It Adds Up

CHRONIC LYMPHOCYTIC LEUKEMIA (CLL) is something of an anomaly among other cancers. As long as a patient has no symptoms and minimal blood count changes, a watch-and-wait approach is often followed. When it comes time to begin treatment, a patient is often given oral medications such as Imbruvica (ibrutinib) and Venclexta (venetoclax), which are expensive — and, in many cases, must be taken for years.

The steep, ongoing costs can create financial hardship. “The average oral oncology drug is about $10,000 per month,” says Jeremiah Moore, Pharm.D., of the Wilmot Cancer Institute at the University of Rochester Medical Center in New York. As part of the institute’s CLL team, he guides patients through their medication and prescription options and helps them apply for financial assistance. “We want them to continue on therapy and then live a normal life and worry as little as possible about their pharmaceutical expenses,” he says.

Patients with CLL must consider not just the medical costs, such as medications, lab tests and visit copays, but also unforeseen nonmedical expenses — gas, parking expenses, lodging and travel expenses, meals away from home, child care and mental health care — and a potential loss of income. That’s where a consultation with a social worker or case manager can be of benefit.

“It’s about helping the patient understand and be their own advocate (and) also being a supportive contact for nonmedical resources,” says Audrey Lawrence, a licensed master social worker at Wilmot Cancer Institute.

Insurance is a common barrier. Patients may not know who to call for help or how to find the information they need. Older patients may be on Medicare — the median age at diagnosis of CLL ranges from 65 to 70 — and on limited income; others might have no insurance at all. Independent nonprofit organizations, such as Leukemia & Lymphoma Society, CancerCare and Patient Access Network Foundation can assist, according to Moore.

If patients have to stop working, social workers can help them navigate applying for social security disability and, in severe cases, navigate local financial and housing resources, Lawrence says. Some independent grants provide cash assistance but depend on available funding, which can change day to day.

“We have a number of patients that travel to be seen on an intermittent basis as well as out of town patients who receive all of their care here,” says Paul Barr, M.D., who is also part of the institute’s CLL team. “Having the ability of patients here in clinic to have social work, pharmacy and additional support services available that day makes a big difference in a short amount of time.”

Barr advises patients to have an open conversation with their oncologist. “We are always willing to discuss any patient concerns,” he says. “A lot of physical ailments need to be covered. We encourage them to contact us through phone or (the) electronic medical record system with questions as they arise, so it doesn’t always have to be addressed in that 15- to 30-minute visit.”

Asking questions and getting to know the medical team is crucial, agrees Lawrence. “We are not mind readers. No one on the team will know if you’re struggling, even if it’s just the distress of future costs,” she says. “A good question to ask is, who on this team can help me with my nonmedical questions?”

The team members also advise patients to bring a caregiver, friend or loved one to appointments as a second set of ears and eyes. Join a support group and learn from others who have not only been diagnosed with cancer but also experienced the emotional, psychological and financial tolls of the disease. The American Cancer Society keeps a database of support groups throughout the nation, Lawrence says.

“(Care) can get expensive, and patients can live a long time, which is a good problem to have,” says Barr. “But it’s a different conversation compared with (that of) a lot of other patients with cancer.”

This article is part of the Bringing the CLL Community Together program. Funding is provided by an unrestricted educational grant from Pharmacyclics, an AbbVie Company, and Janssen Biotech, Inc.