Livestrong Summit Summary of Keynotes and Pictures 2006
Oct/Tuesday/2006 01:20 AM Filed in: LIVESTRONG
This is a summary of the exciting events of the first
Livestrong Summit in Austin Texas, including
summaries of keynote speakers, including Steve Case,
Mike Milken, John Kerry, and Elizabeth Edwards.
My
LIVESTRONG experience, October 2006
I was thrilled to be a delegate for the first, ever LIVESTRONG Summit, but nothing prepared me for the emotion and impact it would have on me.
I arrived in Austin, and immediately went to the convention center to get my first-come first- serve tickets to the recording of CNN's Town Hall Meeting, "The State of Cancer in America" (to air late January) with Lance Armstrong and Sanjay Gupta, that first night. Success! I went to check in at my hotel, which was filled with delegates waiting to check in. Excitement was in the air with 700 delegates from 49 states (representing 44 types of cancer)!
I walked back over to the convention center hall and prepared myself for the opening keynotes. The drama of the opening was memorable and hard to understate. The stage was beautiful and dramatic (you can see pictures at www.livestrong.org). Standing on the stage, were 8 survivors in yellow shirts. In the background were large images of the "faces" of survivors. The music was playing, and one at a time the spotlight would go to each person as they made a one sentence statement about their experience with cancer. They began with statements reflecting the fear and loss a diagnosis brings. Their stories changed to those of advocacy, leadership and empowerment. "I am going to live my life on my terms," as one said, which brought a loud roar from the crowd.
Then the words came, "We're a nation of 10 million cancer survivors — LIVESTRONG!" and the crowd rose to their feet. In perfect timing, Lance walked out to greet the crowd, saying, "I'm Lance and I'm a 10-year testicular cancer survivor." Louder applause and cheers continued between tears and hugs with this family of survivors, as he began the Summit.
A particularly emotional moment came for me when they began to recognize some of the delegates who had really wanted to be there, but were unable, due to current treatment or other reasons. Up on the screen they showed my colleague, Karen Hornbostel, a metastatic breast cancer survivor, world class cyclist, exercise physiologist, and director of cancer/exercise programs in Denver. Karen, myself, and another colleague had recently been accepted as presenters at the ACSM annual meeting next year to talk about the work we are doing with survivors. I met her in June at ACSM's Cancer Interest Group, and was looking forward to getting to know her better at the LIVESTRONG Summit. We'd exchanged numerous e-mails over the last months. I was unprepared for the next announcement. "Karen lost her lost fight with breast cancer and passed away on Tuesday, surrounded by family and friends." Words really can not express the sadness and shock I felt. I was filled with sadness not only about her life being cut short, but about the cancer community losing someone who had worked so hard for them. And sad that her dream of presenting would go unfulfilled. We will honor her work at the ACSM meeting next year and name a student scholarship after her. This moment strengthened my resolve to do my part to change the face of cancer.
Overall messages I came away with:
• We are a country of ten million survivors strong. We have a large voice for creating change.
• One thousand Americans die every day of cancer. We can put an end to this disease, by making cancer a national priority.
• Survivability is high for most cancers when detected early. We can drastically lower the number of deaths by early detection.
• Survivors have many unmet needs; together we can meet them.
• We need to think outside the box to have breakthroughs.
Other highlights:
• Highly efficient work sessions with high tech equipment engaging all 700 delegates to brainstorm unmet needs of survivors and then solutions. Each table was equipped with a laptop tied into a wireless network, where feedback was instantaneously transmitted to a central database and within minutes more than 3,200 inputs had been recorded.
• Going to the CNN Town Hall Meeting on the UT campus where Austin City Limits is filmed and meeting Dr. Sanjay Gupta
• Being interviewed by CNN about my survivor story
• Meeting Elizabeth Edwards in person, holding her hand, getting a picture with her
• Meeting lots of wonderful delegates, particularly those in NC!
• Team building with 700 African drums in a "Drum Cafe"
• Fajita dinner at the Austin Music Hall, complete with a Mariachi Band, Mexican dancers, and the Texas Aggie Wrangler country and western dance team
• Finale: "Wide Awake" played their song, Maybe Tonight, Maybe Tomorrow, written by lead singer Scott Leger after a band member was diagnosed. Awesome song. Everyone was on their feet singing, crying, clapping... All proceeds from the sale of it go to the LAF and can be purchased on iTunes. Lyrics on the LAF web site.
