CancerCare Patient Support Services: Addressing Financial Distress in Patients with Cancer
Interview with Jane Levy, LCSW-R
Director of Patient Assistance Programs, CancerCare
CancerCare has been serving patients with cancer for more than 70 years. In this interview, Ms Levy discusses the patient support services provided by CancerCare, focusing on their financial assistance programs.
Q Can you describe the type of patient support services provided by CancerCare?
Jane Levy, LCSW-R: CancerCare’s free patient support services include professional counseling, which can be either over the phone or in person, for patients who can come to our offices located in New York City, Long Island, Connecticut, and New Jersey. We are staffed by licensed oncology social workers who provide support, information, and resources to patients with cancer.
We also have several support groups, which are also done in person, over the phone, and online. I lead a telephone support group, and we also have a very robust, professionally led online support group program. We offer educational workshops, over the phone or online as webcasts. These are workshops on cancer-related topics led by world-leading cancer experts.
In addition, we have free publications written by experts that provide information on different cancer-related topics, including information on different tumor types, drug therapy, and coping with cancer. We also provide various forms of financial assistance to cover cancer-related costs and copays.
Q How many patients does CancerCare serve?
Ms Levy: Each year, CancerCare serves 180,000 people in the United States affected by cancer in all 50 states. The bulk of our services in the United States relate to financial assistance for patients, and counseling.
Although our financial assistance is restricted to patients in the United States, people from overseas can now participate in our online support, and many of our educational programs.
Q What types of financial support are available through CancerCare?
Ms Levy: CancerCare offers 2 forms of financial assistance, a traditional Financial Assistance Program and a Co-Payment Assistance Foundation. For both programs, we provide about $14 million annually in financial assistance to more than 21,000 patients.
The Co-Payment Assistance Foundation helps with insurance copayments to cover the cost of chemotherapy and targeted therapies, and is more disease-specific. The traditional financial assistance program offers limited financial assistance for cancer-related costs, such as transportation to and from medical appointments, home care, and childcare. In addition, some of our breast cancer funds allow us to also help with the cost of pain medications and lymphedema supplies.
We have many sources of funding, and many of these funds come with restrictions, such as disease type and where a patient lives. If we currently do not have funding for some patients, our social workers will always work to refer them to other financial assistance resources.
Q How do patients access these financial services? Can they apply directly online, or by phone?
Ms Levy: Patients access our financial services mainly by calling us through our HopeLine, 800-813-HOPE (4673). Those who are looking specifically for copayment assistance may reach us at 866-55-COPAY (866-552-6729). We also get many e-mails from patients asking for support, and we sometimes get referrals through their healthcare providers. But more often than not, patients and family members contact us directly.
Q Are all patients with cancer eligible for financial support from CancerCare? Are there specific criteria to meet, and are some patients turned away?
Ms Levy: For our other Financial Assistance Program, patients are required to have a diagnosis of cancer, which we have to confirm with their oncology provider. Because our funds are limited, our patients have to be undergoing some type of active treatment for cancer to receive financial support. They must live in the United States, Puerto Rico, or the Virgin Islands. We do have some financial eligibility requirements, and this usually represents a household income of a certain percentage of the federal poverty limit.
We provide this information to patients when they contact us, and it is available on our website (www.cancercare.org/financial). There are specific criteria for copay assistance, which are also available on our website (www.cancercare.org/copayfoundation).
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 or the care team to initiate these conversations?
Ms Levy: This is in part good news and in part bad news. The bad news is that patients have tremendous financial distress. The cost of care is going up, and patients are shouldering a larger part of that burden. The good news is that this is now out in the open. Years ago, it really was taboo to talk about cost with your care team, but the stigma has significantly lessened since then.
Today we try to empower patients to talk to their care providers about the financial issues they are facing. It is also important for care providers to become more sensitive to the financial and emotional distress associated with a cancer diagnosis in their patients, and to familiarize themselves with what available resources there are, such as CancerCare, so that they can help patients effectively.
A few years back, the American Society of Clinical Oncology published a patient-oriented booklet on the costs of cancer care, which discussed the need for patient–physician communication about financial issues. At the time this was a big breakthrough, with many providers and oncologists saying that they never really talked about costs with their patients.
This year, CancerCare published our landmark Patient Access and Engagement Report, which reflects the perspective of more than 3000 patients with cancer. One of the key findings of that report is that screening for psychological or financial distress was not consistent in clinical practice, and that providers need to be aware of their patient’s financial distress. The report recommends that care providers discuss treatment costs with patients and the ability of patients to meet those costs when designing treatment plans for a patient.
Q What else, do you think, needs to be done to increase awareness of these programs, and the need to improve the conversations about the cost of care?
Ms Levy: We never know where along the continuum patients are going to be hit with financial distress—Is it right at diagnosis? Is it when they start the treatment plan? Or is it when they get the word back from their insurance? This is a very complicated issue. There are pressure points all along the continuum of cancer care where everybody involved should, one hopes, intercede.
I think there needs to be a holistic effort to address cost, but for many patients, it starts at the provider’s office. Major medical centers tend to have a lot of support services. However, many patients receive care in the community, where they may not necessarily have access to a social worker or a patient navigator.
There should also be an effort on the part of financial counselors in certain practice settings to become more aware of services and programs available to patients at the regional or national level.
Q As you reflect on CancerCare and the patients it has helped, is there any experience that stands out and captures the purpose and mission of your organization?
Ms Levy: We are truly starting to see the growth of patient empowerment to a large degree. We have come a long way from when it was taboo to talk about cancer. The idea of becoming a partner with your healthcare provider and advocating for your rights, asking questions, and becoming educated, has become so important and prominent. Now, so many patients with cancer have so many choices, and many doctors are asking the patient—“What do you want to do?”
Most of this tremendous change has been spurred on by the patient advocacy movement, which has been terrific. This progress has been accompanied by the growth of technology, which has allowed patients to communicate with each other and to learn from each other.
In addition, for some cancers, there have been great treatment innovations over the years that evolved very quickly and have changed the face of cancer care. Still, that human touch of reaching out to people to provide help and support is so important. That has not changed.
Q Are there other topics you think providers need to know in terms of how they can support their patients better?
Ms Levy: Providers need to know and keep in mind that there are key organizations that can help their patients with cancer, and that they can refer patients who face financial and psychological distress to those organizations. If the providers do not have the answer, they can put patients in touch with organizations, such as CancerCare and other oncology groups, for help and support; it is important that we increase awareness of all these programs for the benefit of patients.