Patient Advocacy Groups for Young Women Affected

by Breast CancerMegan Dwyer

Brisbane, Australia

Young Women - Advocacy

Background/Statistics

Unique issues for young women

What is advocacy?

Examples

How to get started

Young Women - FactsOne in 14 women with breast cancer is

under age 40One in eight women with breast cancer is

younger than 45 when diagnosed.26% of all cancer in females 15-39 years

of age and 39% of all cancer in 35-39 year olds.

Women ages 15 to 54 die more frequently from breast cancer than any other cancer.

Young Women - FactsIn the U.S.:

almost 12,000 diagnosed annually under 40

almost 23,000 diagnosed annually under 45

Young Women - Challenges

Compared to older women, young women generally face more aggressive cancers and lower survival rates.

Evidence suggests breast cancer before age 40 differs biologically from the cancer faced by older women.

Since breast cancer occurs at a much lower rate among young women than in our older counterparts, we remain underrepresented in many research studies.

Young Women - Challenges

No effective breast-cancer screening tool

Unique issues for young women:The possibility of early menopauseEffects on fertilityQuestions about pregnancy after diagnosisConcerns about body imageChallenges to financial stabilityLong term survivorship issuesGenetics and hereditary breast cancer

What is advocacy?

Advocacy

Advocacy: The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.

Patient Advocacy: Promotion and protection of the rights of patients, frequently through a legal process.

Advocacy

Taking action in order to to benefit others.

Forms of advocacyRaising awareness

Providing support

Sharing your story

Lobbying – policy change (government)

Fundraising

Taking action

Attending a conference

Sharing information and experiences

Examples

Young Survival Coalition

Young Action on Breast Cancer

Amazon Heart

Young Survival CoalitionFounded in 1998

3 women diagnosed under the age of 35

Discouraged by the lack of information and research on young women diagnosed with breast cancer, they founded YSC and became a voice for thousands of young women who are diagnosed yearly with breast cancer.

Young Survival Coalition

The premier international organization dedicated to the critical issues unique to young women and breast cancer.

A powerful community fighting breast cancer in young women.

YSC believes no woman diagnosed under 40 should be left to face breast cancer alone.

Young Survival Coalition YoungSurvival.org Annual Conference for Young Women Affected by Breast Cancer ResourceLink Information and Guidebook SurvivorLink Peer to Peer Support MetsLink: for young women with metastatic breast cancer Educational Videos, Audio Files and Brochures Newly Diagnosed Resource Kits and Treatment Navigator Adopt-A-Hospital Campaign Healthy Young Outreach Ask-the-Expert Series YSC Newsletter The Factor Series- Educational Suites Local support and education programs

Young Survival Coalition

Young women facing breast cancer together.

www.youngsurvival.org

Young Action on Breast Cancer

Young Action on Breast Cancer

Melbourne based voluntary committee of young survivors

Formed in 2004 to address advocacy issues

Mission: YABC is committed to advocating the unique needs and issues which face younger women affected by breast cancer providing them a voice.

Young Action on Breast Cancer

Collaborate with other organisations to ensure the best outcomes for young women diagnosed with breast cancer

Seek sponsorship an funding to develop projects

Volunteers help bring initiatives to fruition

The Care PackageProvides practical help,

and comfort to the newly diagnosed young woman

Supports young women and their families at a time when they most need it

Alleviates some of the financial, domestic and emotional burden faced by younger women when diagnosed

1st National Conference for Young Women

Held in October 2007 in Melbourne

Approx. 170 women from across Australia attended

Conference was provided free of charge to survivors

Workshops held to identify and discuss issues

Amazon Heart

Amazon HeartAdventures for Breast Cancer Survivors

Amazon HeartAwareness

Media

Telling stories

Peer support

Fundraising

IMPACT!

How to get startedWhat are you passionate about?

Who shares your passion?

Brainstorm

Develop a plan of action

Get started and stick with it!

Who will you impact?

Thank you!

Questions? Ideas?

Megan Dwyer

megandwyer@cancerqld.org.au