What CDC Is Doing About Hematologic Cancers

The Centers for Disease Control and Prevention (CDC) funded 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.

CDC supports efforts to improve awareness, diagnosis, understanding, and treatment of hematologic cancers. Through funding opportunity announcement DP07-709, a four-year cooperative agreement, the following national health organizations received support to disseminate information and education to cancer survivors including their family members, friends, and caregivers with respect to hematologic cancers and health disparities focusing on leukemia, lymphoma, and multiple myeloma. Below is a brief description of how these organizations used cooperative agreement funds to increase awareness of support services to the hematologic cancer community.

• The Education Network to Advance Cancer Clinical Trials (ENACCT) is a non-profit organization with a mission to improve access to cancer clinical trials through education and collaboration with communities, health care providers, and researchers. With CDC funding, ENACCT and the Cancer Support Community created 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 to improve recruitment, consent, and accrual procedures of minority and medically underserved populations. ENACCT—
  • Recruited, counseled, and provided one-on-one treatment decision support for hematologic cancer survivors facing a treatment decision.
  • Conducted outreach activities to increase cultural competencies and skills among health care providers.
  • Trained more than 150 primary health care providers on options for referring patients to local clinical trials as a first-line treatment, leading to expanded referral of hematologic cancer patients to oncologists participating in clinical trials.
• The Leukemia & Lymphoma Society (LLS) provides opportunities for patients and their caregivers to get the latest diagnostic and treatment information and support services. CDC funding was used to address disparities in access to cancer care for underserved patients, with a special emphasis on the cultural gaps of Hispanic patient populations. This was accomplished by—
  • Reducing barriers to cancer care.
  • Providing proactive patient navigation for blood cancer patients.
  • Educating and training more than 2,700 nurse professionals.
  • Conducting cultural competency trainings for more than 60 LLS chapter staff who provide outreach services.
  • Providing support for a bilingual patient navigation specialist at the LLS' Information Resource Center to respond to inquiries from patients, caregivers, and health professionals about leukemia, lymphoma, myeloma, and other blood cancers.
• The Lymphoma Research Foundation (LRF) funds lymphoma research and provides awareness, access to lymphoma-specific education resources, and patient support services to patients, family members, and health care professionals. With CDC funding, LRF was able to increase awareness and access to lymphoma-specific education resources and patient support services by broadening its outreach to underserved minority and immigrant populations and low-literacy English-speaking patients through the following comprehensive, disease-specific programs and services—
  • Information about clinical trials.
  • In-person workshops and educational forums.
  • A lymphoma helpline.
  • Support networks and volunteer chapter networks.
  • Online resources and publications, teleconferences, Webcasts, and podcasts.
• The Multiple Myeloma Research Foundation (MMRF) increases awareness of multiple myeloma treatment options and clinical trials among health care providers, and improves the reach and effectiveness of multiple myeloma patient education strategies. With CDC funding, MMRF was able to increase awareness through distribution of MM disease and treatment overview brochures, patient and professional toolkits, FastFacts (an electronic newsletter), social media, continuing education-accredited educational symposia, Webcasts, monthly e-mail messages targeted to specific patient populations, and other online resources. MMRF also increased partnerships with ministries and churches to support awareness and outreach campaigns and developed Shepherds Who Care, a regional faith-based awareness campaign designed to reach African-American communities.
• The National Coalition for Cancer Survivorship (NCCS) is the oldest survivor-led cancer advocacy organization in the United States, promoting quality cancer care for all Americans and empowering cancer survivors. CDC funding was used to enhance its award-winning Cancer Survival Toolbox^® and increase distribution to African-American and Latino populations. The Cancer Survival Toolbox^® is a free audio program that provides information and self-advocacy skills through patient stories. Five special topics were developed for the toolbox—
  • Living with Multiple Myeloma (English and Spanish).
  • Living with Non-Hodgkin Lymphoma (English and Spanish).
  • Living with Chronic Lymphocytic Leukemia.
  • Living with Chronic Myelogenous Leukemia.
  • Living with Transplant for Blood and Marrow Transplant (available in November 2012).
  Each audio program uses patient stories to guide the listener through information on understanding treatment options, side effects and symptoms, coping with change, information for caregivers, and more.
• The National Marrow Donor Program (NMDP) provides patients, caregivers, family members, and friends with one-on-one support, financial guidance, and free educational resources including DVDs, booklets, and online tools. Through this funding opportunity, the NMDP developed ExploreBMT, an easy-to-search Web portal to browse resources and services from many organizations that also work with hematologic and other cancers. The NMDP developed additional resources to support the transplant survivorship community, which include a six-edition post-transplant newsletter, a quarterly survivorship e-newsletter for patients and their families, and a brochure addressing emotional needs after transplant.
• 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. With CDC funding, OHSU developed 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 allow for timely and customized delivery of relevant educational materials based on the data entered for the individual patient.
• The Patient Advocate Foundation (PAF) provides case management to resolve debt crisis matters related to diagnosis; mediate insurance appeals; negotiate access to pharmaceutical agents, chemotherapy, medical devices, and surgical procedures; and broker resources to supplement the limits of insurance and to ensure access to care for the insured, uninsured, and underinsured. With CDC funding, PAF—
  • Provided nationwide case management services totaling more than $10 million in debt relief for blood cancer patients.
  • Helped 5,590 blood cancer patients.
  • Educated or enrolled 1,632 patients in clinical trials.
  • Participated in 589 outreach events.
  • Distributed 50,120 publications.
  • Collaborated with 22 state CDC Comprehensive Cancer Coalition members.
  • Created the publication Lighting the Way: A Practical Guide to Clinical Trials and a pamphlet for the Greater Understanding series, both of which have been translated into Spanish.
• SuperSibs! supports, honors, and recognizes siblings of children diagnosed with cancer by disseminating customized information and education packages that encourage open communication and support between parents, friends, teachers, and children. SuperSibs! provides siblings with coping tools to help them understand their feelings of jealousy, fear, and isolation. As a result of its CDC funding, SuperSibs!—
  • Performed a comprehensive evaluation of its social support intervention program that verified the program's impact and prompted program enhancements.
  • Provided more information and resources online for families.
  • Provided speakers at sibling-focused cancer research conferences and international education teleconferences to ensure evidence-informed sibling interventions at schools and hospitals.
  • Worked with state cancer control programs, attending and presenting at their statewide conferences.

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.