The most remarkable achievement was the enthusiasm showed by the type 1 diabetes community in talking with politicians about the Clinical Trial Network (CTN), an important initiative to improve access to new therapies and technologies for Australians with type 1 diabetes.

For the first time, thousands of kids and adults with type 1 diabetes from around Australia, alongside their families and friends, worked together to help federal politicians understand the importance of a $35m government commitment for the CTN.

To all those members of our community who put in such an incredible effort to secure government funding for the CTN, congratulations and heartfelt thanks. Federal politicians received a message loud and clear about increased support for type 1 diabetes clinical trials.

Working together to deliver results:

• In March, Kids in the House families secured a $5m grant for the CTN from the Federal Government. This is a good first step and represents an amazing effort by Youth Ambassadors, their families and JDRF President Sue Alberti. However, it doesn’t guarantee certainty of funding for multi-year clinical trials, which means that advocacy efforts will continue.
• JDRF and Advocates secured an election commitment of $35m from the Coalition. This is the full amount needed to significantly increase the number of clinical trials pursuing a cure for type 1 diabetes in Australia.
• More than 8,000 emails were sent to the Prime Minister and the Minister for Health asking for their support for a CTN.
• Nearly 100 newspaper and radio stories about the CTN appeared in media around Australia.
• Hundreds of phone calls were made to MPs across the country, making personal requests of support for the CTN.

What’s next?

Australia has a new government headed by Julia Gillard and supported by several Independent MPs. It is clear that CTN Advocates made a big impact on MPs on all sides of politics in the lead up to the election – thank you again to all those involved for your incredible efforts. The strong relationships that were developed will remain the key to encouraging significant Government support for research in to type 1 diabetes through the CTN.

The next potential means of support is through the Federal Budget. JDRF are working closely with the Government in our attempts to get a commitment to $35m of further funding for the CTN, as was the focus of the election campaign. We hope you will remain involved.

Thanks to all the letters, emails, phone calls and media releases, the campaign for a Clinical Trial Network is having a big impact.

Unfortunately, no government commitment has been made, so funding for the clinical trials in Australia is still uncertain.

With three weeks before the federal election, JDRF is setting a new challenge to advocates:

Make your voice heard today…

Take your Advocacy to the next level by becoming a Type 1 Leader…

Ask your friends and family to support your advocacy:

So far, advocates have not received the answer they are desperately hoping for but it is not too late to get involved.

The Government has not yet given a commitment for $35m for the Clinical Trial Network.

Blue Mountains mother Nicole Ashcroft, whose daughter Madison has type 1 diabetes said, “This issue means everything to me, because one day my child’s life might depend on the technology that is currently available overseas. I’m making a personal plea to the Prime Minister to support us.”

In the lead-up to a Federal election, people affected by type 1 diabetes are putting pressure on the Government to match the Coalition election commitment of $35 million to JDRF for the CTN. The $5m given by the former Prime Minister is not enough because children and adults with type 1 diabetes need certainty about funding to participate in multi-year clinical trials.

President of JDRF Susan Alberti AO was moved to send an urgent letter directly to the Prime Minister, saying that the CTN was simply critical.

“Medical research has given people with type 1 diabetes a life they could only dream of 20 years ago. Australia has traditionally been a leader in this field, participating in some of the most significant breakthroughs. But I am sorry to say our country is falling behind. Australians with type 1 diabetes have significantly less access to exciting new therapies and technologies than people in other countries.”

JDRF’s advocacy campaign has given families with type 1 diabetes the tools they need to send emails, letters and media releases to MPs and newspapers across the country. There is still 3 weeks to run in the election campaign. Sign up now or take your advocacy to the next level with a media release and phone call.

CEO of JDRF Mike Wilson said he was hearing concern from the type 1 diabetes community about the new $450 million diabetes program and the new panel appointed to help the government deliver it.

“Without input from the type 1 diabetes community, there is a risk that medical care for children and adults with the most serious form of the disease will not be addressed by this major new program.”

“This funding commitment appears to have put pressure on the government’s funds for diabetes, leaving research funding to find a cure for type 1 diabetes facing a major drop off in 2011.”

President of JDRF Susan Alberti AO was moved to send an urgent letter directly to the Minister for Health about the Advisory Group.

Susan said she was disturbed to learn that JDRF, the peak body for people with type 1 diabetes, had not been invited to join the Advisory Group to help deliver the major $450 million program.

“It appears that this new program will mostly benefit those at risk or in the early stages of type 2 diabetes. While we welcome funding for prevention and treatment of type 2 diabetes, it is important to recognize that this will not help the up to 140,000 people with type 1 diabetes to live longer healthier lives.”

“The health of most children and adults with type 1 diabetes benefits from the involvement of medical specialists like endocrinologists because, when not managed effectively, type 1 diabetes can and tragically too often does, lead to death.”

JDRF has asked the government to commit $35 million for a Clinical Trials Network. Make your voice heard to help ensure the Clinical Trial Network secures the full funding.

Clinical trials are usually the last stage of the research process, capping off years of laboratory and animal research. Their ultimate aim is to obtain a realistic picture of what would happen if a medical treatment was available to the Australian public.

