Diabetes Greatest Contributor to Rise in the Blind

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

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

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

What's Diabetes Like When...

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

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

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

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

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

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

More next time.

What Comes First? Diabetes or Socio-economic Class?

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

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

and

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

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

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

Study to Identify Cause of Type 1 Diabetes

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








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

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

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

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



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



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

Are you a High Functioning Diabetic?

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

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

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

Which leads me to two questions.

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

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



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

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

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

Faces of Insulin Pumping # 2

(Please see new comments posted below artcle - 09/02/06)

I met Hannah Lawrence at an Insulin Pumpers - UK meeting last month at a London wine bar. Hannah's Mum was there with her, and you could tell straight away that they were a wonderful mother/daughter team -- elbowing each other one minute and watching each other with a respectful eye the next. Hannah was diagnosed just before she turned 2 years of age. (25 years ago!) Hannah's Mum was telling me many anecdotes about how hard it was to take care of her (then) baby as the nurses made her wring out Hannah's diapers to check her level of sugar. Obviously this was before home blood testing. Recently, I asked Hannah if she would agree to write about her new pump experience as she has been on it now for 3-4 weeks. Like so many people with diabetes she has that exquisite air of self-knowledge and courage. Here is her story:

I had mixed reactions when I told people I was getting an insulin pump - some looked at me in horror as if being connected 24/7 to a machine was a life-sentence. Others were very interested and thought it was a good idea. But it is a personal choice, and only I knew what it would mean to me. If I had to use a few words to describe how it makes me feel, I would say - freedom, control,

I have been diabetic since I was 18 months old, and I am now 27. My control started to deteriorate once I controlled my own eating from my teens. Up to the point of starting my pump this year, I was on approximately 8 injections a day, with an Hba1c of 9.5, and common blood sugars of 17+.

I cannot put into words how it feels not to have to inject, and to have an “external pancreas” as a colleague called it yesterday. I no longer have to stay up to a particular time at night in order to have my background insulin, I no longer have to set myself reminders to take my morning background insulin, I no longer have to get an injection out in public, or hide in the toilets to inject, I no longer have to eat extra calories if I am hypo apart from the initial hypo treatment. I haven’t tried exercise yet (naughty me!) but I look forward to being able to change my basal to deal with exercise rather than having to eat.

I have ignored my diabetes for far too long, but have finally come to the realisation that I need to look after myself and get better control, and I have been given a fantastic tool to achieve this goal. I still have to work out the correct basals but my control is already vastly improved, and I now feel very ill with blood sugars up at 17, whereas before this was normal.

Some diabetics are happy to have two injections a day and to eat specific amounts at specific times. If this is you and you are happy, then stick with it. If you are like me and you like to vary your food enormously, eat when it suits, not eat when it doesn’t suit, and eat more than 3 meals a day, I would highly recommend trying to get a pump. Quality of life is vastly increased after only a few weeks, and no-one is taking this gadget away from me now!!!

Thank you Hannah!

Diabetes ID: To Wear or Not to Wear?

The question isn’t should you wear or not; the question is do you choose to?

A special bracelet was made especially for me as a gift; only the charm has the medic alert insignia on it with diabetic written on the underside. It is so tiny, I have often wondered if a paramedic would even notice it given an emergency.

Decidedly, it is the minimum i.d. I could possibly wear. I also carry the diabetic identity cards in my wallet, which I believe could be very useful, unless I am found unconscious without my wallet -- a very likely scenario!

As I began a new job today, and as I rushed to take my daughter to school and make it into Kensington on-time, it occured to me -- why am I playing with fire? It is such a simple, practical issue. Why have I neglected this one fine, but critical point?

Am I too confident?

Hmmm…I think it is time that I considered the implications of not wearing an authentic diabetes ientification.

Here is a list of resources for those who are in a similiar state to me! I have heard Lauren's Hope has great things (I would always choose items with a higher visiblity quotient at this point) and is reliable.

Diabetes UK Link Page

Children With Diabetes has many good links on where to buy

Lauren's Hope

Feel free to add to my list with your suggestions.

