What CDC Is Doing About Hematologic Cancers

The Centers for Disease Control and Prevention (CDC) funds efforts to raise awareness about hematologic cancers (leukemia, lymphoma, and myeloma) to improve survivors' quality of life. These efforts offer health care providers the latest information about how to recognize the signs and symptoms of hematologic cancers and how to treat these diseases. They also connect the public, people living with hematologic cancers, and their friends and families with resources for understanding the diseases better; asking the right questions about diagnosis, treatment, and survivorship; receiving optimal treatment; and finding community support networks.

Funded Partners

CDC funds efforts to improve the awareness, diagnosis, understanding, and treatment of hematologic cancers. The following nine organizations have received funding to increase awareness of and education about hematologic cancers.

• The Education Network to Advance Cancer Clinical Trials (ENACCT) and the Cancer Support Community (CSC) are conducting a pilot project called Open to Options, which features a treatment decision support program for patients and a training program for health care providers and researchers to improve patients' access to quality care. Open to Options helps cancer patients speak more openly with their families, helps primary care providers educate patients about clinical trials as a first-line treatment option, and helps clinical research staff improve recruitment, consent, and accrual procedures.
• The Leukemia & Lymphoma Society (LLS) addresses disparities in patient access, and cultural gaps for Hispanic and other underrepresented blood cancer patients, by training oncology nurses, offering cultural competency training, and supporting collaborations between local LLS chapters and community organizations. The LLS Information Resource Center offers scheduled follow-up calls to targeted populations of patients and caregivers to provide ongoing support and enhance their decision-making skills. The LLS also presents programs at the Oncology Nursing Society's annual congress. The 2011 program will focus on barriers to optimal care for underserved populations and provide strategies for health care professionals to serve these patients better.
• The Lymphoma Research Foundation (LRF) increases awareness of and access to lymphoma-specific education resources and patient support services. LRF hosted the North American Educational Forum on Lymphoma, a signature program which offers presentations by the world's leading lymphoma and patient support experts to patients, survivors, and loved ones. LRF provides webcasts and Telephone Education Workshops (TEWs) which are one-hour, topic-specific educational programs that features leading lymphoma experts with clinical and research interests in a specific subtype of lymphoma. LRF also developed children's booklets on non-Hodgkin lymphomas.
• The Multiple Myeloma Research Foundation (MMRF) increases awareness of multiple myeloma (MM) treatment options and clinical trials among health care providers and improves the reach and effectiveness of MM patient education strategies. The MMRF offers Clinical Insights symposia at top myeloma cancer centers across the country, explaining the most promising MM treatment options. The MMRF also developed MM disease and treatment overview brochures.
• The National Coalition for Cancer Survivorship (NCCS) is expanding its Cancer Survival Toolbox, a program that provides information and self-advocacy skills, and refining the toolbox and its distribution channels to African Americans and Latinos. The NCCS developed two special topics for its toolbox: Living with Multiple Myeloma and Living with Non-Hodgkin Lymphoma.
• The National Marrow Donor Program provides education and resources to the transplant survivorship community through partnerships. A key initiative is the development of an online clearinghouse of transplant-related resources in collaboration with nine partner organizations.
• The Oregon Health & Science University Knight Cancer Institute (OHSU) offers the Adolescent and Young Adult Oncology Program, which provides comprehensive and individualized diagnostic, therapeutic, supportive, and long-term care transition services to adolescents and young adults (aged 15–39 years) diagnosed with cancer. OHSU also is developing a toolkit to disseminate educational materials for adolescent and young adult hematologic cancer survivors via integration with the electronic health record and special electronic forms. These tools will allow timely and customized delivery of relevant educational materials based on the data entered for that patient.
• The Patient Advocate Foundation provides case management services and works with disease-specific organizations to produce new educational materials. The PAF recently launched the National Underinsured Resource Directory, a tool designed to help underinsured individuals faced with high out-of-pocket costs find alternative coverage options or methods for better reimbursement.
• SuperSibs! supports, honors, and recognizes siblings of children diagnosed with cancer by disseminating tailor-made information and education packages that encourage open communication, catharsis, and support between parents, friends, teachers, and children. As a result of their CDC-funded SuperSibs! Scholars Summit in 2009, SuperSibs! created a Sibling Scholars Council, which encourages sibling survivor leaders to develop sibling support Campus Connection Clubs and participate in the Sibling Ambassadors Speakers' Bureau, SuperSibs! Grassroots Fundraising Support Teams, and Outreach Internship Programs across the nation. SuperSibs! connects each Campus Connection Club with community hospital and partner oncology organizations for club member volunteers to support local sibling program needs, while the clubs' fundraising efforts enable ongoing services to local families facing pediatric cancer. Council members have served as speakers at sibling-focused cancer research conferences and international education teleconferences to ensure evidence-informed sibling interventions at schools and hospitals.

Accomplishments

• Community Media Productions created A Lion in the House, an Emmy^® Award-winning Public Broadcasting System television documentary on childhood cancer, which follows five children of diverse socioeconomic backgrounds. They also produced a Web site for survivors entitled Survivor Alert.
• The International Myeloma Foundation expanded outreach to African Americans, the elderly, underserved, uninsured, and underinsured to educate them about myeloma.
• The Research Triangle Institute partnered with the American Cancer Society to develop a comprehensive catalog and report summarizing 293 hematologic cancer resources currently available.

Future Directions

The hematologic grantees have developed a wealth of materials for educating the public, patients, and providers. Future directions include facilitating collaborations between National Comprehensive Cancer Control Program grantees to expand awareness of and use of these materials.