Key points that were memorable from the high profile speakers:
Dr. Antonia Novella, the first female and first Hispanic U.S. Surgeon General, spoke on "The Power of Cancer Survivors as Advocates." :
• We need to teach doctors how to care for us with concern and passion.
• We need to teach prevention as well as teach patients to advocate for themselves.
• We need to improve communication between physician and patient. Doctors are often dismissive, callous, impatient, judgmental. The "how we tell" is as important as the "what" in talking to patients.
• Quote from Mother Theresa, "God won't give me more than I can handle; I wish he didn't trust me so much."
• Doctors don't listen to patients; on average, it's 18 seconds before they interrupt.
• "Kind words from a health care provider are more than just words; their echoes are endless."
Jim Collins, author of the best-seller "Good to Great."
• Become a hedgehog- focus on what you do well and then focus, focus, focus. Individuals should follow their passion, natural talent, and gather resources at your disposal
• We need to be ruthless and relentless. "Don't be afraid to win the fight."
• To apply his principles to a social movement or cause, the "who" is always over the "what". Get the right people on the bus. Determine who your partners are. The three stages are: 1) Disciplined people 2) Disciplined thought 3) Disciplined action
• Stockdale paradox: Prevailing over an oppressing situation or circumstance. Admiral Stockdale, highest ranked POW 1967-74 was asked how did he not lose faith during captivity and being tortured over 20 times. He said you must face the most brutal facts and reality of the situation and have absolute unwaivering faith that you will prevail. Those that were optimists saying "We'll be out by Easter, by Christmas, etc." died of a broken heart.
• Discipline begins not with what you do, but what you do NOT do. Choose the piece of the passion circle that speaks to you and whatever you choose make a gigantic contribution, get the right people involved, and have a BHAG (big, hairy, audacious goal)
• It's all about the who- life is people. He used to think it was about the what. Join with the "who's" to make a difference.
Dr. LaSalle D. Leffall, Jr., head of the President's Cancer Panel
• In order to come to the conference, he saw patients on Thursday starting at 3:30 in the MORNING!! Talk about dedicated!
• Quality of life is important for survivors, it's not how long but how they live. He wanted people to, "die young - as late in life as possible!"
• Prevention key. "Research is the creation of new knowledge and the expansion of old."
• HC providers should give patients the"grace notes" , as in music, that make a song particularly beautiful by showing genuine concern for them.
• Importance of hope, calling it the "joy of anticipation," and then challenged the delegates to be genuinely willing to do a little extra in the fight against cancer.
Steve Case, AOL Co-founder, founder of Revolution Health
• Vowed to devote the next 10 years to make the healthcare system more accessible. "It's a broken system that equates to one-sixth of our economy where patients still feel disenfranchised," he said. "We need to devise a personal system versus the one-size-fits-all version that we have now."
Harold Freeman, Medical Director of the Ralph Lauren Cancer Center (CNN Town Hall Meeting)
• Close the gap between what we know and applying to the masses; early detection saves lives (with cervical cancer 100%; breast 98%; colon 60%, etc.).
• We need culturally sensitive messages in language people understand.
• Cancer is a process, not an event.
John Kerry, U.S. Senator, prostate cancer survivor
• His father died of prostate cancer
• Three areas he believes need attention:
Awareness, since approximately half of all cancer is preventable through simple lifestyle changes like proper nutrition, not using tobacco products and receiving proper screenings.
Adequate healthcare, unlike the current system which he deemed, "…apartheid — separate and unequal - and unacceptable."
Unity, with more than 60 million yellow wristbands sold the Lance Armstrong Foundation truly has the opportunity to build an army in the fight against cancer. "You can take this experience, take this issue, and take it to the ballot box," he said. "You need to connect the dots. Survivorship is not a state of grace; it is a state or responsibility."
Mike Milken, Chairman of Faster Cures, noted philanthropist and prostate cancer survivor
• We need to see the world of cancer through new eyes "Doing things the same old way doesn't lead to breakthroughs." He also used the example of Elvis Presley getting a polio immunization in the 50's to demonstrate how one person can make a huge difference. "Before that photo was taken of Elvis getting that shot, there was a huge opposition to getting that immunization. Afterwards, everyone got it - and as a result polio today has essentially been eradicated.
