. Most every parent and every child living with Type 1 diabetes struggles with the following questions –

Can (I, he, she) live a full happy life with diabetes?

Can (I, he, she) manage this?

Too Young to Die

What has the public learned so far about this tragedy? Casey Johnson was diagnosed with Type 1 diabetes when she was eight years old and in a family press release we learned that “Casey struggled throughout her life fighting [diabetes].” She was an it girl, and moved from Manhattan’s Upper East side to Los Angeles in search of fame a number of years ago. She had a history of drug abuse, troubled relationships and most recently was arrested for theft. Her family tried to get her into rehab, and when all else failed, they cut her off financially. Her father, Robert Wood Johnson, scion to Johnson & Johnson and owner of the New York Jets, is Chairman of the Juvenile Diabetes Research Foundation (JDRF). The Juvenile Diabetes Research Foundation, an advocacy and fundraising organisation focused solely on Type 1 diabetes (the more scientific term for juvenile diabetes), was founded forty years ago by parents of diabetic children, and has since raised over 1.3 billion dollars for research. We can only assume that Robert Wood Johnson got involved with JDRF at such a high level because of his daughter. We don’t know much about Casey and diabetes except that she and her father wrote and published a book together about managing diabetes (Managing Your Child’s Diabetes”) in 1994. She would have been about 15 years old at that time.

Roll the tape forward to January 4, 2010. Casey Johnson is found dead in a rented house, empty, without heat and full of rats, in Los Angeles, but cause of death is not known. She is 30 years old.

Depression and Mortality in Type 1 Diabetes

It is a well known fact that depression plays a significant role in Type 1 diabetes, and so many thousands of studies have been made to demonstrate how diabetes has a negative impact on the mental health of the patient, that it has become indisputably a given:

people with diabetes have a greater risk of depression than people without diabetes…Just like denial, depression can get you into a vicious cycle. It can block good diabetes self-care. If you are depressed and have no energy, chances are you will find such tasks as regular blood sugar testing too much. If you feel so anxious that you can't think straight, it will be hard to keep up with a good diet. You may not feel like eating at all.

And so on and so on.

Let’s take one step further and look at mortality in young type 1 diabetic patients from two studies, the first completed in 2008.
In developed countries (developed health care systems which provide adequate coverage), the researchers found a significant rate of “excess” mortality in this group, which really means they found nearly 5 x’s as many deaths in this (young Type 1) age group then in non-diabetic <30 year olds. They also found a large proportion of unexplained deaths in bed. In their summary, they found nearly half of all deaths were due to acute (coma) or chronic (heart) complications of diabetes. Drug misuse was also found to be a trend in this particular population (teens, young adults).

Do adolescents with Type 1 diabetes experiment with drugs? It is thought that around ninety percent
of all teenagers have experimented with alcohol or drugs. Why would a child with diabetes be any different? Many health care professionals and even progressive government funded programmes have published information related to adolescent experimentation and diabetes and how to best manage insulin regimens with alcohol or drugs. There are other non- diabetic factors too. The younger you start, the more problems may be indicated later. Teenagers who begin substance abuse at around the age of 14 have a greater chance of developing a serious dependency problem in adulthood
than those who start later in life, say at 17-18 years. Privilege and access plays a supportive role in substance abuse. So do other obvious risk factors (domestic violence, peer pressure, trauma).

Without any details or informed speculation, it would be hard to know how or when any of these issues (depression, drug abuse, alcohol abuse) began in the life of Casey Johnson. All we know is that it started at some point and ended in early death.

Type 1 Diabetes and Adolescence

There is considerable evidence that adolescence with Type 1 diabetes is associated with poorer compliance than childhood with the average age of serious noncompliance beginning around the age of 14-15 years of age. Not surprisingly, factors related to this would seem to run parallel to teenage rebellion and a teenager's need to assert independence. Sarah Caltieri, a young woman who was diagnosed with Type 1 as a child, feels certain she paid a high price for her teenage rebellion which cost her sight. When she hit puberty, she started avoiding her regimented lifestyle and her diabetes, by bingeing, missing meals and injections. She is now legally blind.


