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HomemistoryDiabetic Eye Disease: The Forgotton Middle Child

Diabetic Eye Disease: The Forgotton Middle Child

A relatively small investment of funds to establish a national diabetic screening program must be a priority – or Australia will face a healthcare crisis of epic proportions, experts have warned.And they say intense lobbying efforts must be made to ensure the impact of diabetes on eye health isn’t relegated to the background.

The image of a red ribbon is synonymous with HIV-AIDS; the pink ribbon is breast cancer and a red nose belongs to SIDS. These devastating medical conditions have (quite rightly) gained a high level of public awareness.

According to authors of a major report, it is a level of prominence and awareness that needs to be achieved if we’re to counter another looming health crisis for Australia: Diabetes and diabetic eye disease.

“The eyes are like an orphan organ, if you like. They’re the middle child, who doesn’t get the attention until they make a noise; until they have a tantrum and demand attention.

We know from Medicare data that 50 per cent of people with diabetes aren’t getting regular eye checks… It’s appalling

“People fear blindness second only to cancer, yet they (the eyes) are neglected. We need to lobby. We need to have diabetes and eye disease on the tip of every tongue.”

It is a passionate plea from Dr. Mohamed (Mo) Dirani, Principal Investigator, Evaluative Research and Health Services, within the Centre for Eye Research Australia (CERA).

Dr. Dirani is one of the authors of a major report Out of Sight – a report into diabetic eye disease in Australia, released late last year, which warns that almost all people with type 1 diabetes, and more than 60 per cent of those with type 2 diabetes will develop some form of diabetic eye damage. Many will go on to experience vision loss – even blindness – as a result.

The report, the work of two of Australia’s leading research institutes – CERA and the Baker IDI Heart and Diabetes Institute – describes diabetes as a “looming health crisis” and the figures projected by the report are certainly alarming:

  • Diabetic eye disease is a leading cause of irreversible blindness in Australian adults
  • It is estimated that for every person diagnosed with diabetes, there is another who is living with the disease but is undiagnosed
  • By 2025, an estimated two million Australians will have diabetes
  • By 2033, the total annual cost of diabetes to the Australian economy is expected to rocket to well in excess of AU$20 billion.

Type 1 and 2

Diabetes is associated with a number of serious complications, some of the more common include:

  • Heart disease and stroke
  • Reduced kidney function and kidney failure
  • Blood vessel disease affecting the limbs that may lead to limb amputation
  • Nerve damage, typically involving the feet
  • Diabetic eye disease characterised by damage to the small blood vessels that supply the retina

There are two types of diabetes. Type 1 diabetes primarily affects children and young adults (although it can start at any age). People with this form of the disease require treatment with insulin for life.

Type 2 diabetes is far more common, affecting nine out of every 10 people with diabetes. Type 2 diabetes typically appears later in life, as a result of bad diet and lifestyle choices, with an added genetic risk for some. It is a worldwide problem, largely driven by sedentary lifestyles and unhealthy eating. In 2013, the International Diabetes Federation’s (IDF) Diabetes Atlas estimated there were 382 million people in the world who had diabetes.1 The number is expected to increase to 552 million by 2030. The IDF estimates that one person dies from the disease every six seconds.

For some population groups, including Australia’s Indigenous communities, type 2 diabetes is a serious risk, regardless of lifestyle.

Personal and Public Costs

Dr. Dirani said the personal implications of diabetic eye disease were “devastating”, indicating there was a strong link between blindness and anxiety, depression and anger.

But, the public costs are also staggering. At the recent World Diabetes Congress held in Melbourne, Novartis released the results of a new study analysing the economic impact of blindness as well as four major eyesight conditions, on society and the healthcare system in Australia.

The study, conducted by the independent health economics group, Deloitte Access Economics, showed that blindness in Australia is estimated to result in annual economic costs of over AU$337 million – or $13,974 for each blind person. More than 70 per cent of these costs result from the informal, day-to-day care for blind people by relatives and friends.2

Commenting on the release of the study, Sir Michael Hirst, President, International Diabetes Federation (IDF) said “very simple measures, which already exist, such as screening for diabetic retinopathy can greatly reduce the economic burden of this eye disease.”