• Important to support the professionals who are in the trenches coming up with new innovations, "building human capital" as he phrased it. He concluded his speech by saying that cancer research needs to move from being reactive to predictive and finally to preventive. "Just from a financial perspective, it's been estimated that defeating cancer would save $46.5 trillion dollars! That's 3 1/2 times the U.S. economy - to say nothing of the pain and suffering that would be eliminated, too."
• 1% reduction in cancer death= $500 billion
Elizabeth Edwards, breast cancer survivor, advocate and author of Saving Graces
• Relied on hope. "I know that hope isn't always enough, but without it we've already begun to die."
• Wasn't always a warrier with her treatment. "Killing it is killing me..."
• She received one hundred thousand cards and letters from fellow cancer survivors; the connections helped her get through it. She read many of them and was incredibly down to earth.
From the LIVESTRONG web site, the following are the unmet needs and potential solutions from the work groups:
Obstacles:
Poor Information
Working with your Health Care Team
After Effects of the Disease
Insurance / Finances
Lack of Support for the Patient
Supporting Your Family
Emotional Issues
Practical Challenges (child care, transportation, etc)
Changes Desired:
Improve Patient Navigation
Need for Support for Caregivers
Improved Communication with the Healthcare Team
Take Care of Myself
Support and Information About Financial Impacts
Potential Solutions:
Cancer survivors need:
– Access to usable and appropriate information
– More flexible and responsive insurance system
– Improved patient navigation system during and after treatment
– Increased support for survivors and family
– Timely financial support and guidance
– New standards for communication among survivors and healthcare professionals during and after treatment
– Support for practical needs during and after treatment
– Empowerment of survivors and families to advocate on their behalf
Access to usable and appropriate information
– Create a clearinghouse linking available resources
– Synthesize and organize information – Don’t create more
– Ensure Reliability of Information
– Create wider dissemination of the LIVESTRONG Notebook
– Provide information available outside of health care setting (hair salons, bodegas, libraries)
– Provide information “Starter kit” at diagnosis
– Have MDs provide diagnosis information and/or end of treatment plans
More flexible and responsive insurance system
– Expand coverage/reimbursement to cover:
– Ombudsman for your insurance issues
– Coordination and communication between MDs, patients & insurance companies
– Advocate to make insurance reform a national priority
Improved patient navigation system
– Develop standards of care
– Train professional staff on information which is culturally relevant and unique to the survivor
– Collaborate with schools (Universities), local resources, employers, insurance companies and government agencies
– Create an information packet addressing all aspects of survivorship
– Teach survivors to self-advocate
– Allow for equal access to patient navigation
– Model after systems that are already working
Increased support for survivors and family
– Involve all members of community:
– Train/educate the healthcare team on cultural competency, open dialogue
– Community outreach
Timely financial support and guidance
– Require that all costs of treatment options be presented up-front
– Develop a program/document that helps someone navigate financial issues of diagnosis and treatment
– Provide no-interest loans to cancer survivors to assist with treatment costs
– Develop a program where financial experts/planners can donate their time to cancer survivors to help manage finances
– Advocate for health insurance or healthcare for everyone
New standards for communication among patients and healthcare professionals during and after treatment
– Common information resources to standardize communication (e.g. patient records, drug interactions, guide to questions patients should ask, etc.)
– Ensure all patients receive copies of their medical records and care summaries
– Define roles of the Healthcare Team: What does a social worker do and what types of issues should you bring to your social worker?
– General health care professional training on communication with patients
– Teach medical students how to communicate effectively
Support for practical needs
– Improve access to transportation
– Provide child care services
– Develop organizations and volunteer networks to provide practical assistance (e.g., Meals on Wheels, mowing the lawn, shopping, cleaning)
– Create programs like Big Brother/Big Sister specifically for cancer patients
– Increase # of survivorship/wellness centers and programs for survivors after treatment
– Develop a website (like match.com) for cancer survivors to match with other survivors
Empowerment of survivors and families to advocate on their behalf
– Advocate for a Patients’ Bill of Rights
– Offer to personally help another cancer survivor
– Conduct a national advertising campaign to help cancer survivors advocate for themselves
– Create a “Certified Cancer Educator” program where people can be trained to help survivors navigate the system and be an advocate on survivors’ behalf
I was thrilled to be a delegate for the first, ever LIVESTRONG Summit, but nothing prepared me for the emotion and impact it would have on me.
