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Jan

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  1. HOPE is the theme of the fifth Lung Cancer Awareness Month (LCAM). ALCASE's poster, which will reach thousands of medical centers, celebrates Hope and makes the point that "No one deserves lung cancer." As in previous years, we’re sending thousands of educational kits nationwide and including lung cancer facts and advocacy tips to encourage wider public involvement. There is hope for people facing lung cancer—whether you have the disease or are helping someone who does. On the personal level, hope grows when you have some control over decisions about your medical care, such as discussing all your treatment options and how best to feel as good as possible during and after treatment. More people with lung cancer are finding useful information, through websites and print materials from ALCASE and other cancer groups, to bring to physician visits. Finding personal support through in-person groups or with a Phone Buddy can provide comfort and connection. Living as if the disease is only part of your life and finding meaning in each moment is another way to nurture hope. As our continuing tracking of medical research shows, there is progress in answering some challenging medical questions, too. There are screening studies and others testing the effectiveness and side effects of experimental drugs. Some of the agents are so-called "targeted therapies" that work differently than current chemotherapies. There are more funding sources for investigators, too. In recent years, several national foundations have formed and their awards will help boost the relatively low level of federal research dollars the NCI offers. ALCASE staff will speak at lung cancer seminars around the country, at Vanderbilt-Ingram Cancer Center in Nashville, the University of Pittsburgh Cancer Center, Loyola University, and the Virginia Hospital Medical Center in Arlington. Vanderbilt and Pittsburgh are home to two of the seven Lung Cancer Special Programs of Research Excellence (SPOREs) funded by the National Cancer Institute. Key volunteers are distributing thousands of our brochures to hospitals and clinics that may not yet know of our programs. Others plan to contact local media and get in touch with their state and federal legislators about lung cancer issues. See www.congress.org for quick ways to contact your elected representatives, health agencies, and the media. Legislatively, lung cancer is beginning to get the attention of more members of Congress. Our representative in Washington, D.C. is working with congressional staffers on several initiatives. One directs the National Cancer Institute to report on how it will implement recommendations of its Lung Cancer Progress Review Group. Another calls for a lung cancer-screening program for veterans of the armed services (many of whom became addicted to cigarettes the military distributed free). A third encourages development of approaches to protect high-risk people from developing lung cancer. Hopeful initiatives such as these need your dedicated involvement. Other organizations are also active during Lung Cancer Awareness Month. Medical centers feature informational displays and workshops. Lung cancer survivors, their family and friends organize local events that help create more public awareness of lung cancer and compassion for poeple facing the disease. Hope and progress result from these actions, too. Let us know what you're doing and we'll add it to our LCAM section at www.alcase.org details.
  2. Sent 5/14/03-- Dear President Bush, On behalf of lung cancer patients and survivors , and their caregivers, we thank your administration for approving the drug, Iressa, which is the first breakthrough in treating advanced lung cancer. We appreciate the efforts of Mark McClellan,MD the Director of the Food and Drug Administration and Richard Pazdur, MD, the Director of Oncologic Drugs who enabled this approval to take place. As the only truly novel new drug for advanced lung cancer patients, many of whom are former members of the Armed Services, we urge your administration to include this drug under Medicare coverage. A word from you, Mr. President, could make this happen immediately. Time is of the essence since someone in the United States dies of lung cancer every three minutes. Although lung cancer causes over 30% of all cancer deaths year after year, more than the combined total of breast, prostate and colon cancers, it has received only token amounts of funding and attention from the federal government and the NCI. The lung cancer mortality rate of 85% has remained virtually unchanged since the passage of the Cancer Act of 1971. We understand that Andrew Von Eschenbach, MD, the Director of the National Cancer Institute, intends to focus on lung cancer in his initiative to end the death and suffering from cancer by 2015, and that he and Dr. McClellan are developing a new dynamic relationship between FDA and NCI to further expedite the achievement of that goal. We applaud this turn of events and assure you, Mr. President, and Dr. Von Eschenbach and Dr.McClellan, that we are fully committed to assisting in every way we can. Thanks for the details of your last wk, and it all continues... We're getting Board approval to send the Bush ltr--revised version below. Might it not be a good idea to wait and see what the NCI-FDA announcement is at ASCO before writing the notes ot Pazdur and von E? When's the NCI/Dana-Farber announcing the SPORE? Dear President Bush, On behalf of lung cancer survivors and their families, we thank your administration for approving the drug Iressa for treating advanced lung cancer. Iressa is one of very few drugs for advanced lung cancer patients whose previous treatments are no longer effective. We appreciate the efforts of Mark McClellan, M.D. the director of the Food and Drug Administration and Richard Pazdur, M.D., the director of oncologic drugs, and the careful review of evidence F.D.A. brought to this process. Many Americans diagnosed with lung cancer are Medicare recipients (and many are veterans of the Armed Services). Yet Iressa, a pill, is not covered as an oral cancer drug. We urge your administration to include this drug under Medicare coverage-a word from you, Mr. President, could make this happen immediately. Time is of the essence, since lung cancer kills another American every three minutes. Although lung cancer causes over 30% of all cancer deaths year after year, more than the combined total of breast, prostate and colorectal cancers, it has received only token amounts of federal research funding and attention. Its mortality rate of 85% has remained virtually unchanged since the passage of the Cancer Act of 1971. The Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE) is the only national no-for-profit patient advocacy group solely serving people with lung cancer. We understand that Andrew Von Eschenbach, M.D., the Director of the National Cancer Institute, intends to focus on lung cancer in his initiative to end the death and suffering from cancer by 2015, and that he and Dr. McClellan are developing a new dynamic relationship between FDA and NCI to further expedite the achievement of that goal. We applaud this turn of events and assure you, Mr. President, and Dr. Von Eschenbach and Dr. McClellan that we are fully committed to assisting in every way we can. Sincerely, Randolph Urmston President, ALCASE Board of Directors J. Steven Hart Member, ALCASE Board of Directors
  3. Jan

    New from ALCASE

    Dear All-- Here is ALCASE's press release about today's aproval of Iressa. The FDA approval is posted at http://www.fda.gov/bbs/topics/NEWS/2003/NEW00901.html Vancouver, WA, May 5, 2003 - The Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE) applauds the U. S. Food and Drug Administration's (FDA) approval of Iressa® (gefitinib), for treating people with advanced non-small cell lung cancer whose disease has progressed after chemotherapy. ALCASE Executive Director, James Asher said, "We respect the rigorous review FDA has given Iressa and know that continuing research will help determine more precisely which patients might benefit from Iressa and for how long. Treatment advances for people with advanced lung cancer have been few and far between, and Iressa offers real hope." About171, 900 people will be diagnosed with lung cancer this year and about 138,000 will have non-small cell lung cancer. In most of those, the disease, which has no federally recommended screening method, has already spread beyond the lung. "Our position," said Mr. Asher, "has been that the possible benefits of taking Iressa far outweigh the risks. We are glad the FDA reached a similar conclusion. We are following with interest further studies with this and other new drugs designed to target cancer cells and which cause fewer side effects than current chemotherapies." ALCASE is the only national organization solely dedicated to helping people who have lung cancer. Services include a tollfree information Hotline (800-298-2436) and website (www.alcase.org) and personal support programs for people with lung cancer and their families. ALCASE is based in Vancouver, Washington, with representation in Washington, DC. Mr. Asher, a lung cancer survivor, and former treasurer of the ALCASE Board of Directors, lives in New York City. --
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