The Warwick Foundation is advocating for a new model of care for adolescents and young adults (AYA) with cancer. There is an urgent need for change and improved care for AYA cancer patients because the increase for survival of this age group is lagging significantly behind that of paediatric and adult patients.

Why is this the case?

The cancers in this age group are often rare, but we treat these patients in hundreds of non-specialist hospitals around Australia.

For example, in Victoria alone, 67 hospitals treated one or more AYA cancer patients in the last year. This is in spite of the fact that the cancers in this age group have a mix of paediatric, older adult and young adult cancers.

• Access to clinical trials is poor, despite the strong evidence that trials and different protocols make a huge difference to outcomes.
• 2% of 20-30 year olds with cancer in the USA were treated on a clinical trial protocol, compared with 60% under the age of 10. For some cancers in this age group, survival differences of up to 50% have been found comparing different protocols.
• Support needs for this group is unique and great, yet age-appropriate support services are generally not provided for this group in our system.

In 2005, the Senate Community Affairs Reference Committee conducted an inquiry into services and treatment options for persons with cancer. Two of its recommendations focused on young people:

• The committee recommends the development of appropriate referral pathways that take account of the particular difficulties confronted by adolescents and young adults with cancer
• The Committee recommends that state and territory governments recognise the difficulties experienced by adolescents and young adults being placed within appropriate age groups, and examine the feasibility of establishing specialised adolescent and young adult cancer care units in public hospitals

The Proposed Model

Adolescent and young adult - the range will extend at least to the mid-twenties (e.g. the international age range definition for a young adult is to 25). We at the Warwick Foundation propose they extend the age to 40 years as the evidence suggests that the survival rates begin to increase after this age and these days people to the age of 40 are left out of the support system when they are in the prime of their lives with young families, and at the peak of their career, so having cancer has a significant effect on this group and their families.

• Adult and paediatric collaboration - the AYA cancer centres will involve collaboration between paediatric and adult cancer specialists; the centres should be shared between major paediatric and adult hospitals
• Age-appropriate support services - AYA cancer centres will include a range of age-appropriate support services (psychology, social work, education support, peer support), including a combination of in-house services and shared services.
• Distributed support model - Where possible, patients will receive treatment locally, with support services provided through a "hub and spokes" support model: this may be facilitated through the provision of care navigators. High-risk cancers would be treated more centrally.
• Age-appropriate environment - the cancer centres will have an environment appropriate for the age group including facilities for continuing education and receiving visiting family and friends.
• Improving protocols - the centres will facilitate and participate in an increasing number of clinical trials. Treatment for rare cancers will improve through improved critical mass of patients, even where an appropriate trial may not exist.
• Improving referral - the centres will facilitate best-practice referral for the age group.

There is still a lot of work to be done to achieve this model of care. Work on the detail is ongoing. Working parties in different states are developing more detailed models, scoping them and developing cost estimates.

Our Mission at the The Warwick foundation is to improve the cancer journey for all young adults living with cancer in Australia. With the services/information we offer through our website as well as advocating for care centres such as this. We believe changes like this will occur and improve the current cancer journey for young adults.

We need your support. If you are a patient, survivor, caregiver, health professional or someone who has been touched by cancer and wants to make a difference, you can advocate for change and support the establishment of care centres in Australian public hospitals.

Please sign the letter of support below and fax back to us at The Warwick Foundation on 03 9379 1785 begin_of_the_skype_highlightingend_of_the_skype_highlighting.

Letter of Support

Creating awareness of the needs and unique issues that young adults with cancer face is imperative if we are to achieve the changes needed in Australia. As you know many charitable organisations focus on kids and the elderly with little being done for generation x and y. We need to spread awareness as an organisation but you too as an individual or group (workplace) can help.

• Join our cause on Facebook and invite all your friends
• Friend us on Planet Cancer
• Blog about us
• Status update our name and website address on Twitter
• Buy our T-shirts and thongs from our Online Shop and wear them all the time!
• Tell your social worker, GP, oncologist and nurse about us
• Fundraise for us, see our fundraising ideas section
• Volunteer for us
• Ask for our postcards and distribute them at your hospital, university or workplace