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Hundreds of Blood Cancer Advocates Converge on Capitol Hill


New York — May 21, 2004

Patient and Families Gathered for Fourth Annual Blood Cancer Advocacy Days

Hundreds of patients and families affected by lymphoma or multiple myeloma, two of the most common blood cancers, joined forces to call on lawmakers to increase research funding for blood cancer, and to speed-up the development of new blood cancer treatments. Over 700,000 Americans are affected by blood cancer. Each year, approximately 110,000 Americans are diagnosed and another 60,000 will die from these diseases. Taken as a whole, the blood-related cancers are the 5th most common cancer, behind lung, breast, prostate, and colorectal cancer.

Blood Cancer Advocacy Days were held May 18th and 19th in Washington, DC, and consisted of advocacy training for patients, families, and friends affected by these diseases, meetings with Members of Congress and their staffs, and a Congressional Luncheon Briefing featuring Elias Zerhouni, MD, Director, National Institutes of Health; Thomas Kipps, MD, PhD, Professor and Head, Hematology/Oncology, Oncology Division, University of California, San Diego; Kenneth Anderson, M.D., Kraft Family Professor of Medicine, Hematologic Malignancies Disease Center, Dana-Farber Institute. The two organizations spearheading the efforts for Blood Cancer Advocacy Days were the Lymphoma Research Foundation and the Multiple Myeloma Research Foundation.

"Investing federal funds in blood cancer research will not only benefit patients affected by this type of cancer, but millions of Americans suffering from all cancers," said Dr. Thomas Kipps, speaking on behalf of the Lymphoma Research Foundation. "It's time to make a greater investment at the national level to move the research forward so that curative treatment strategies for blood cancers can be achieved," he added.

This year, the advocates asked Members of Congress to support the implementation of the Medicare demonstration program for coverage of oral cancer therapies; encourage the National Cancer Institute to develop innovative approaches to funding blood cancer research; and initiate a $16 million blood cancer research program at the Department of Defense.

"The number-one priority on the Blood Cancer Coalition's policy agenda is to strongly urge the NIH to support novel, collaborative research efforts in blood cancers which will remove the barriers to translational and clinical research," said Kathy Giusti, President of the Multiple Myeloma Research Foundation. "Cooperation among researchers, pharmaceutical companies, and the NIH is critical to accelerating the drug development process and eventually to finding a cure for orphan blood cancers like multiple myeloma," added Giusti.

Lymphoma is the most common blood cancer-it affects nearly 500,000 Americans. There are more than 30 subtypes of lymphoma, consisting of 5 types of Hodgkin's lymphoma (also known as Hodgkin's disease) and over 25 types of non-Hodgkin's lymphoma. Non-Hodgkin's lymphoma (NHL) is the most common cancer of the lymphatic system. Since the early 1970's, incidence rates for non-Hodgkin's lymphoma have nearly doubled. The overall five-year survival rate is only 56%. Hodgkin's lymphoma (HL) is a less common form of lymphoma. Researchers know it is a cancer which arises from an abnormal lymphocyte (white blood cell). The overall five-year survival rate is 84%. Hodgkin's lymphoma occurs mainly in young adults, with a peak occurrence between ages 16 and 34. Older patients, especially those over age 55, may also develop HL.

Multiple myeloma, a cancer of the plasma cell, is an incurable but treatable disease. While a myeloma diagnosis can be overwhelming, it is important to remember that there are several promising, new therapies that are helping patients live longer, healthier lives. There are approximately 50,000 people in the United States living with multiple myeloma. Each year, an estimated 15,270 new cases of multiple myeloma are diagnosed and another 11,070 people die from the disease. Multiple myeloma is the second most prevalent blood cancer after non-Hodgkin's lymphoma. It represents approximately 1% of all cancers and 2% of all cancer deaths.

"Many of the common therapies used to treat cancer patients today came as a result of blood cancer research, such as chemotherapy agents used to treat solid tumors, the concepts of cancer staging to define disease severity and target appropriate therapy, the strategy of combining chemotherapy with radiation therapy, and the use of monoclonal antibodies and biologic response modifiers. We have a watershed of new information on cancer biology and genetics that can be used to develop targeted therapy for patients with blood cancers and ultimately for patients with cancer in general," added Dr. Kipps.

The mission of the Lymphoma Research Foundation (LRF) is to eradicate lymphoma and serve those touched by the disease. The Foundation is the nation's largest lymphoma-focused voluntary health organization devoted exclusively to funding lymphoma research and providing patients and healthcare professionals with critical information on the disease. To date, LRF has funded more than $18 million in lymphoma research. 90 cents of every dollar raised goes to research and education programming. People affected by lymphoma can receive free personalized information tailored to their diagnosis, help with finding a clinical trial, and easy-to-understand information on lymphoma, current treatments, and promising research. Please call 800-500-9976, email helpline@lymphoma.org, or visit the website www.lymphoma.org.

The Multiple Myeloma Research Foundation (MMRF) was founded in 1998 by twin sisters Karen Andrews and Kathy Giusti with the mission of accelerating the search for a cure for multiple myeloma. Today, the MMRF is the number-one private funder of myeloma-specific research, raising more than $50 million to fund 49 institutions worldwide. The MMRF is the world's only non-profit organization to have earned a four-star rating from Charity Navigator, approval by the Better Business Bureau's Wise Giving Alliance Standards for Charity Accountability, and approval by the National Cancer Institute for its grants-making process. To learn more about MMRF, visit www.themmrf.org.

For information, contact:
Anne Quinn Young, MMRF, 203-652-0212, quinnyoung@www.themmrf.org

Media contact:
Rosalind D'Eugenio, Environics Communications, 203-325-8772, rdeugenio@environics-usa.com