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.
Whether it be our fight to ban the use of placebos in clinical trials for terminally ill patients, compassionate use of drug treatments or our boundary-breaking work on the introduction of generics into the market, as the landscape of medicine and how patients access treatment changes, it is clear that the patient’s voice is more important than ever.
Current Advocacy Efforts
Patients shall be held harmless
There has been discussion in the news recently concerning charitable giving patient assistance programs that aid Medicare and Medicaid patients with premium assistance. New federal regulatory guidance seeks to prohibit charitable organizations from helping patients to pay for these essential treatments.
The Life Raft Group is committed to the premise that patients shall be held harmless from the infighting between government, pharmaceutical and private agencies. We are against any legislation that makes it more difficult for a cancer patient to receive life saving treatement.
To this end, the LRG lends support to the Access to Marketplace Insurance Act, H.R. 3742, legislation that would override the CMS guidance on third-party payments and require health insurance companies to accept payments from non-profit organizations that operate in compliance with the False Claims Act.
The Life Raft Group has joined the Marketplace Access Project, a patient advocacy movement dedicated to protecting non-profit insurance premium assistance for individuals suffering from chronic and life-threatening illnesses.
For more information on H.R. 3742 and how you can support it: http://www.marketplaceaccess.org/#marketplace-access-project
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.
- 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.
ACS CAN, the non-profit, non-partisan sister advocacy organization of the American Cancer Society, is holding lawmakers accountable for their words and their actions. They demand that our leaders not only talk about fighting cancer but take real steps toward decreasing the number of people suffering and dying from cancer.
Formed in 1993 to voice the concerns of cancer survivors during the health care reform debate. The CLC is engaged in a wide range of issues, but they all relate to a fundamental goal of ensuring cancer patients access to high quality care. More than thirty-three groups, including cancer patient organizations, professional societies, and research organizations, have joined the CLC and help set the agenda and develop positions which represent the consensus of the groups.
Established in June 2007, Health IT Now is a broad based coalition of patient groups, provider organizations, employers and payers that supports incentives to deploy heath information technology to improve quality, outcomes, and patient safety and to lower costs.
OAR acts as a portal for cancer-related advocacy groups, helping them navigate the National Cancer Institute and the National Institutes of Health to gain information and achieve their organizations’ goals. The advocacy outreach program keeps advocates informed through a bi-weekly electronic newsletter, e-mails regarding late-breaking cancer news and hot topic issues of importance to the community, and teleconferences featuring information and topics of importance to advocates.
The National Patient Advocate Foundation is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels. NPAF’s Advocates Network keeps volunteer advocates informed of current state and federal initiatives that affect the healthcare of Americans. By knowing the key points, you will be able to effectively bring your voice to legislators who sit in a position to make that difference happen. You can also see what’s happening in your state. NPAF holds an annual Patient Congress in Washington, D.C. Participants come together to advocate on behalf of important health-related issues and meet with local Congressmen and Senators.
(OVAC) is a collaboration of national non-profit organizations representing millions of Americans, delivering a unified message to Congress and the White House on the need for increased cancer-related appropriations.
PSI Government Relations advocates for greater access to affordable health care and treatments for patients with rare, chronic conditions. Working on both the state and federal level, the department combines expertise in legislative and regulatory affairs with a passion for advocacy ensuring our patients’ voices are heard.