My MD, My PC

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US patient advocacy andpartnership successes
Margaret C. Kirk Y-ME National Breast Cancer
Organization, USA
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U. S. Patient Advocacy and Partnership Successes

• Margaret C. Kirk Chief Executive OfficerY-ME
  National Breast Cancer Organization

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Mission

• To ensure, through information, empowerment and
  peer support, that no one faces breast cancer
  alone.

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Breast Cancer27 years ago

• Lack of information
• Never spoken of publicly
• No breast cancer awareness campaigns
• No one to talk to share experiences ask
  questions

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Y-ME is founded, 1978

• Mimi Kaplan Ann Marcou

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Y-MEs beginnings

• These two breast cancer patients decide to form
  a support groupliterally at the kitchen table
• Momentum increases
• Mimi and Ann start to take phone calls from
  home
• Phone calls increase
• Need for emotional support grows

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Y-ME National Breast Cancer Organization

• Survivors helping survivors
• Why Me becomes Y-ME
• 11 affiliates across the country
• Where to turn when your world
• turns upside down
• Ribbon inverted to distinguish
• from other organizations

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2005 US Breast Cancer Statistics

• 212,000 women will be diagnosed with new cases of
  breast cancer
• 1,200 men will be diagnosed
• More than 40,000 men and women will die
• Second leading cause of cancer death after lung
  cancer
• 1 in 7 women at risk of developing breast cancer
• Majority of women who develop breast cancer have
  no family history
• American Cancer Society

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Y-ME National Breast Cancer Hotline

• Only hotline in the US staffed entirely by
  trained peer counselors who are also breast
  cancer survivors
• Opportunity for anyone touched by breast cancer
  to talk one-on-one with someone who really
  understands
• Confidential, free-of-charge, 24/7 multilingual
  call center
• Dedicated Spanish line interpreters in 150
  languages

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Y-ME National Breast Cancer Hotline

• Y-ME Counselors do not give medical advice
• Empower patients with information
• Promote good communication with health care
  providers
• Encourage patients to be most important player
  on their health care teams

Y-ME does not endorse any products or treatments
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Y-ME National Breast Cancer Hotline

• Most calls come at time of diagnosis
• Replace fear with facts
• Provide hope
• Provide objective information and resources
• Match callers with someone whos had a similar
  experience with breast cancer
• Calls from partners, care givers, loved ones
• Y-ME receives more than 40,000 calls per year

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Y-ME Individual and Hotline Support Center Web
sites

• Password protected
• Specific to individual needs

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Y-ME National Breast Cancer Public Web site

• Information for patients and loved ones
• Communication with Peer Counselors
• Publications
• Affiliate sites

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Y-ME Programs Services

• Web site
• Monthly e-mail Newsletter Peer to Peer
• Publications
• Lifeline Latina News
• Wig Prosthesis Bank
• ShareRing Network
• Teen Program
• Education Outreach
• A Day for You Friends of Ann Mimi
• Advocacy
• Match Program

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Y-ME Affiliate Network

• 11 affiliates and expanding
• Open Door Support Groups
• Events
• Newsletters
• Advocacy
• Wig Prosthesis banks
• Community outreach, education
• A Day For You

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National Exposure

• Public Service Announcement
• Distributed to all television stations in the
  cities where Y-ME has Affiliates, some additional
  strategic markets like New York, Miami and
  Seattle, and several cable outlets including
• CNN, Comedy Central, Oxygen TV, Bravo, Discovery
  Channel and WE Women's Entertainment.
• Primary Goal Let people know we're there for
  them, and for others to become familiar with Y-ME
  and keep us in mind if they or someone they love
  ever needs us.

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Partnership Examples

• Support from Roche and from Sanofi-Aventis
  enabled us to expand and enhance our 24 hour
  Hotline
• Support from AstraZeneca allowed us to expand our
  Wig and Prosthesis Bank

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Partnership examples

• Partnership with Pharmacia enabled Y-ME to begin
  to build new affiliates around the country
• Partnership with GlaxoSmithKline enabled Y-ME to
  reach out with a Clinical Trials education
  initiative

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Cause-Related Example

• Walgreens
• 4800 Walgreens locations
• Late September-October
• Y-ME receives 25 of the purchase price of a
  variety of items

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Successes

• Only national 24/7 breast cancer hotline staffed
  by survivors
• Grew from grass roots group to a premier national
  breast cancer organization
• Consistently collaborative
• Founding member National Breast Cancer Coalition
  (NBCC)
• Founding member Cancer Leadership Council (CLC)
• Early commitment to underserved populations
• Spanish hotline, publications, Web site
• Multi-lingual hotline
• Outreach programs
• Strengthening affiliates
• Advances in technology to do what we do best
  inform, empower and support

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Challenges

• Keeping up with research and treatment protocols
• Keeping up with technology
• Maintaining commitment to personal high touch
  service in high tech age
• Remain objective while interpreting information
  for lay public
• Reaching people who need us at the right time
• Still dont have a cure
• Two greatest risk factors being female and
  growing older

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Mission

• To ensure, through information, empowerment and
  peer support, that no one faces breast cancer
  alone.

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