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Federal Document Clearing House Congressional Testimony

March 8, 2000, Wednesday


LENGTH: 3200 words


Statement of Vincent Hereford Hampton, Virginia For The Leukemia & Lymphoma Society Before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies March 8, 2000 Chairman Porter and Members of the Subcommittee, I am Vincent Hereford of Hampton, Virginia. I was diagnosed with chronic myelogenous leukemia, or CML, in 1991, and have been participating in a clinical trial at M.D. Anderson Cancer Center in Houston, Texas. The medication I am receiving (CGP 5714813) is similar to the publicized STI-571 in that it targets leukemia cells only and leaves healthy cells intact. Participating in this treatment protocol has been instrumental in maintaining a normal life for my family since I have been diagnosed with this disease. As a husband, the father of two young children, and a CML survivor, it has been a struggle to maintain work and family life and organize treatment for myself. I am currently employed as a Radiological Control Instructor at Newport News Shipbuilding and Dry Dock Company in Newport News, Virginia. In addition, I serve in the Army Reserves as Reenlistment NCO. I have been very fortunate to have employers who have accommodated my needs; however, not all cancer survivors have this luxury. As a participant in a clinical trial, I have been denied medical coverage through my private insurance company on a regular basis. In order to obtain just basic medical care, which insures my survival, I have had to advocate for myself on almost a daily basis. These expenses include room and board, nursing services, administration costs and travel to the treatment facilities. As many of these expenses are not covered, patients such as myself have had to incur debt to maintain daily living while receiving treatment. So, in addition to worrying about survival and taking care of immediate needs, patients must also consider future financial implications. Finances should not be a prime concern, getting well should. The Leukemia & Lymphoma Society I am very pleased to represent The Leukemia & Lymphoma Society before the Subcommittee. I have represented the Society on a local level as a public speaker, a peer volunteer, an honored patient, and an advocate. I have also been a beneficiary of financial assistance through the Society, which pays for costs insurance will not cover. On behalf of The Leukemia & Lymphoma Society, I would like to offer my heartfelt thanks to you for your leadership in securing substantial increases in funding for the National Institutes of Health (NIH). The increases of 1 5 percent that have been approved for fiscal years 1 999 and 2000 are critical to our goal of doubling the NIH budget by fiscal year 2003. For cancer survivors like me, your commitment to biomedical research is of utmost importance. The research funded by NIH yields information that may result in improved therapies for diseases like CIVIL. Patients like me are the beneficiaries of your work, and we thank you for your dedication to our cause. This is the first time The Leukemia & Lymphorna Society has testified before the Subcommittee. This organization has been dedicated to the fight against blood-related cancers for 51 years, but we previously called ourselves the Leukemia Society of America. We testified before you with that name. On February 1, 2000, we changed our name to The Leukemia & Lymphoma Society and gave greater prominence to our mission by including the tag line, "Fighting Blood-Related Cancers." The Problem of Blood-Related Cancers When National Cancer Institute Director Richard Klausner testified before this Subcommittee in February, he noted the reductions in mortality from many cancers and also the fact that the mortality rates from liver cancer and non- Hodgkin's lymphoma are still increasing. Our name change signifies our dedication to reduce the mortality rate for lymphorna. The problem of blood-related cancers remains very serious. About 650,000 Americans are living with leukemia, lymphoma, and myelorna, and there will be 60,000 deaths from these diseases this year. Although we have experienced impressive progress in the fight against childhood leukemia -- a 57 percent decline in the death rate over the last three decades -- childhood leukemia represents only about five percent of those with blood-related cancers. The rates of remission from blood-related cancers are improving and adults with these diseases are living longer lives, but the cure rates remain too low. Clearly, there is much work to be done. The Grant Programs and Patient Services Program of the U.S. As a voluntary health agency, The Leukemia & Lymphorna Society raises funds to support research on blood-related cancers. Our grants fall into three broad categories: Career Development Grants; Translational Research Grants for early-stage support for clinical research; and Specialized Centers of Research. In our Career Development program, we fund Scholars, Special Fellows, and Fellows who are pursuing careers in basic or clinical research. In our Translational Research Program, we focus on supporting investigators whose objective is to translate basic research discoveries into new therapies for patients. The Society is very proud that the groundbreaking work of Dr. Brian Druker, an oncologist at Oregon Health Sciences University and the chief investigator on a study of a very promising new treatment for CIVIL -- called STI-571 -- has been supported by a translational research grant from the Society. Through the Career Development and Translational Research Programs, we are currently supporting more than 400 investigators in 33 states and ten foreign countries. Our new Specialized Centers of Research grant program (SCORE) is intended to bring together research teams focused on the discovery of innovative approaches to benefit patients