Cancer is one of the costliest conditions to treat today in the United States. With outcomes among patients with lymphoma improving, managing costs related to the diagnosis and treatment of their disease is a major concern.
In 2005, Anita Jones noticed dry patches of skin developing on her face, including her neck and nose. Months later, after having seen three different dermatologists, the then 47-year-old from New York was diagnosed with lymphoma. “My dermatologist told me it was lymphoma, but when he said it, I never thought it was cancer,” says Jones. Jones was diagnosed with cutaneous T-cell lymphoma (CTCL), a rare and incurable type of non-Hodgkin lymphoma that appears on the skin.
Symptoms for CTCL include skin patches, plaques, tumors or a reddening of the skin called erythroderma. Many patients with CTCL may experience an initial misdiagnosis due to CTCL skin lesions mimicking the look of other skin conditions like eczema, psoriasis, and dermatitis.
Because it is a rare disease, management of CTCL is usually done at centers with expert experience treating it or in partnership with such centers. The treatment is highly tailored for each patient but may include a combination of skin-directed treatments such as topical corticosteroids, topical chemotherapy, skin radiation therapy and ultraviolet light, among others.
Jones immediately underwent intense skin radiation therapy for 30 days to eradicate the lesions on her face. She was elated to learn that the procedure removed the patches but, because Jones’ disease was chronic, they quickly came back.
After nearly six years of frequent skin radiation therapy and chemotherapy, Jones eventually maxed out her sick time, paid time off and medical leave. She made the decision to retire early from employment at her local police department, where she worked for 20 years. “When I finally had to retire, I felt terrible. I didn’t know what to do,” she says. “I didn’t know how I was going to sustain my treatments on a fixed income. I started counting pennies—I mean looking for pennies in my house to pay for travel to treatment.”
Jones, now 61, still undergoes frequent treatments for her CTCL, which includes a combination of chemotherapy for a period of six months, as well as phototherapy three times a week. She struggles to cover the costs to and from treatment, co-pays for medication and other cost-of-living expenses. “Due to the radiation on my face, I have glaucoma, and the cost of the medication is $300 per month,” says Jones.
“I sometimes take $150 from rent to pay half of my medication, or stretch one month of medication to two months to pay for travel to my treatments. It’s like robbing Peter to pay Paul.”
Unfortunately, Jones’ story is not unique. Cancer is one of the most expensive medical conditions to treat in the United States. Lymphoma patients may receive multiple types of treatments, are frequently hospitalized and/or incur a variety of ancillary costs that add up. According to a study published in the Journal of American Medical Association (JAMA), 39 percent of cancer patients experienced higher-than-expected financial burden from cancer care costs, averaging $703 per month out of pocket. In fact, cancer survivors usually report higher out-of-pocket spending than people who have not had cancer.
“Financial toxicity” describes problems a patient faces related to the cost of medical care. And this problem seems to be getting worse for cancer patients as treatments and survival rates improve. “The cost of care has steadily climbed for anyone with a serious medical condition, as well as the cost of drugs related to cancer,” says Joanna Morales, Chief Executive Officer at Triage Cancer.
“The cost of care has steadily climbed for anyone with a serious medical condition, as well as the cost of drugs related to cancer.”
Compared to 10 years ago, patients are receiving more expensive chemotherapy, immunotherapy and other new types of treatment. In addition, many patients may receive newer treatments until disease progression, which could last for several years. Copayments for prescription drugs covered by health insurance may be more for higher-priced drugs or brand name drugs (versus generic drugs) and may increase over time. These copayments and coinsurance for drugs, coupled with other costs not covered by insurance such as transportation to and from treatment and cost-of-living expenses, may cause financial toxicity.
“The cost of health insurance coverage has also gone up,” says Morales. “People have focused on purchasing health insurance or choosing options with the lowest monthly premiums, which often have the highest out-of-pocket costs. And because most people don’t understand how out-of-pocket maximums work, this is where we see patients take the greatest hit.”
Because of debt burdens like inadequate health insurance, high copayments for prescription drugs and ancillary costs related to treatment, the effects of financial toxicity are detrimental to patients’ quality of life and their ability to maintain their health.
“Data shows people with inadequate health insurance— with high deductibles and copays—are not going to get medical care because they simply cannot afford to pay those costs,” says Morales. “This is certainly true with prescription drugs. If a patient walks into a pharmacy and the copay is higher than they can afford, more often than not they are walking out of that pharmacy without their medication.”
Even for many patients with full-time employment and adequate health insurance, financial toxicity is a possibility. Having cancer may make it difficult for patients to do the physical and mental tasks required for their job. Many may miss time at work or not be able to work at all.
Many patients and caregivers contacting the Lymphoma Research Foundation (LRF) for financial assistance and referrals often cite their inability to work consistently or living on a fixed income as reasons for seeking help. There are a number of reasons people have provided during their request for financial assistance, including that they are retired and living off Social Security, or they do not have insurance or they have insufficient coverage,” says Izumi Nakano, Associate Director of Support Services at LRF.
“However, the number one reason many request financial assistance is because of their inability to work due to treatment.”
One hundred percent of LRF’s Patient Aid Program is privately funded by individual supporters and foundations who want to pay it forward and help lymphoma patients in need. LRF’s Patient Aid Program assists patients currently in active treatment who are in need of financial assistance to cover the costs associated with care.
Through the LRF Helpline, eligible patients receive a one-time financial grant, and all patients receive referrals to additional financial assistance programs. The Patient Aid Program is entirely privately funded by individual supporters and foundations who want to pay it forward and help lymphoma patients in need.
“The program offers hope to those in need of support,” says Nakano. “A lymphoma diagnosis is difficult and stressful enough to have to deal with, but the additional pressure of not being able to afford treatment-related expenses in addition to other normal life expenses can be devastating.”
Since the inception of the Patient Aid Program, LRF has awarded more than 3,500 grants, but the need continues to rise each year. “The need for the program has risen over the past several years, where now, nearly 5,000 calls and emails to the LRF Helpline are a need for financial assistance,” says Nakano.
“LRF’s Patient Aid Program has awarded more than 3,500 grant awards to date.”
Although the need for financial assistance programs like LRF’s is still great, there are ways patients and caregivers can work to mitigate costs related to treatment. According to Morales at Triage Cancer, the most important way to mitigate debt burden is finding adequate health insurance and understanding how to navigate health insurance coverage.
This includes understanding the appeals process if insurance denies a claim to avoid paying out of pocket for care. Understanding one’s employment rights and wage replacement options like disability should also be considered.
“I always encourage people to think as broadly as possible when talking about financial toxicity,” says Morales. “The cost of care is a very important conversation. But a major reason why financial toxicity is so hard to address is because there are a variety of factors that contribute to it—and there isn’t just one solution. People should understand all the risk factors so they can be addressed and lower the financial burden as much as possible.”
Read more articles and updates in the latest issue of Pulse
Pulse is a publication of the Lymphoma Research Foundation, providing the latest updates on the Foundation and its focus on lymphoma and chronic lymphocytic leukemia (CLL) research, awareness and education. Read more >