Experiences of patients with multiple myeloma enrolled in high-deductible health plans: A mixed-methods study

Abstract Introduction: Nearly half of U.S. private-sector employees are enrolled in high-deductible health plans (HDHPs), which can be cost-effective for individuals with limited healthcare needs. However, for those living with multiple myeloma, HDHPs are associated with greater and more volatile out-of-pocket (OOP) expenditures than standard plans (DOI: 10.1200/OP-24-00978), potentially contributing to financial toxicity. This mixed-methods study examined the prevalence of HDHP enrollment and related experiences among myeloma patients. Methods: Myeloma patients aged 64 years or younger within the Washington University School of Medicine Plasma Cell Dyscrasia Tissue and Data Registry were invited to complete a survey of their health insurance plans and expenses. A subset enrolled in HDHPs, defined as a minimum deductible of $1,500, were approached for a semi-structured qualitative phone interview about their experiences. Common themes were deduced referencing a previously described conceptual model of financial toxicity among myeloma patients (DOI: 10.1200/OP.23.00645) and confirmed by study team consensus. Results: Of 84 respondents to the initial survey (median age, 59.5 years; 64% male; 81% White), 31% were insured primarily through Medicare or Medicaid, and 67% through commercial insurance. Two patients were uninsured after being recently disenrolled from Medicaid. Among commercially insured patients who reported their deductible (n=45), 60% were enrolled in an HDHP. Fifteen patients participated in interviews, from which several recurring themes emerged. Many described a lack of control over plan selection, with decisions driven largely by their employers. As one patient shared, “[The plan] is through my employer, and I do not have any say or any influence on who they choose, and it basically changes every year.” Others echoed similar constraints: “There is only one plan [offered through employer]. Every year, they go through and get what they can afford,” and “Every year for the past five years, [the deductible] changes, and it goes higher and higher and higher and higher.“ For those with options, financial considerations heavily influenced decision-making: “The mental math is, can we afford [the premium], first of all?” Another elaborated, “Well, you look at what your expected expense would be under each plan… If you have a lower deductible, you pay a higher premium.” Notably, some patients projected that HDHP enrollment would reduce their OOP spending due to yearly maximums: “It was a lot cheaper to pay my $5,000 individual deductible than it was getting fees from doctor’s offices, doctor visits, hospital stays… On an annual basis, it saved me money.” Yet, determining this was burdensome: “I actually made a spreadsheet with all of the different options, and I entered the maximum out-of-pocket expense for myself because I knew I would need it… Then I chose the smallest out-of-pocket.” Still, maintaining access to trusted providers often outweighed cost concerns. One patient stated, “If you are comparison shopping, the first thing you're looking at is if [the hospital] is part of it.” Another added, “If an insurance plan is sayin' that we need to switch you to a different network, that's a no-go from the beginning.” Finally, participants described relying on outside resources—such as health savings accounts (HSAs), hospital payment plans, or personal networks—to manage financial strain, especially after deductible resets. One patient noted meeting her deductible on January 2nd, following its reset the day prior: “I needed my cancer medication… We were able to use the health savings plan which had nothing in it because of last year—but use it like a credit card…then I have to pay back the HSA.“ Another reflected, “I’m still paying off [the hospital] from when I was in the hospital for my [stem cell transplant seven years ago]. I will say I will give [the hospital] tons of credit for allowing patients to make payments with no interest.” One participant shared, “I will always be able to pay my bills because I have family who will help.” Conclusion: Younger myeloma patients often face limited insurance choices, and many enroll in HDHPs to balance cost with continuity of care. For some, HDHPs may represent the most economical option, but evaluating this can be onerous, and many rely on debt or external support to manage deductible-related costs. Ongoing research will further clarify insurance-related drivers of financial toxicity.