I arrived in Austin, and immediately went to the convention center to get my first-come first- serve tickets to the recording of CNN's Town Hall Meeting, "The State of Cancer in America" (to air late January) with Lance Armstrong and Sanjay Gupta, that first night. Success! I went to check in at my hotel, which was filled with delegates waiting to check in. Excitement was in the air with 700 delegates from 49 states (representing 44 types of cancer)!
I walked back over to the convention center hall and prepared myself for the opening keynotes. The drama of the opening was memorable and hard to understate. The stage was beautiful and dramatic (you can see pictures at www.livestrong.org). Standing on the stage, were 8 survivors in yellow shirts. In the background were large images of the "faces" of survivors. The music was playing, and one at a time the spotlight would go to each person as they made a one sentence statement about their experience with cancer. They began with statements reflecting the fear and loss a diagnosis brings. Their stories changed to those of advocacy, leadership and empowerment. "I am going to live my life on my terms," as one said, which brought a loud roar from the crowd.
Then the words came, "We're a nation of 10 million cancer survivors — LIVESTRONG!" and the crowd rose to their feet. In perfect timing, Lance walked out to greet the crowd, saying, "I'm Lance and I'm a 10-year testicular cancer survivor." Louder applause and cheers continued between tears and hugs with this family of survivors, as he began the Summit.
A particularly emotional moment came for me when they began to recognize some of the delegates who had really wanted to be there, but were unable, due to current treatment or other reasons. Up on the screen they showed my colleague, Karen Hornbostel, a metastatic breast cancer survivor, world class cyclist, exercise physiologist, and director of cancer/exercise programs in Denver. Karen, myself, and another colleague had recently been accepted as presenters at the ACSM annual meeting next year to talk about the work we are doing with survivors. I met her in June at ACSM's Cancer Interest Group, and was looking forward to getting to know her better at the LIVESTRONG Summit. We'd exchanged numerous e-mails over the last months. I was unprepared for the next announcement. "Karen lost her lost fight with breast cancer and passed away on Tuesday, surrounded by family and friends." Words really can not express the sadness and shock I felt. I was filled with sadness not only about her life being cut short, but about the cancer community losing someone who had worked so hard for them. And sad that her dream of presenting would go unfulfilled. We will honor her work at the ACSM meeting next year and name a student scholarship after her. This moment strengthened my resolve to do my part to change the face of cancer.
Overall messages I came away with:
• We are a country of ten million survivors strong. We have a large voice for creating change.
• One thousand Americans die every day of cancer. We can put an end to this disease, by making cancer a national priority.
• Survivability is high for most cancers when detected early. We can drastically lower the number of deaths by early detection.
• Survivors have many unmet needs; together we can meet them.
• We need to think outside the box to have breakthroughs.
Other highlights:
• Highly efficient work sessions with high tech equipment engaging all 700 delegates to brainstorm unmet needs of survivors and then solutions. Each table was equipped with a laptop tied into a wireless network, where feedback was instantaneously transmitted to a central database and within minutes more than 3,200 inputs had been recorded.
• Going to the CNN Town Hall Meeting on the UT campus where Austin City Limits is filmed and meeting Dr. Sanjay Gupta
• Being interviewed by CNN about my survivor story
• Meeting Elizabeth Edwards in person, holding her hand, getting a picture with her
• Meeting lots of wonderful delegates, particularly those in NC!
• Team building with 700 African drums in a "Drum Cafe"
• Fajita dinner at the Austin Music Hall, complete with a Mariachi Band, Mexican dancers, and the Texas Aggie Wrangler country and western dance team
• Finale: "Wide Awake" played their song, Maybe Tonight, Maybe Tomorrow, written by lead singer Scott Leger after a band member was diagnosed. Awesome song. Everyone was on their feet singing, crying, clapping... All proceeds from the sale of it go to the LAF and can be purchased on iTunes. Lyrics on the LAF web site.
