Advocating for your Rights
Placebos | Compassionate-Use | Advocacy Resources |Get Involved
The Life Raft Group 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.
The Life Raft Group has voiced its opinion on the use of placebos in clinical trials for terminally ill patients a number of times in its newsletter and the media. We believe placebos are an unethical approach to clinical trial design. Here is a list of LRG newsletter articles and outside resources to keep yourself better informed about placebo use.
Placebo: Wrong then, wrong now-August 2008
More placebo clinical trials predicted for cancer patients-August 2006
National Placebo Inititative Final Report, CIHR-July 2004
Placebo use in Pfizer trial simply wrong-January 2004
COMPASSIONATE-USE OF DRUG TREATMENTS
Compassionate-use process is not so compassionate-November 2007
The Right to a Trial: Should dying patients have access to experimental drugs?
Abigail case denied: Court rules against patients' right to choose-April 2008
How long must dying patients wait for justice?-September 2008
Medicare: What many GISTers need to know-May 2008
What is the Medicare lottery?-July 2004
There are also many resources to help you stay informed about the key health issues facing Americans today.
Health08.org Throughout the election season the Kaiser Family Foundation will provide analysis of health care issues addressed by the presidential candidates.
Health Action 2008 Tool Kit Every year, Families USA sponsors a national conference—a gathering of grassroots health care advocates from across the country. These Health Action conferences offer a chance for the community of health care advocates to come together, share ideas, and prepare for the year ahead. As part of the preparations for this national meeting, Families USA assembles a large binder of materials covering a range of health care issues—Medicaid, children's health, Medicare, increased health coverage for the uninsured, minority health, global health—and useful advocacy tools (media tips, useful Web addresses, and so forth). These materials come from numerous sources, including Families USA, other national and state organizations, and government agencies. The binder is given to everyone who participates in the Health Action conference.
Health Coverage Coalition for the Uninsured A plan for universal coverage from a diverse coalition of 16 leading national health care organizations
Mayo Clinic Health Care Reform Recommendations Over the last two years, Mayo Clinic Health PolicyCenter has convened more than 400 national leaders for a series of events to help develop new, consensus-driven principles to guide the reform process. This report summarizes these activities to date.
Presidentialrx.com The Health Care Solutions Group has launched a web site to provide voters with information on the health care proposals of the 2008 presidential candidates, with a focus on how the health care proposals of the candidates will affect individuals, families, and employers across the country. The site summarizes the health care plans of the candidates, describes what they mean in user-friendly terminology, and includes additional resources and links to news items to allow voters to follow the candidates and theirhealth care views throughout the campaign.
Survey Examines American Views of Socialized Medicine This survey is part of a series Debating Health: Election 2008 conducted by the Harvard Medical School.
Washington Post.com's Presidential Campaign Tracker Uses information from campaigns, media reports and other sources to compile a list of events involving presidential candidates. Other Ideas in Health Care: Universal Coverage's Mavericks A remarkable thing is happening in the national health-care debate--the biggest bipartisan group of senators ever to sponsor a measure for universal coverage.
WebMD Election Coverage Information about where candidates stand on healthcare issues and what’s happening on the campaign trail.
Advocacy Organizations:
Access to Medical Imaging Coalition (AMIC)- The coalition was organized in 2006, soon after Congress passed the Deficit Reduction Act of 2005, which significantly reduced the level of funding for medical imaging services provided in independent imaging facilities and physician offices. AMIC represents more than 75,000 patients, physicians, and medical providers throughout the U.S. The coalition conducts public affairs, advocacy, and educational activities to address these payment reductions.
American Cancer Society Action Network 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.
American Health Information Community (AHIC) - A federally-chartered advisory committee formed to help advance efforts to reach President Bush's call for most Americans to have electronic health records within ten years. Provides input and recommendations to the Department of Health and Human Services on how to make health records digital and interoperable, and assures that the privacy and security of those records are protected (two year appointment).
Cancer Leadership Council (CLC) - 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.
The Center for Medicare Advocacy, Inc. is a private, non-profit organization which provides education, advocacy, and legal assistance to help elders and people with disabilities obtain necessary healthcare. The organization is involved in education, training and litigation activities of importance to Medicare beneficiaries nationwide. Their extensive website has answers to many basic questions about Medicare programs and services. Advice, written materials, and legal services are free to Connecticut residents and for a fee to others.
Stay in touch with Medicare and health care information and Sign up for The Center for Medicare Advocacy’s free Weekly Alert.
Director's Consumer Liaison Group (DCLG) Members are involved in cancer advocacy and represent a constituency with which they communicate on a regular basis. The group advises, assists, consults with, and makes recommendations to the Director, National Cancer Institute, from the perspective and viewpoint of cancer consumer advocates.
Everypatientsadvocate.com Trisha Torrey is the patient empowerment advocate for About.com. Her website has information for patients, by a former patient, from a patient's point of view.... to help patients become good healthcare consumers by providing them with the tools they need to do so. As a part of the DiagKNOWsis family of websites, Every Patient's Advocate provides columns and podcasts which can be shared through publication in consumer-read newspapers, magazines, e-zines or through audio media.
Health IT Now! Coalition - Established in June 2007 to promote the rapid deployment of health information 
technology (Health IT), the Coalition unites patients, practitioners and employers. Former Representative Nancy Johnson and former Senator John Breaux are co-chairs of the Coalition which supports federal legislation to promote a connected Health IT system.
National Cancer Institute’s Office of Advocacy Relations 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 translates the experience of millions of patients who have been helped by our companion, Patient Advocate Foundation, which provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost. You can make a big difference in just 5 minutes. That's all it will take to learn the issues and send an e-mail to your legislators. The actions of our government have an enormous impact so please educate yourself and take action.
Join the NPAF Advocates Network! 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. The IX Patient Congress was held on June 25-26, 2008.
Urge Congress to Provide Coverage for Cancer Clinical Trials
There are 10 million Americans living with cancer and another 1.5 million more who will be diagnosed with cancer this year. As the opportunities to enroll in clinical trials decrease due to funding cuts, coverage for participation in clinical trials and coverage for routine costs associated with clinical trials is necessary in order to make scientific advances. The "Access to Cancer Clinical Trials Act of 2007" (HR 2676)ensures that patients enrolled in group and individual health insurance will have coverage for approved cancer clinical trials including coverage for routine patient costs associated with clinical trials.
Urge Congress to Pass Health IT Legislation
The NPAF supports the rapid deployment of health information technology (IT) and wishes to ensure that patient concerns are considered in development of health IT policy, standards and innovations. Working with the Health IT Now!