or those at risk of developing leukemia, lymphoma, or myeloma. The awards will go to those groups that can demonstrate that their close interaction will create research synergy and accelerate our search for new therapies, prevention, or cures. Since the Society first began making grants, we have awarded $1 75 million in grants. We are now awarding $23.5 million annually. The Society also supports a strong Patient Services program which provides individuals with blood-related cancers and their families important financial support, counseling, support groups, and other services, which I previously mentioned. The Successes and Challenges of Research on Blood-Related Cancers The history of research on and treatment of blood cancers includes some very encouraging experiences and offers important lessons about the cancer research effort. As you probably know, improvements in the treatment of childhood leukemia have been impressive and have been accompanied by reductions in mortality. The leukemia death rate for children in the U.S. has declined 57 percent over the last three decades. How have we made these impressive strides? We have invested in basic research to aid our understanding of childhood leukemia and to provide insights into the best treatments for these diseases. The Leukemia & Lymphoma Society is proud that we have supported many leaders in research on leukemia, lymphoma, and myeloma, and financed many important research initiatives. This country has also developed an unparalleled clinical trials system for children and has enrolled the majority of children with cancer in clinical studies. This effort has ensured that children get the very best care, has steadily moved basic research findings from the bench to the bedside, and has accelerated the quest for answers about the optimal treatment of children with cancer. Our work is not complete. Among all diseases, leukemia is still the number one killer of children under age 1 5 and affects ten times as many adults as children. Approximately 550 children died from leukemia in 1 999. The effort to improve treatment of childhood cancers must continue. At the same time, we must replicate the pediatric cancer research and clinical trials system in a system for adults. Currently, only about 2-3% of adult cancer patients participate in clinical trials, whereas the majority of children do. Unless we can increase the rate of adult participation in appropriate clinical trials, we will not be able to hasten progress in the fight against cancer. To accomplish real progress against all blood cancers, The Leukemia & Lymphoma Society recommends the following initiatives: - Increase funding for the National Institutes of Health (NIH) by 15 percent in fiscal year 2001. This level of funding sustains the progress toward doubling the NIH budget by 2003. We believe this is a time of great opportunity in biomedical research. Molecular biology is answering fundamental questions about human disease, and we need to sustain our investment in basic research as well as fund translational and clinical research to translate basic research findings into better therapies for disease. - Honor the recommendations of the National Cancer Institute (NCI) Bypass Budget. Under the provisions of the National Cancer Act, the NCI Director is allowed to submit his budget directly to Congress. The Bypass Budget recommends a responsible level of funding that would foster progress in cancer research. The Leukemia & Lymphoma Society would also like to express its appreciation to NCI for its decision to convene a Progress Review Group on lymphoma, leukemia, and myeloma. This is critical time for the Institute to turn its attention to the research portfolio for leukemia and lymphoma. As we have previously noted, treatment of lymphoma still presents a serious challenge, and an evaluation of ongoing research efforts will provide benefits to researchers and patients. - Ensure Medicare and Private Insurance Coverage for Clinical Trials Both Medicare and private insurance plans should be required to pay for the routine patient care costs for cancer patients who enroll in clinical trials. If a patient and his or her physician determine that enrolling in a clinical trial is the best treatment option, that patient should not face fears that his or her routine patient care expenses will be denied. However, such denials are a possibility in Medicare and many private insurance plans. Although most patients who enroll in trials ultimately secure coverage for clinical trials, some do not and many more are discouraged from enrolling in clinical studies because of concerns that reimbursement will be denied. Both the House and Senate versions of the Patients' Bill of Rights contain provisions mandating coverage of clinical trials, although the reach of these bills is different, and the Medicare Cancer Clinical Trials Coverage Act would require coverage in the Medicare program. We understand that these bills are not in the jurisdiction of this Subcommittee, but we urge your support of them. A properly functioning clinical trials system is critical to the translation of basic research findings into improved therapies, and clinical trials coverage is therefore an important complement to NIH funding. This is a very exciting time for biomedical researchers and a time of great hope for patients with serious diseases. Science is answering important questions about human diseases, and we must do everything we can to facilitate and foster this work. Your role in this effort has been critical. We urge you to continue your support for NIH and other initiatives that improve the quality of life and health of those with serious illnesses. It is a pleasure to appear before the Subcommittee today. On behalf of The Leukemia & Lymphoma Society, I thank you for your time and attention.

LOAD-DATE: March 15, 2000, Wednesday

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