There have been many clinical studies and papers published on this subject matter. One study pointed out that adolescents might use diabetes as a vehicle to rebel against people such as parents and doctors who could be perceived as controlling and interfering. Therefore, as notions of identity are carried forward into adulthood, unresolved conflicts impede the process of developing identities separate from chronic illness. Some may even feel that their ONLY identity is diabetes. There is a need for the self to be recognized, separate from diabetes. You can see a similar rebellion in adolescent over acheivers who feeling too much pressure wish to be separated from their status, the star athlete, the child celebrity, the prodigy. (Fosbury, J. (1996). Psychological treatment (CAT) with poorly-controlled diabetic patients.
Practical Diabetes International, 13, 158-162.)

Parenting and Diabetes

Two prominent psychologists identified four core parenting styles proposing that
parenting is either child-centered or parent-centered and that parents either place a great deal of demand or little demand on their children. From these two dichotomies emerge four parenting styles: Authoritarian (parent-centered/high demand), Authoritative (child-centered/high demand), Permissive (child-centered/low demand), and Rejecting (parent-centered/low demand).

Parent centered and or low demand parenting styles tend to result in worst case scenarios, especially when a parent tries to punish for non-adherence or any issues related to diabetes beacause a diabetic child, young person (and even an adult) already feel punished for having diabetes! Attempts to utilize this strategy will result in anger, resentment, rebellion and detachment.

Key issues for parents of children with diabetes include:

1. avoidance of punishment when dealing with diabetes issues
2. arrangement of nontraditional households to better facilitate diabetes management
3. awareness of the potential negative effects of parental overinvestment in helping children with diabetes
4. and the appropriate transference of diabetes management from parents to older children.

Many studies have demonstrated that the most positive parenting behavior correlates with the child-centered, high-demand parents (i.e., authoritative parenting). How does this relate to Casey Johnson? Maybe it doesn't at all. The most positive parenting behavior model for diabetes also correlates with the most positive long-lasting compliance in diabetes self-care, and the most significant promise for coping with a lifetime of diabetes.

05 January 2010

Casey Johnson, Type 1 Heiress, Found Dead





Daughter of Robert Wood Johnson, IV, great, great grandson of the cofounder of the Johnson & Johnson Health Products manufacturer, owner of the New York Jets and Chairman of the Juvenile Diabetes Research Foundation was found dead in her Los Angeles home on the 4th January. Johnson and her father co-wrote "Managing Your Child's Diabetes" (Mastermind) in 1994. Johnson, 30, was diagnosed with Type 1 diabetes at the age of eight. The cause of death is not yet known.

04 January 2010

Biggest Stories of 2009


What were the biggest d-stories of 2009? Here's a list:

d-Politics
Sotomayor Nomination
Her opponents called her a liberal activist, but there were other issues too. After a few missteps from the media and some callous investigations from the Justice Department and the Senate over her ability to perform with Type 1 diabetes, everyone sighed with relief when the 111th U.S Supreme Court Justice was sworn in on August 8, 2009. Sotomayor's accomplishments have nothing to do with her Type 1 Diabetes say some d-advocates, but those of us who have suffered with the disease since childhood know better! Her professional achievements are not dimished in acknowledging 40+ years of living with diabetes.

d-Health
Treatment Guidelines
The ADA, and a handful of other medical watchdog organizations published treatment guidelines that recommended aggressive blood sugar control for ALL types of diabetes. Although there were some who were against the position statement, the ADA in particular believed that doctors would still have plenty of discretion about how to treat their patients, with one director stating rather pointedly, {we} can no longer sit silently thinking that our discipline is unified toward improving diabetes care,” so the medical advocacy groups and quality assurance folks went ahead. That was in 2006. This year, the New England Journal of Medicine, found in the NICE-SUGAR study, that for every 38 patients in ICU aggressively treated for high blood sugar, one would die. Another published study found similar results for patients with diabetes and heart disease. The orginal position statement for AGGRESSIVE blood sugar control for all was retracted. The upshot? Much confusion for patients everywhere. Look at the logic and believe it, unless you have a very serious heart condition or are in the ICU, agressive blood sugar control is key.

