The Leukemia & Lymphoma Society Patient Support Services: Helping Patients Manage Their Cancer Care

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Interview with Beatrice Abetti, LCSW
Director, Information Resource Center, The Leukemia & Lymphoma Society

The Leukemia & Lymphoma Society (LLS) provides support services for many patients with cancer, including education related to a variety of blood cancers, as well as financial support for patients with certain blood cancers to help them pay for their medications and other treatment-related expenses. Oncology Practice Management asked Beatrice Abetti, LCSW, Director, Information Resource Center, LLS, to describe some of the patient support services provided by LLS, focusing on their financial assistance programs.

Q When was LLS formed? And as you reflect on LLS and the patients it has helped, is there an experience that captures the organization’s purpose and mission?

Beatrice Abetti, LCSW: LLS was founded in 1949 by the de Villiers family, who lost a teenage son to leukemia in 1944; the society was initially called the Leukemia Society, and was later named the Leukemia Society of America. Dedicated to curing leukemia, lymphoma, myeloma, and other blood cancers, it is now called The Leukemia & Lymphoma Society (LLS). LLS is the world’s largest voluntary (nonprofit) health organization dedicated to funding blood cancer research and providing education and other patient services.

Q Can you describe the type of patient support services provided by LLS?

Ms Abetti: LLS’s Information Resource Center is a toll-free call center staffed with Master’s degree–level healthcare professionals. Our information specialists can provide extensive information about the different blood cancers; the available treatment options, including participation in clinical trials; where to get the best treatment for a specific cancer or where to get a second opinion; as well as resources for different needs that arise for patients with cancer and their families. We also provide emotional support and guidance to patients before, during, and after treatment.

Q Patients with cancer are facing an increasing share in the cost of their treatments. Does LLS offer financial support to all patients with cancer, or just to patients with leukemia or lymphoma?

Ms Abetti: Our Copay Assistance program offers financial assistance to offset the cost of treatment and the cost of health insurance to patients with certain blood cancers. The copay program helps eligible patients pay for their copays and their insurance premiums for prescription drugs. LLS also offers some travel assistance related to cancer treatment for eligible patients.

Q What types of financial support are available through LLS for this patient population?

Ms Abetti: LLS offers copay and premium assistance for patients with some types of blood cancers, depending on the available funding, as well as some travel and/or lodging assistance through which qualified patients with blood cancer receive assistance to help offset their treatment-related transportation and lodging expenses. For a complete list of blood cancer types that qualify for copay and premium assistance, visit our website at www.lls.org/copay.

Q Are there specific criteria that patients must meet to receive financial support through LLS?

Ms Abetti: Patients must have a covered blood cancer diagnosis, health insurance, and must meet certain income guidelines. However, to receive travel assistance, a patient can be insured or uninsured. Only copay support requires health insurance coverage.

Q What other resources and supportive services are available through LLS for patients with cancer?

Ms Abetti: LLS provides free information about blood cancer diagnoses, treatment options, clinical trial searches and navigation, and referrals to any resources available to patients to minimize their barriers to care. We also provide free publications on the relevant diagnoses and a variety of related topics, educational programs by top experts in the field of hematology/oncology, online and in-person support groups, local resources, and patient support through our 63 local chapters throughout the United States and Canada.

Q How can providers help patients who experience financial or psychological distress and need these types of support? When is the right time for providers and/or the care team to initiate these conversations?

Ms Abetti: Providers should refer patients at the time of diagnosis to the LLS Information Resource Center for assessment of needs. Once that first contact is made, patients or caregivers should stay in touch with the information specialists and reach out to LLS again when new needs arise.

Q How do patients access these types of financial support? Can they apply directly to LLS, or through their provider’s office?

Ms Abetti: For copay assistance, patients may contact us directly by phone at 877-557-2672 or online at www.lls.org/support/financial-support/co-pay-assistance-program, between 9 am and 5 pm EST, Monday through Friday. For travel assistance, patients may contact us at 844-565-2269 or www.lls.org/patient-travel-assistance-program.

Q What is the best way for patients to reach for support?

Ms Abetti: Patients can access our support services at www.lls.org/support/financial-support. By accessing the website at www.lls.org/support/information-specialists, patients can also communicate with information specialists by phone (800-955-4572), AnswerChat (instant messaging), or e-mail to infocenter@lls.org. The Information Resource Center staff responds to e-mails within 24 to 48 hours.

Q There are many patient support programs within the oncology community. Are the needs of patients with cancer being met through these programs? What can be done to increase awareness of these programs and the assistance they provide?

Ms Abetti: Our Information Resource Center staff is familiar with the financial assistance programs offered by other organizations, and we refer patients to these programs as appropriate. We maintain current information on all available patient assistance programs. Healthcare providers should refer patients with blood cancers to LLS at the beginning of their diagnoses, so that patients can derive optimal benefit from the available resources at LLS.

Q Are there any other topics that would be useful for providers and oncology practice managers in terms of how LLS or they could support their patients?

Ms Abetti: We cannot stress enough how important it is for people affected by a blood cancer to be connected to LLS as soon as possible after their diagnosis, nationally through the Information Resource Center, and locally through their local LLS chapter. No one should be facing cancer alone and without the emotional and educational support of cancer organizations like LLS.