Three different phases

Whilst clinical research can be conducted into any aspect of the disease process – from preventing the disease to identifying people at risk or stopping complications – all new therapies or medical protocols must go through a strict three-phase process before your health care professional can recommend them to you.

A Phase 1 trial evaluates the best way to use a new therapy and collects vital information on how it impacts humans including how safe it is. As the first step out of the laboratory, these trials usually only enroll a small number of patients that fit a strict selection criteria. They are often conducted in closely monitoring surroundings such as a hospital or clinic.

If a phase 1 trial shows the therapy is safe it moves to Phase 2. These trials usually involve a bigger range of people to identify long term safety and effectiveness under different circumstances (eg is the treatment suitable for people of a certain age or disease stage). They are also used to determine different dosing requirements.

The final stage is a Phase 3 trial which often involves the new treatment being compared to an existing treatment to check that it is useful and worthy of being made widely available. These are trials are often national or international and may involve thousands of people.

It all takes time

According to JDRF Head of Research Development, Dr Dorota Pawlak, the different phases of the clinical trial process can take up to ten years to complete.

“Researchers can and do check the effectiveness of a treatment in the laboratory, but the truth is no one really knows what effect it will have on humans until it’s been taken out of the lab and tested on them.”

“Even if everything goes to plan, the clinical trial phase will usually continue for years after lab research has finished.”

Should I participate?

Without volunteers, trials would not go ahead and the potential new treatments, preventions and cures would never make it to market.

Most clinical trials will recruit people within a specific set of criteria to ensure the best and safest outcome.

“Safety is an issue with any experimental procedure, but approved clinical trials will always be designed to minimise risk and maximise health benefits. In most cases, trial participants receive excellent health care whilst on the trial.”

“There are a number of benefits to joining a clinical trial. For some, the biggest benefit is gaining access to new or expensive treatments or specialized care. For others, knowing they are contributing to life saving research is reward enough.”

Important questions to ask before joining a clinical trial

There are a number of important questions you should ask before considering clinical trial participation.

• Has this trial been approved and registered by an appropriate governing body?
• Why is this trial important and what will the results mean to me?
• What are the possible risks and side effects? Will any side effects happen now or years later?
• What will taking part involve (time off work, medical tests, special diets etc)?
• Is there any travel required and will I be reimbursed for this?
• How will my privacy be protected?
• Will the results of the trial be made available to me and will I be able to find out what treatment regime I was on?

JDRF and the Clinical Trial Network

The recent Australian government commitment of $5 million to a Clinical Trials Network is a strong first step that has been applauded by the type 1 diabetes community. However, delivering increased access to clinical trials will require significantly more investment. JDRF forecasts that $35 million is needed to establish this innovative clinical trials model, which will have comprehensive linkages to Australia’s research landscape as well as international projects.

The case for support is strong, with positive return on investment for the health system and increased international investment in local research some of the economic benefits. The human rationale for access to the latest treatments and technologies is more powerful again. For people with type 1 diabetes, the CTN will enable easier identification of suitable clinical trials, allow participation in a wider range of trials and accelerate the research process to allow therapies to be available sooner.

To help JDRF’s efforts to secure the funding needed for the Clinical Trial Network, join now to become an official JDRF Advocate.

One hundred JDRF Youth Ambassadors aged 3 to 32, all with type 1 diabetes, converged on Parliament House to personally ask for government funding for type 1 diabetes research and a Clinical Trials Network (CTN).

Photo: 247 Studios

Prior to the PM’s arrival at the presentation, supporters, including nearly 100 MPs and Senators, simultaneously pricked their fingers to check their blood sugar in a gesture of solidarity for those who live with type 1 diabetes and must do this up to 8 times a day.

Dr Alberti’s personal commitment of $500,000 is the inaugural donation to the JDRF CTN Fund, which is targeted to reach $10 million. Total funding required to establish a CTN in Australia is forecast at $50 million.

The Prime Minister said “Dr Susan Alberti AO is one of Australia’s leading philanthropists, and her tireless commitment to diabetes research is an example to all”.

Dr Alberti said “I am pleased to be playing my part in establishing a Clinical Trials Network in Australia to improve the lives of all the children and adults affected by this disease.”

JDRF CEO Mike Wilson welcomed the commitments made by Dr Alberti and the Prime Minister as an important initial step towards launching a CTN.

“This is a strong and positive first step towards the proposed $40m of Government support to enable the establishment of an Australian CTN.”

“Australia is home to some of the world’s top scientists and we punch above our weight in terms of research, but there is room for improvement translating research into outcomes for patients.”

“A Clinical Trials Network would attract international clinical trials and new investment to Australia, and help the best Australian science progress to where people can benefit. We should take every opportunity to be the clever country.”

“Public investment in research delivers substantial long term benefits and a Clinical Trials Network would be one step towards reducing one of the heaviest burdens on Australia’s health system – diabetes.”

“Australia has one of the highest rates of type 1 diabetes in the world and the rate of new cases in Australian children is rising by 3% every year. This situation is urgent.”

