Dana Wortley (SA, Australian Labor Party) Share this | Link to this | Hansard source

I rise tonight to speak on the issue of type 1 diabetes. As a member of the Parliamentary Diabetes Support Group, I met recently in Adelaide and again here in Parliament House with representatives of the Juvenile Diabetes Research Foundation who brought me up to date on research developments and the latest statistics on this increasingly common disease. I also had the opportunity to join with my state colleagues in a bipartisan event, Kids in the House, where young children and teenagers had the opportunity to sit in the House of Assembly chamber along with their parents and tell members of parliament of their life, living with juvenile diabetes.

I have learned from speaking to the parents of these children that, as a parent of a child with type 1 diabetes, there is no beginning or end to the day. Life is a constant, relentless, stressful, sleepless, unforgiving cycle of monitoring and management, watching and worrying. Easing up on this strict energy- and emotion-sapping regimen can prove fatal. If a child’s blood sugar levels dip too low, he or she may lapse into a coma. If this happens during the night, they simply may not wake up.

Parents must administer up to six insulin injections a day and check their child’s blood sugar levels with a finger prick up to eight or more times every day. It is not uncommon for a parent to have to check their children at 7 am, lunchtime, 4.30 pm, pre-bed, midnight, 1.30 am, 3 am and times in between. It never ever stops; there is no respite and no rest. This is the message that I was given. Monitoring a child’s blood sugar levels and watching for signs that their health is deteriorating is never ending, and there often is no choice but for a parent to become a full-time carer even as children grow to ages at which they would normally have more and more independence. For example, during a birthday party, a child with type 1 diabetes is likely to need three finger pricks.

One of the parents I met at the Kids in the House event was Lorraine, mother of five-year-old Thomas who is a type 1 diabetic. She told us that a simple sleepover at grandparents’ or friends’ homes just is not an option for most children and families living under the diabetes cloud. It is a devastating disease that does not discriminate; it cannot be controlled by diet or lifestyle. Lorraine and other parents I met with on that day wanted this point highlighted: it cannot be controlled by diet or lifestyle. The hope for these children, whose futures otherwise promise a shortened life span and may include severe health complications such as organ failure and amputation, is to find a cure.

Lorraine, who gave up a position as a corporate account manager for a telecommunications company to become a full-time carer to Thomas, says that a lack of public awareness of the disease is a big issue. While she and her husband, Douglas, were familiar with type 1 diabetes because his twin brother was diagnosed at age 21, she knows it is a mystery to much of the community, including those who are newly diagnosed. Lorraine chairs a family forum, a parent family voice, which meets monthly. Established to keep families of children with juvenile diabetes informed, it provides information on daily living experiences within kindergartens and schools and acts as a support network for parents and children.

It is often the case that children with diabetes look well and so the complexity and severity of the disease and the impact it has on families living with it may not be obvious. Lorraine said: ‘I can’t even begin to describe to you the worry that we, as parents, carry around with us every day and night. There are no days off. Every day rolls into the next. Type 1 diabetes doesn’t give a person or the family a choice to manage this disease—it demands it. The constant monitoring and adjusting of a person’s sugar level governs every hour of every day. To maintain a constant and balanced sugar level is impossible for a person with type 1 diabetes.’

Within the past few months, Thomas, who was diagnosed at age two, had an episode that could be repeated any night. Lorraine had checked his sugar levels before going to bed, but later in the middle of the night checked him again on a feeling, on an instinct. He registered a reading of 2.2—dangerously low as a night-time level. Had she not done this, Thomas most likely would have slipped into a coma. Thomas’s twin sisters are so far not showing signs of the disease, but they need to be screened for it regularly—another source of fear, stress and worry for their parents. Lorraine said, ‘I am completely torn, because I am desperate to know that they are okay but terrified to find out if they might get it.’

From the time of diagnosis of juvenile diabetes the life of the child and parents, especially in the early months and years, is a whirlwind of hospitals, doctors, dieticians and diabetes educators. Every few hours, often more frequently, the child’s blood sugar levels must be monitored—day and night. The parents must learn to measure the appropriate insulin dose up to six times in 24 hours, and to manage a syringe or an insulin pen. Later, some children are fortunate enough to be suitable for, and have access to, an insulin pump at a cost of around $8,500. Not all families, however, are in a position to afford the cost of a pump, and so their child misses out on the health and social benefits that an insulin pump can bring. This is an issue that needs to be addressed.

Parents plan ahead, manage the financial issues as best they can, source equipment and supplies, and read the labels on food products incessantly to find the right balance of carbohydrates and other dietary requirements. They are constantly vigilant, checking their child for signs of low or high blood sugar levels. New concerns arise as time goes on: visiting family and friends, travel, starting at school, self-testing and self-administering. Adolescence brings new challenges. Emotional and physical support, education, and safe, effective self-care protocols are all paramount issues. This is the reality that a family of a child with type 1 diabetes faces. There is to date no cure.

The effects of the disease on quality of life are not only immediate but cumulative. Over time, chronically high levels of blood glucose permanently damage blood vessels and the tissues and organs they supply. Affecting almost every organ in the body, diabetes can lead to serious complications, including diabetic eye, kidney and nerve diseases, and cardiovascular disease. The early onset of type 1 diabetes means that children and young people—those at the start of their lives—may face serious complications while they are still in early adulthood.

None of us can ever assume that this cannot happen to us or our families. In fact, the reverse is true. Some 80 per cent of people diagnosed with type 1 diabetes have no family history of the disease. There are now 140,000 Australians living with type 1 diabetes; 8,665 of these range in age from newborn to 18 years. This figure is expected to rise to 12,241 in three years, with five new diagnoses each day. A new report by the Australian Institute of Health and Welfare shows that the rate of new cases of type 1 diabetes in Australian children, already high relative to other countries, is increasing. Diabetes is now one of the most prevalent chronic diseases in Australia, representing an enormous health, social and financial burden for individuals with the disease, their families and the community as a whole.

There is only one way for people with type 1 diabetes to achieve the quality of life and the life span that those who do not suffer this disease can reasonably expect—and that is a cure. Research is the key to finding a cure. The Juvenile Diabetes Research Foundation is the world’s leading non-profit contributor of funds to diabetes research and has been closely associated with almost every crucial step forward in diabetes research since 1970. Today I have invited my South Australian federal parliamentary colleagues from all political parties to join together for the foundation’s 2007 Walk to Cure Diabetes, which will take place in Adelaide on Sunday, 14 October from Wrigley Reserve, Glenelg to North Brighton and back. Many South Australian state members of parliament have already indicated their commitment to participate. Similar events are planned for Perth, Brisbane, Sydney, Melbourne and in regional areas on the same day. In Canberra it will be on Sunday, 21 October.

Hundreds of South Australians are expected to join in the walk, raising funds—some as individuals, some as teams, all dedicated to raising funds to support ongoing research. There is hope for the future with the extension of research into islet transplantation hopefully leading to a pathway for a cure. Research and adequate funding for that research are crucial to finding the cause, which may lead to prevention and a much wanted cure for those that live their lives with type 1 diabetes.