Advocacy

/Advocacy
Advocacy 2018-07-25T10:56:09+00:00

Patient and caregivers making their voices heard and lobbying on behalf of the crucial funding GIST and other rare cancers need. From left to right: Kristen and Jeannie Dennis, Erin MacBean, and Teena Petersohn.

The Life Raft Group is committed to empowering the advocacy efforts of patients, caregivers and their families. The LRG was founded on the principle that people working together could make a difference in the lives of those with GIST and very possibly, all those fighting cancer. That fight is fought on many fronts. Whether the issues are medical, financial, legal or governmental, and whether they are global, national or local issues, there are many ways to get involved and to help bring about change.

Current Advocacy Efforts

Advocacy is at the core of our mission. We continually strive to have a voice for our community. Working together with other advocacy groups we fight the fight on both local and federal levels. Keeping informed on the passage of bills, petitioning legislators and meeting with key policy makers has helped to get our message across.

The LRG A3 Insurance Committee is a group of passionate and dedicated members of the GIST community who are making a difference. This committee’s mission is to provide GIST patients and caregivers with access to resources and information regarding affordable medication and to promote advocacy efforts on their behalf.

The History of Rare 13 and GIST Awareness Day

In the summer of 2013, the LRG launched its Rare 13 campaign, highlighting the diverse faces of GIST by drawing attention to the fact that 13 people are diagnosed with GIST every day (and that’s just within the United States!). The Rare 13 campaign was so successful that the next year we decided it was time for GIST to step into the spotlight and have its own global day of recognition GIST Awareness Day.

Our 13 Promises to the GIST Community

On July 13, 2014, the world celebrated the first-ever GIST Awareness Day in an effort to bring widespread attention and education to this cancer. Our philosophy is that although GIST is rare, knowing about it doesn’t having to be. As part of GIST Awareness Day, we published our “13 Promises,” a national advocacy effort to bring the needs of GIST patients directly to top Washington, D.C. policymakers. The 13 Promises provide a rallying point for those impacted with GIST, sarcoma or any type of cancer to stand together in support and solidarity and raise awareness about GIST.

13promises

  • Fund GIST research
  • Fund sarcoma research
  • Secure a unique GIST reimbursement code
  • Encourage compassionate use programs
  • Ensure public payer coverage for medications
  • Expand clinical trial enrollment
  • Fund HCP education on sarcomas
  • Ensure adequate sick leave policies
  • Enhance social services for sarcoma patients and families
  • Protect patient job security
  • Ensure paid sick leave for caregivers
  • Encourage speedy regulation processes
  • Incentivize for continued innovation

Our Work Globally

Recognizing that GIST knows no geographic border, the Life Raft Group works as a global organization with the aim of serving the entire GIST patient population. To that end, each country has a leader in place to provide in-person support and lead advocacy efforts within the unique framework of each country’s needs.

Building off this concept, we are proud of our association with our sister organization, Alianza GIST, a coalition of national GIST patient advocacy groups representing 15 Latin American countries. Their mission focuses on four key principles:

  • To improve the knowledge of patients and physicians.
  • To increase patient access to adequate treatment and resources.
  • To support local patient support organizations, including the creation of new ones.
  • To encourage collaboration and coordination with the physician community.

How Can You Support the Efforts of the LRG

  • By becoming a state leader and working with state and local government to increase awareness
  • By holding support groups and mobilizing volunteers on key issues- co pay assistance, bill passage, etc.
  • Join the insurance committee
  • Become a volunteer and work with staff on advocacy initiatives

Contact Laura Occhiuzzi, Outreach & Engagement Senior Director – 973-837-9092 ext. 105 or email her at locchiuzzi@liferaftgroup.org

Advocacy Resources

Financial Aid
Local Support
Advocacy Group Links

Core Values

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Upcoming Events

  1. Michigan GDOL 2018

    Michigan GDOL 2018

    October 27 @ 8:00 AM - 3:00 PM
  2. NTFC

    Night to Fight Cancer

    November 7 @ 6:00 PM - 11:00 PM