Dr. Dirani said despite the known risks of diabetes, ongoing public health messages are still required nationwide, and that is especially true when considering the impact of diabetes on the eyes.

His fears of complacency are backed by a global survey, conducted by Novartis Pharmaceuticals in collaboration with medical experts from the UK and Germany, that looked at patient behaviour after diagnosis with diabetes.

The survey – titled Time 2 Do More in Diabetes3 and also made public at the Melbourne World Diabetes Congress– questioned 337 physicians and 652 people with type 2 diabetes about reaching blood sugar goals.

“Following diagnosis, two-thirds of patients (63 per cent) say they understand the importance of blood sugar goals… yet physicians only expect half (52 per cent) of patients to reach blood sugar goals,” the survey found. After diagnosis, only two in five patients do more exercise to reach blood sugar goals, and only half (51 per cent) make any dietary changes.

Fundus photographs of a normal eye (left) and an eye showing the presence of non-proliferative diabetic retinopathy and clinically significant macular oedema (right). Photos courtesy of CERA

The Novartis survey found that more than nine out of 10 (92 per cent) of physicians discussed the risks and complications of diabetes at diagnosis – yet only half of patients recall the topic being discussed and only three per cent of patients fully understand the risks of hypoglycaemia.

Despite the fact that half of people with diabetes die of cardiovascular disease (heart disease and stroke), only 21 per cent rate heart disease as a “top concern”.

Interestingly, half of all the patients responding to the survey said their “biggest fear” was developing vision problems.3

Curiously, it seems that fear is not prompting people to action – at least not in Australia.

“We know from Medicare data that up to 50 per cent of people with diabetes fail to get regular eye checks,” Dr. Dirani laments. “It’s appalling.”

“We have the expertise at hand. I’m sitting in one of the top five eye research institutes in the world. Australia is a first world country. “Only with a collaborative effort between researchers, health professionals and patients will we see a significant drop in the number of Australians unnecessarily going blind. I am optimistic that such a move will be supported by all.”

So, if vision loss seriously frightens diabetic patients, but – as Dr. Dirani points out – they are still not getting their eyes tested regularly, what is the a missing piece of
the puzzle?

UK Screening

“It is an interesting question,” Dr. Dirani said. “It must be a multi-disciplined approach.”

“We all need to work together and there must be transparency and communication” between health professionals, including general practitioners, optometrists and ophthalmologists, Dr. Dirani said.

Included in the national framework should be specially tailored programs for higher risk populations, such as Indigenous peoples. Also, accessibility to low resource settings must also be a priority, he said.

Dr. Dirani points to the UK system, saying Australia is “about 15-20 years” behind the UK as a result of the introduction of a systematic national screening program there.

In England, the National Health Service Diabetic Eye Screening Programme (NDESP), which tests the eyes of all adults with diabetes and all children over the age of 12, aims to reduce the risk of sight loss from diabetic retinopathy by early detection and treatment, if required.

According to the NDESP website, the NDESP is centrally coordinated, and “more than 80 local programmes deliver screening across England… in line with national quality standards and protocols… Each local programme co-ordinates screening for its population and organises invitation letters, screening clinics, result letters and referrals to hospital eye services”.4

GPs are routinely informed of their patients’ screening results. While people can refuse screening, opting out for a non-medical reason requires them to sign a form, indicating they have a clear understanding of the risk of diabetic retinopathy.

Dr. Dirani said after the introduction of the NDESP in the UK, diabetic retinopathy dropped from the second
most common cause of blindness in adults to the fifth most common. He said the number of surgical interventions also dropped dramatically.

“There’s no reason why we should not be following the footsteps of the UK model, and of course modify the model to accommodate for our local health system” Dr. Dirani said.

Looking Down the Pipeline

He said the key points of any national diabetic eye screening program must be, thorough diabetic eye screening, early intervention and timely treatment, and education about the progressive nature
of the diabetic eye disease.

Once a patient is identified as having diabetes, it is important that they’re alerted to “all the issues” associated with a complex disease and are encouraged to “look down the pipeline”.

“Diabetes management goes way beyond blood sugars. We need to drill in the importance of physical activity and diet. Way less than half the population engage in the recommended one and a half hours of physical activity (a week),” Dr. Dirani said.