Key points that were memorable from the high profile speakers:
Dr. Antonia Novella, the first female and first Hispanic U.S. Surgeon General, spoke on "The Power of Cancer Survivors as Advocates." :
• We need to teach doctors how to care for us with concern and passion.
• We need to teach prevention as well as teach patients to advocate for themselves.
• We need to improve communication between physician and patient. Doctors are often dismissive, callous, impatient, judgmental. The "how we tell" is as important as the "what" in talking to patients.
• Quote from Mother Theresa, "God won't give me more than I can handle; I wish he didn't trust me so much."
• Doctors don't listen to patients; on average, it's 18 seconds before they interrupt.
• "Kind words from a health care provider are more than just words; their echoes are endless."
Jim Collins, author of the best-seller "Good to Great."
• Become a hedgehog- focus on what you do well and then focus, focus, focus. Individuals should follow their passion, natural talent, and gather resources at your disposal
• We need to be ruthless and relentless. "Don't be afraid to win the fight."
• To apply his principles to a social movement or cause, the "who" is always over the "what". Get the right people on the bus. Determine who your partners are. The three stages are: 1) Disciplined people 2) Disciplined thought 3) Disciplined action
• Stockdale paradox: Prevailing over an oppressing situation or circumstance. Admiral Stockdale, highest ranked POW 1967-74 was asked how did he not lose faith during captivity and being tortured over 20 times. He said you must face the most brutal facts and reality of the situation and have absolute unwaivering faith that you will prevail. Those that were optimists saying "We'll be out by Easter, by Christmas, etc." died of a broken heart.
• Discipline begins not with what you do, but what you do NOT do. Choose the piece of the passion circle that speaks to you and whatever you choose make a gigantic contribution, get the right people involved, and have a BHAG (big, hairy, audacious goal)
• It's all about the who- life is people. He used to think it was about the what. Join with the "who's" to make a difference.
Dr. LaSalle D. Leffall, Jr., head of the President's Cancer Panel
• In order to come to the conference, he saw patients on Thursday starting at 3:30 in the MORNING!! Talk about dedicated!
• Quality of life is important for survivors, it's not how long but how they live. He wanted people to, "die young - as late in life as possible!"
• Prevention key. "Research is the creation of new knowledge and the expansion of old."
• HC providers should give patients the"grace notes" , as in music, that make a song particularly beautiful by showing genuine concern for them.
• Importance of hope, calling it the "joy of anticipation," and then challenged the delegates to be genuinely willing to do a little extra in the fight against cancer.
Steve Case, AOL Co-founder, founder of Revolution Health
• Vowed to devote the next 10 years to make the healthcare system more accessible. "It's a broken system that equates to one-sixth of our economy where patients still feel disenfranchised," he said. "We need to devise a personal system versus the one-size-fits-all version that we have now."
Harold Freeman, Medical Director of the Ralph Lauren Cancer Center (CNN Town Hall Meeting)
• Close the gap between what we know and applying to the masses; early detection saves lives (with cervical cancer 100%; breast 98%; colon 60%, etc.).
• We need culturally sensitive messages in language people understand.
• Cancer is a process, not an event.
John Kerry, U.S. Senator, prostate cancer survivor
• His father died of prostate cancer
• Three areas he believes need attention:
Awareness, since approximately half of all cancer is preventable through simple lifestyle changes like proper nutrition, not using tobacco products and receiving proper screenings.
Adequate healthcare, unlike the current system which he deemed, "…apartheid — separate and unequal - and unacceptable."
Unity, with more than 60 million yellow wristbands sold the Lance Armstrong Foundation truly has the opportunity to build an army in the fight against cancer. "You can take this experience, take this issue, and take it to the ballot box," he said. "You need to connect the dots. Survivorship is not a state of grace; it is a state or responsibility."
Mike Milken, Chairman of Faster Cures, noted philanthropist and prostate cancer survivor
• We need to see the world of cancer through new eyes "Doing things the same old way doesn't lead to breakthroughs." He also used the example of Elvis Presley getting a polio immunization in the 50's to demonstrate how one person can make a huge difference. "Before that photo was taken of Elvis getting that shot, there was a huge opposition to getting that immunization. Afterwards, everyone got it - and as a result polio today has essentially been eradicated.