The 100 Youth Ambassadors from electorates across the country spent the day meeting personally with MPs to explain why they desperately need government funding for projects like the CTN, to improve Australian patients’ access to the latest science and speed up the process of curing this serious disease.

They were joined by one of the newest recruits of AFL team The Western Bulldogs, Sam Reid. Sam announced earlier this year that he was diagnosed with type 1 diabetes in November. He joined the Youth Ambassadors to share stories about managing blood glucose levels during sport.

Supported by a crowd of family members, total numbers at Kids in the House will hit 300. They are visiting Canberra as representatives of the 140,000 children and adults in Australia with type 1 diabetes, and the tens of thousands more who care for them.

The Youth Ambassadors will personally meet with nearly 100 MPs to explain why they desperately need government funding for a Clinical Trials Network, which would improve Australian patients’ access to the latest science and speed up the process of curing the serious disease they will otherwise have for life.

JDRF CEO Mike Wilson said it was critical for MPs to understand the serious health implications of type 1 diabetes and the need for continued support of Australian research.

“Australian patients deserve access to the best science, and we should take every opportunity to be the ‘clever country’.”

“The Clinical Trials Network will turn the best science into benefits for patients, by helping to translate the best of Australian research into improved clinical outcomes and attracting international trials and investment to Australia.”

“Investment in the Clinical Trials Network would be a continuation of existing research support, and JDRF will leverage this funding with help from local philanthropists.”

“We know that public investment in research delivers returns, so support of the Clinical Trials Network is a step toward reducing one of the heaviest burdens on Australia’s health system – diabetes.”

“On top of this, the human impact of a cure is incalculable.”

“Australia has one of the highest rates of type 1 diabetes in the world and the rate of new cases in children in this country is rising by 3% every year. This situation is urgent.”

Sign Our Petition

Show your support for The Clinical Trials Network by signing our petition below. We will give the signatures to the Prime Minister at the Kids in the House event. Send this page to your friends, family and collegues now as it will be given to the Prime Minister on Thursday 17th March.

Please note, you must have a valid email address for your signature to be recorded. Your email address will NOT be recorded.

The program was first launched in 2008 and provides a means-tested subsidy towards the purchase of an insulin pump for children under 18 who do not have access to private health insurance.

In Australia insulin pumps can cost up to $8,000, making them a medically desirable but unaffordable option for many without private health rebates.

Children under 18 with type 1 diabetes will now be eligible, on the recommendation of a health professional, for a subsidy of up to 80% of the cost of an insulin pump, to a maximum of $6,400 and a minimum of $500.

The subsidy will be means-tested and based on a sliding scale reflecting gross family income.

This program will potentially impact around 500 Australian children with type 1 diabetes who would benefit from moving from multiple daily insulin injections of insulin pump therapy.

JDRF CEO Mike Wilson said increased access to insulin pumps had the potential to dramatically change many hundreds of lives.

“Children with type 1 diabetes face a huge strain juggling the management diabetes with the demands of daily life. We know that insulin pumps can make this daily and lifesaving management much easier.”

“More importantly, pumps are the best way for many patients to improve their chances of a healthy future, making this subsidy a win-win for people with type 1 diabetes and Australia’s health system.”

The Type 1 Diabetes Insulin Pump Program is a collaboration between the Juvenile Diabetes Research Foundation and the Department of Health and Ageing.

For more information for patients about the Type 1 Diabetes Insulin Pump Program, please contact Chanelle Stowers on 02 9966 0400 ext 223 or cstowers@jdrf.org.au.

Alternatively, visit our website for more information and the online subsidy estimator.

Show your support for the insulin pump subsidy

Send a thank you message to the Hon Nicola Roxon MP for increasing the government subsidy.

The Carer Payment provides income support to carers who, because of the demands of their caring role, are unable to support themselves through substantial paid work. The Carer Payment is income and assets tested and paid at the same rate as other social security pensions. Some changes to the Carer Payment will take place from 1 July 2009.

The most important change is to the way qualification for Carer Payment is assessed. The new method that will be used from 1 July 2009 looks at the carer’s total care load.

Other changes include:

• recognising more situations when carers will receive the payment, such as caring for:
  • one child with a medical condition
  • two or more children with one or more medical conditions
• the payment will be available to eligible carers who are looking after a person for a short period of time, that is at least three months, but less than six months
• automatic Carer Allowance for carers who qualify for Carer Payment
• a wider range of health professionals to complete medical forms

Further information

For information about rates, other available assistance or your potential eligibility you can:

• visit the payment page on Centrelink’s website www.centrelink.gov.au
• telephone Centrelink on 13 27 17 or for TTY service 1800 810 586
• visit your nearest Centrelink office.

Do you have feedback about these changes?

If so, you can email the Department of Families, Housing, Community Services and Indigenous Affairs at carer.reforms@fahcsia.gov.au or write to the address below. All feedback will be acknowledged and considered in their review of Carer Payment over the next 12 months.

FaHCSIA – Carer Reform Implementation
TOP CE2
PO Box 7576
Canberra Business Centre ACT 2610