“People must not think they can wait until their vision is blurred. By that stage, they’re probably in the moderate to severe stages (of diabetic retinopathy). There are a whole heap of pathological changes that occur before you notice. Unfortunately diabetic eye disease is a chronic medical conditions that typically presents with no symptoms in its early stages.

“Diabetic patients must be diligent. There are always cases that will progress no matter what, but even if you are genetically disposed to developing diabetic eye disease, you can modify and even stop its progression.

“Diabetes is not a single gene disease, so to some extent, the control is still in our hands.”

Making Noise

So for Dr. Dirani and his colleagues at CERA and the Baker IDI Heart and Diabetes Institute, it is a no-brainer: Australia must introduce a national diabetic eye screening program, accessible to all Australians with diabetes, as a matter of urgency.

“It is not an issue of where the money is sourced from… With a relatively moderate investment, we can reduce the future cost to the economy from diabetes by many millions of dollars.”

The authors of the Out of Sight report have already begun lobbying efforts in Canberra.

Having presented the report to Australia’s parliamentarians, Dr. Dirani said the response was “welcoming” but there were no firm commitments to a national screening scheme.

“We need every member (of parliament) to have diabetes and diabetic eye disease on the tip of their tongue,” he said.

“We have to keep making noise,” he said.

“Every day we delay, there’s the likelihood of someone else going blind.”

The Out of Sight report is available on the CERA website http://www.cera.org.au/uploads//pdf/OutOfSightReport.pdf<http://www.cera.org.au/uploads/pdf/OutOfSightReport.pdf

Symptoms of Type 2 Diabetes

One of the problems with type 2 diabetes is that many people have no symptoms at all, however there are some warning signs:

  • Being excessively thirsty
  • Passing more urine
  • Feeling tired and lethargic
  • Always feeling hungry
  • Having cuts that heal slowly
  • Itching, skin infections
  • Blurred vision
  • Gradually putting on weight
  • Mood swings
  • Headaches
  • Feeling dizzy
  • Leg cramps

Diabetes Australia estimates that up to 60 per cent of cases of type 2 diabetes can be prevented by:

  • Maintaining a healthy weight
  • Regular physical activity
  • Making healthy food choices
  • Managing blood pressure
  • Managing cholesterol levels
  • Not smoking

There are, however, some risk factors that cannot be changed. According to Diabetes Australia, you are at a higher risk of getting diabetes if you:

  • have a family history of diabetes
  • are older (over 55 years of age)
  • are over 45 years of age and are overweight
  • are over 45 years of age and have high blood pressure
  • are over 35 years of age and are from an Aboriginal or Torres Strait Islander background
  • are over 35 years of age and are from Pacific Island, Indian subcontinent or Chinese cultural background
  • are a woman who has given birth to a child over 4.5 kg, or had gestational diabetes when pregnant, or
  • had Polycystic Ovarian Syndrome.

Diabetes Australia website: www.diabetesaustralia.com.au (accessed January 2014)

If Only…

Tania’s story – included as a case study in the Out of Sight report – is a study in regret and guilt.

Diagnosed with type 1 diabetes at the age of 11, she struggled to manage her condition as a teenager and young adult. By 23, Tania was experiencing blurred vision and eye tests confirmed the presence of diabetic retinopathy.

Despite intensive treatment, her retinopathy was advanced and her sight could not be saved. Within two years of diagnosis, she was legally blind in both eyes.

Tania admits to guilt about her situation: Despite recommendations to have an eye exam, she had not followed through.

“Being blind put a lot of strain on my relationship with my partner, and with my mother and sister. I had to make a choice of either living my life listening to TV or have a purpose.”

Tania is now a passionate advocate of early diabetic eye screening and hopes her story will encourage others to act earlier


1. International Diabetes Federation, IDF Diabetes Atlas sixth edition, 2013, quoted in Novartis Pharmaceuticals Time2DoMore in Diabetes Infographic, 26 Nov 2013.

2. Novartis Pharmaceuticals, The Cost of Preventable Blindness: A health economic study analysing the impact and burden of blindness and eye disease in Australia, Infographic, 3 Dec 2013.

3. Novartis Pharmaceuticals Time2DoMore in Diabetes Infographic, 26 Nov 2013.

4. http://diabeticeye.screening.nhs.uk (accessed Jan 2014).