Livestrong Summit October 2006

LIVESTRONG SUMMIT by Linda Bily

Austin, TX

October 27-29, 2006

This inaugural event brought together over 800 cancer survivors, primarily from the United States in a unique combination of inspiration, empowerment, advocacy and “think tank” modules.

Founded by Lance Armstrong in 1997, the Lance Armstrong Foundation is a cancer survivorship organization. It has grass roots support, corporate connections and with over 62 million Livestrong bracelets sold, the ability to reach the politicians through their constituents.

This summit was technologically superior, flawlessly executed and the volunteer staff was committed and superb.

The ability to meet survivors of other cancers and share their unique stories, commitment to advocacy and their own thoughts on how to generate support for the over 10 million cancer survivors in the United States was awesome.

Speakers included NYS Health Commissioner Dr. Antonia Novella, Dr. LaSalle Leffall (Chairman of the President’s Cancer Panel), Mike Milken (Chairman – FasterCures), Steve Case (Chairman Revolution and Accelerate Brain Cancer Cure), Senator John Kerry and Elizabeth Edwards (Author – Saving Graces).

Lance and his staff spoke, as well as several survivors who have done work in their own communities and on the national level as advocates, fundraisers and community awareness leaders. Lance is low-key, affable and passionate about cancer survivorship. His commitment to the cause is easy to identify and his passion resonates through his entire army of staff and volunteers.

Make no mistake about it – LAF is an army, ready to wage war against cancer. They have the tools; they have the passion; they are raising the funds. They will be a force to be reckoned with for many years to come.

Sessions included Identifying Unmet Needs, Brainstorming Possible Solutions and How to Develop a Personal Action Plan. Each delegate received a summary sheet of how their states were ranked in cancer planning. Delegates were assigned to a “think tank” table based on geographic location.

My group included participants from Delaware, New Jersey, New York, Massachusetts, Rhode Island and New Hampshire. Cancers represented included breast, Ewing’s sarcoma, testicular, and brain. Our group also included an oncology nurse and a social worker whose client population included the underserved in Harlem.

At the end of the 2.5 days, we received a summary of the proceedings. According to the consensus, the most prevalent obstacles that cancer survivors face include:

Poor information

Working with the healthcare team

After effects

Insurance/Finances

Lack of Support

Emotional Issues

Practical Challenges

Each of these areas were broken down into sub-categories

What the survivors would change (if they could) about their cancer experience:

Improve patient navigation during and after treatment

Support for caregivers

Improve communications with healthcare team

Take better care of self

More information about financial impacts

Unmet needs of cancer survivors

Access to usable, appropriate information

More flexible and responsive insurance system

Improved patient navigation system

Increased support for survivors and family

Timely financial support and guidance

New standards for communication among survivors and healthcare professionals

Support for practical needs

Empowerment for survivors/families to advocate on their behalf

Each delegate was assigned the task of creating their own action plan – how could we address these issues either personally, on a local or national level? This information will be shared with the participants and all will be tracked and helped as they follow these plans in the months to come.

The event was well-run, overflowing with energy, enthusiasm and a group of potentially powerful new advocates from all walks of life, all ages and all cancers. Given the commitment of LAF to cancer survivorship issues, I expect this event/organization to have a significant impact on future policy and procedures at all levels of community and government.

Linda's website:

http://www.suite101.com/welcome.cfm/breastcancer

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