Reader Comment from Nigeria

Because comments from old posts aren't often read, I decided to publish this comment that came in response to my Diabetes In Africa post. I was so elated that someone in Africa looked at the article, that I thought it was worthy to share and to show the power of blogging. Here it is:

I read with interest the article about diabetes in Africa. I'm mother of a 4 yr. son with Type 1 diabetes. We currently live in Lagos, Nigeria. We moved to Nigeria less than one year after my son's initial diagnosis. Our pediatric endocrinologist at the time thought we were nuts and did not want to assist us with long distance care for legal reasons. He tried to help us find an endocrinologist in Nigeria, but was not successful. At this point, I knew I had to educate myself in all aspects of diabetes management. Three years later, we still haven't been able to find a local endocrinologist. Therefore, I have to travel back to the US 2x per year for testing and supplies. They are unable to do HbA1c testing here. Thankfully, he hasn't had to be hospitalized for DKA or anything else.

It is true what was said about awareness and medical supplies for diabetes. I go into pharmacies and ask about their diabetic supplies. There aren't many products on the shelves. Many don't stock syringes. The supplies are also expensive. I promptly inform them of the different supplies that diabetics need.

It's really sad. I know there are thousands of people in Nigeria who have this disease, but lack of awareness prevents diagnosis and treatment.

I hope the work this gentleman (from the International Insulin Foundation)is doing will expand to other countries on the continent. If you come to Nigeria, I'd be willing to help.

Sincerely,

Marionette Audifferen
audiff@yahoo.com

The Challenge of Diabetes in Africa

Waiting in Line at the Diabetes Clinic (Dar es Salaam)

Today, I am introducing David Beran, Project Coordinator for the International Insulin Foundation. David Beran has been the Project Coordinator of the International Insulin Foundation since its establishment in 2002. He is a Swiss national who grew up in Geneva and holds a BSc in Management with an Emphasis in Marketing. He has worked for a leading Swiss Biotech Company in both Health Policy and Government Relations and in Public Relations. For his Masters’ dissertation at the London School of Hygiene and Tropical Medicine, David worked at the WHO looking at designing a model for preventing Type 2 diabetes in children.

I wrote to David a few weeks ago and asked him to write a piece on Africa and how people cope with diabetes there.

What Is the International Insulin Foundation?

In 1901 Dr. A. Cook, a medical Missionary wrote in his notes on diseases met in Africa “… diabetes is very uncommon but very fatal…” Over 100 years later I was hired by the newly established International Insulin Foundation (IIF) to accomplish its mission of “increasing access to insulin and diabetes care in the World’s poorest countries.” The IIF was established by Professor John S. Yudkin following an article he wrote in the Lancet in the year 2000 and is a registered Charity in the UK (www.access2insulin.org).

My first challenge, besides learning more about diabetes, was to find a way to develop a protocol that assessed the different levels of a given country’s health system. In essence the protocol studied two parallel paths:
- The path of insulin from its arrival in a given country until it reached/or failed to reach a given patient
- The path of care from its organisation at the Ministry of Health to when patients attended different facilities around the country.


A Rural Pharmacy

This protocol has now been implemented in Mali, Mozambique and Zambia and the IIF has worked closely with the Ministries of Health, Diabetes Associations and local NGOs in these respective countries to improve the situation for people with diabetes.

Living with Diabetes in Developing Countries

From the moment I set foot on the African Continent what struck me was its people. After 3 years of working for the IIF and having spent 3-4 months in Mali, Mozambique and Zambia and visits to Tanzania I have had some amazing encounters, with unique people.

I have met dedicated doctors and nurses who spend many hours caring for their patients. One such nurse I met is now referred to as Mommy Diabetes. She cares for children at a special clinic, runs a camp for them and ensures that parents understand what diabetes is and especially that even though their child has diabetes it doesn’t mean they can’t live a normal life.