• Important to support the professionals who are in the trenches coming up with new innovations, "building human capital" as he phrased it. He concluded his speech by saying that cancer research needs to move from being reactive to predictive and finally to preventive. "Just from a financial perspective, it's been estimated that defeating cancer would save $46.5 trillion dollars! That's 3 1/2 times the U.S. economy - to say nothing of the pain and suffering that would be eliminated, too."
• 1% reduction in cancer death= $500 billion
Elizabeth Edwards, breast cancer survivor, advocate and author of Saving Graces
• Relied on hope. "I know that hope isn't always enough, but without it we've already begun to die."
• Wasn't always a warrier with her treatment. "Killing it is killing me..."
• She received one hundred thousand cards and letters from fellow cancer survivors; the connections helped her get through it. She read many of them and was incredibly down to earth.
From the LIVESTRONG web site, the following are the unmet needs and potential solutions from the work groups:
Obstacles:
Poor Information
Working with your Health Care Team
After Effects of the Disease
Insurance / Finances
Lack of Support for the Patient
Supporting Your Family
Emotional Issues
Practical Challenges (child care, transportation, etc)
Changes Desired:
Improve Patient Navigation
Need for Support for Caregivers
Improved Communication with the Healthcare Team
Take Care of Myself
Support and Information About Financial Impacts
Potential Solutions:
Cancer survivors need:
– Access to usable and appropriate information
– More flexible and responsive insurance system
– Improved patient navigation system during and after treatment
– Increased support for survivors and family
– Timely financial support and guidance
– New standards for communication among survivors and healthcare professionals during and after treatment
– Support for practical needs during and after treatment
– Empowerment of survivors and families to advocate on their behalf
Access to usable and appropriate information
– Create a clearinghouse linking available resources
– Synthesize and organize information – Don’t create more
– Ensure Reliability of Information
– Create wider dissemination of the LIVESTRONG Notebook
– Provide information available outside of health care setting (hair salons, bodegas, libraries)
– Provide information “Starter kit” at diagnosis
– Have MDs provide diagnosis information and/or end of treatment plans
More flexible and responsive insurance system
– Expand coverage/reimbursement to cover:
– Ombudsman for your insurance issues
– Coordination and communication between MDs, patients & insurance companies
– Advocate to make insurance reform a national priority
Improved patient navigation system
– Develop standards of care
– Train professional staff on information which is culturally relevant and unique to the survivor
– Collaborate with schools (Universities), local resources, employers, insurance companies and government agencies
– Create an information packet addressing all aspects of survivorship
– Teach survivors to self-advocate
– Allow for equal access to patient navigation
– Model after systems that are already working
Increased support for survivors and family
– Involve all members of community:
– Train/educate the healthcare team on cultural competency, open dialogue
– Community outreach
Timely financial support and guidance
– Require that all costs of treatment options be presented up-front
– Develop a program/document that helps someone navigate financial issues of diagnosis and treatment
– Provide no-interest loans to cancer survivors to assist with treatment costs
– Develop a program where financial experts/planners can donate their time to cancer survivors to help manage finances
– Advocate for health insurance or healthcare for everyone
New standards for communication among patients and healthcare professionals during and after treatment
– Common information resources to standardize communication (e.g. patient records, drug interactions, guide to questions patients should ask, etc.)
– Ensure all patients receive copies of their medical records and care summaries
– Define roles of the Healthcare Team: What does a social worker do and what types of issues should you bring to your social worker?
– General health care professional training on communication with patients
– Teach medical students how to communicate effectively
Support for practical needs
– Improve access to transportation
– Provide child care services
– Develop organizations and volunteer networks to provide practical assistance (e.g., Meals on Wheels, mowing the lawn, shopping, cleaning)
– Create programs like Big Brother/Big Sister specifically for cancer patients
– Increase # of survivorship/wellness centers and programs for survivors after treatment
– Develop a website (like match.com) for cancer survivors to match with other survivors
Empowerment of survivors and families to advocate on their behalf
– Advocate for a Patients’ Bill of Rights
– Offer to personally help another cancer survivor
– Conduct a national advertising campaign to help cancer survivors advocate for themselves
– Create a “Certified Cancer Educator” program where people can be trained to help survivors navigate the system and be an advocate on survivors’ behalf