Patients with multiple myeloma are making significant lifestyle trade-offs to manage the cost of healthcare, according to findings from the Cancer Experience Registry presented at ASH 2015. Joanne S. Buzaglo, PhD, Senior Vice President, Research and Training, Cancer Support Community, Philadelphia, PA, discussed survey results of patients with multiple myeloma who are assuming more costs, including direct costs (ie, copays and prescriptions) and indirect costs (ie, transportation costs and loss of income), which is leading to financial distress.
“With the hope and excitement around new myeloma therapies come challengers for patients and their families,” said Dr Buzaglo. “A significant proportion of patients are experiencing high levels of emotional burden related to financial toxicity, which is associated with reduced quality of life and poorer health outcomes.”
The Cancer Experience Registry
The online Cancer Experience Registry tracks the social and emotional experience of patients with cancer and survivors across the United States. Of the almost 9000 patients enrolled in the registry, 550 have been diagnosed with multiple myeloma.
From July 2013 to July 2014, 266 US-based registrants completed survey questions that addressed the financial burden of multiple myeloma. The median time since diagnosis was 4.5 years.
Using the Impact of Event Scale, the researchers then measured stress-related thoughts about the financial impact of multiple myeloma.
When patients were asked how much they (and their family) spend on out-of-pocket costs for multiple myeloma, 73% reported ≥$100 monthly, with nearly 50% reporting ≥$250 monthly.
“Treatments are much longer-lasting now with multiple myeloma, which means chronic out-of-pocket costs every month, often amongst people with limited incomes or who are in retirement,” said Dr Buzaglo.
Impact on Patients
To manage their medical costs, 32% of patients cut grocery bills and deplete savings, and 22% borrow against or use retirement funds. Other patients opted to refinance their home or chose treatment that was not as effective but was less expensive.
“These strategies are proxies for financial burden,” Dr Buzaglo said.
In addition, 47% of patients were moderately, seriously, or very seriously concerned about health insurance or money, and 33% indicated they were often or always upset about money and the cost of care. Furthermore, 32% of patients reported experiencing clinically significant stress-related anxiety about the financial cost of multiple myeloma and its treatment.
“These are people who can’t sleep at night, because they are thinking about the financial cost of multiple myeloma,” said Dr Buzaglo, who noted that people with financial burden are almost 2.5 times more likely to be at risk for depression compared with those without financial burden.
“Patients with high levels of depression are less likely to fill prescriptions and may even skip doses,” she said, adding that unremitting stress is associated with poor immune function and poor health outcomes. Among patients with financial burden, more than 50% were at risk for depression.
Despite these troubling findings, only 28% of patients reported that their healthcare team discussed the impact of multiple myeloma on their personal finances. More than 80% of those surveyed indicated that they would be interested in getting financial assistance for the cost of their treatment.
“Patients want financial counseling and are willing to get help,” said Dr Buzaglo. “We need to ensure they have access to the appropriate financial and emotional counseling, and that these services are adequately reimbursed.”