Swine Flu and diabetes
The children, the aged, the chronically ill. We were all told to get THE shot. Well when it became officially flu season, and as soon as the H1N1 vaccine became available which it did in November. The Centers for Disease Control and Prevention and the NHS and other state National Healthcare Systems (and where I live -- Hong Kong) recommended people with diabetes get vaccinated. Did you?

d-entertainment
The good! The year of the d-Advocate
2009 may have been the best year yet for d celebrities taking a stand and speaking out. Nick Jonas spoke before the Senate Committee on Homeland Security and Governmental Affairs to appeal for the renewal of federal funding for diabetes research. A gaggle of swooning girls waited on the steps of Capitol Hill for Jonas which bought more attention to the issue than ever before!
Lance Armstrong switched gears and is now supporting diabetes through his website and other platforms stating, "Much like with cancer survivors or those who have HIV, people with diabetes have been dealt this hand, a health challenge."
He has a special section on his website for people with diabetes called "Myplate D."
Chicago Bears quarterback, Jay Cutler was diagnosed at the age of 25 in 2008 and has been working with Eli Lilly in speaking candidly about the disease and his career. (His video stream is here.) For every touchdown Cutler makes this year, he will donate a scholarship for a child to attend a diabetes camp this summer. Thanks Jay!

The Bad, the Ugly
One Wisconsin couple was charged with reckless homicide after they chose to pray for their 11-year-old daughter's recovery from diabetes rather than take her to the hospital.
Time magazine's coverage of diabetes appeared to utilize wiki as a source for defining diabetes "Sotomayor's Diabetes: Will It Be a Handicap?"
Brittany Murphy's untimely death and media speculation that the cause of death was T2 diabetes. An autopsy will soon determine the cause....

d-LAND
The International Diabetes Federation (IDF) released the fourth edition of the IDF Diabetes Atlas at the 20th World Diabetes Congress in October 2009 in Montreal. Currently, population stats for diabetes worldwide is now forecasted to be 285 million this year. If d-Land was a country it would now be NUMBER 4 behind China, India and the USA.

Next up - 2009 Industry and Research News.

28 July 2009

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

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

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

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

Here is what the Archives of Internal Medicine reported yesterday:

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

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

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

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

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

Pump $6000 (one time cost) under warrenty for 4 years
GGMS 650 (one time cost) lasts for one year

Blood Glucose Monitor 100 (good for 2 years)

Sensors for CGMS $1050 for 10 (350x 3 for 3 month supply)
Insulin (rapid) 400
Infusion sets for pumps $400
reservoirs 150

glucose test strips 450
Lancets 20
alcohol pads 15
batteries 20

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

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

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

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

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

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

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


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

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

28 June 2009

TEAM TYPE 1 WINS RACE ACROSS AMERICA



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

22 June 2009

GO TYPE I Diabetes Team!

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

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

30 May 2009

BBC Reports: Child Diabetes Cases to Double

Yesterday the BBC reported:
The number of under-fives in Europe with type 1 diabetes is set to double between 2005 and 2020, say experts.
The BBC report is here. The original source for the BBC was The Lancet who published an early online edition (yesterday) of a multicentre prospective registration study on the increase in childhood (Type 1) diabetes.   In their summary statement the lancet reports:

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

The study made the following interpretation:

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

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

27 May 2009

Defining Diabetes (with Sotomayor)


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

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

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

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

To dispense with any health concerns about Judge Sotomayor, officials said the White House contacted her doctor and independent experts to determine whether diabetes, which she learned she had at 8 years old, might be problematic and concluded it would not. The Obama team also interviewed colleagues on the Second Circuit to check out reports that she was difficult to get along with, and was reassured it was not true.
Diabetes may be the least interesting aspect of this formidable woman.  She was born to Puerto Rican Working Class immigrants who settled in the East Bronx, she attended Princeton and was by all accounts, socially isolated by her peers, but pulled through and went on to Yale Law in the early 1970's.  She wrote her way onto the Law Review with her deep analysis and social concern for the poor, especially Puerto Ricans and American minorities.  Professionally she is an "imposing prosecutor" and a "legal dynamo" who has several notable cases under her belt addressing civil and religious liberties.  Read the times article for more....

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

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

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

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

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

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

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