Diabetes Camp

Another one of my encounters was with a 32-year-old journalist who had been diagnosed with diabetes 12 years earlier. He provided me amazing insight into what having diabetes in Africa was like. He was the first person with diabetes I got to know well and he made me realise that each patient had a story to tell. Before his diagnosis he had never heard of diabetes, and he thought he had malaria until the doctor he went to see checked his blood glucose. When we spoke about his condition he said he was lucky as well as he could read about diabetes on the Internet and in books, as he was literate and spoke English. The last time he went to see a doctor was 5 years ago as he put it, “I am fine. I don’t need to wait over an hour to see a doctor.” One evening we went out with some of his colleagues and they asked how we had met. I told them about my work and they were surprised to find out that their colleague had diabetes. They had no idea and asked him 100’s of questions about his condition.

Access to Healthcare – Access to Insulin

Accessing insulin and syringes was sometimes a problem for people with diabetes in sub-Saharan Africa. Insulin is not always available, for some its cost is a barrier and others have to travel far to be able to get it. Syringes are often not available in the public sector and people use their single use syringes more than once or until injections starts to hurt because of a blunt needle. Most people I met had no means of self-monitoring their blood glucose.


Insulin Sitting in Warehouse

A young boy in a rural area had an amazing story to tell about his diagnosis. He was admitted to the hospital with suspicion of cerebral malaria. The first reflex healthcare workers have when they suspect cerebral malaria is to put the person on a glucose drip. This young boy told me how after the nurse had put the drip in he felt worse. No one did anything about it, so he tore out the drip and went crazy. A doctor then came in and asked what the problem was. When the boy described how he felt, the doctor tested his urine and found he had diabetes. Unfortunately, this boy is from a very poor family who is unable to afford his insulin and care. He receives support from a local diabetes association and one of the older members makes sure that he gets his insulin and talks to his family about the importance of caring for him.


3 patients in Sikasso, Mali (Boy in white is the one discussed above)

Due to a lack of diagnostics and trained healthcare workers this scenario is all too frequent. Healthcare workers often told me, “We know what we see.” They see many patients with malaria and too few with Type 1 diabetes. They have received basic training in diabetes diagnosis and care, but lack of familiarity with the condition means that this training is often forgotten. This leads to many patients not being diagnosed, especially children.


Young Girl in Hospital with ketoacidosis

Another experience that brings a smile to my face is when I attended the first camp organised for children with diabetes and the children were asked to make their requests to the diabetes association and government. They asked not to be forgotten and also that they wanted to create their own children’s association. The girl who delivered the speech was about 10 years old, but already a very convincing patient advocate. It was amazing to see these children learning about their diabetes and how to test their blood glucose. At the end of the camp they went swimming and became children again and not diabetics.


6 year old boy with glucometer


Inadequate Healthcare – and its Cost

The problem in the countries where I have worked is that diabetes is an expensive disease. Even though some aspects of care may be subsidised or free, there is still a cost to diabetes care, whether it is testing, insulin, transport or consultation fees. In Mali for example a patient in the capital city will spend approximately US$21.24 per month for diabetes care (US$255 per year). Half of this, about US$11, would be for one vial of 100 IU insulin. This in a country where the GDP per capita is about US$900.


Traditional Healer (often the first contact people have with "medicine")

The IIF believes that to tackle this problem the health system, as a whole needs to be improved. Donations of insulin and other punctual projects are beneficial in the short-run, but the IIF aims to find sustainable solutions to the problem of diabetes care and insulin access. This means working closely with local partners and improving local capacity based on a sound initial assessment with a clear set of recommendations that have been prioritised by local stakeholders.
I have only told a few stories about the patients I have met and interviewed for my work. For this work close to 100 patients have been interviewed and with many others I have had fascinating discussions. Each patient has told me a story, their story and the story of their diabetes. Some have made me laugh to tears and some have brought tears to my eyes.

Based on the IIF’s work, we have estimated that the life expectancy of a child in rural areas of sub-Saharan Africa can be as low as 7 months. Stories about people with diabetes and their suffering abound. However, I have decided to share the uplifting stories to highlight that diabetes in sub-Saharan Africa can be treated and people with diabetes can live normal lives even in the world’s poorest countries.

For those of you who would like to make a comment to David Beran and the IIF, feel free to leave it here or contact the organization directly by going to their website at www.access2insulin.org