Almost two-thirds of CF patients in US face financial hardship: Survey

High cost of living with cystic fibrosis seen to weigh on care choices

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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Nearly two-thirds of the people with cystic fibrosis (CF) in the U.S. are under financial hardship, and many face unmet medical needs, meaning their treatment is not being addressed adequately.

Researchers with George Washington University and the Cystic Fibrosis Foundation, who conducted this analysis into the cost of living with CF, included under financial burden issues with debt, housing, and food security. Unmet medical needs included irregularities with prescriptions, delayed or shortened hospital stays, and skipped or delayed care visits.

Financial hardship was particularly “common” among low-income patients, those who qualified for government health benefits under both Medicare and Medicaid, the researchers noted.

“Income is the biggest risk factor for financial burden for people with CF, with people dually covered by Medicare and Medicaid particularly at risk,” they wrote.

The analysis, “Cost burden among the CF population in the United States: A focus on debt, food insecurity, housing and health services,” was published in the Journal of Cystic Fibrosis.

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Financial Strain Is ‘Huge’ for Patients, Families in CF, Report Finds

63.5% of 1,856 respondents site at least one financial burden in 2019 survey

Living with a chronic disease such as CF requires complex and often expensive care and treatment “that are not completely covered by health insurance,” the study noted, leading to “difficulties [in] affording basic life necessities.”

To determine the financial burden facing CF patients in the U.S., and risk factors for such hardship, the researchers developed a survey tool called CF Health Insurance Survey (CF HIS).

It drew on validated questions from U.S. national surveys related to financial hardship, health insurance, access to care, and unmet medical needs, with CF-specific questions crafted with the foundation’s aid. Financial burden was determined through 16 questions falling into three categories: debt, housing, and food insecurity.

To strengthen the survey’s accuracy, the researchers “weighted” findings to bring them more in line with the 2019 CF Foundation Patient Registry annual data report, including for factors like age and insurance coverage.

A total of 1,856 CF patients or their parents completed the survey, distributed online from July to December 2019. Slightly more than half of the respondents (55.4%) were female, and almost half (46%) were children or adolescents younger than 18. The vast majority (95%) were white and 2% were Black; among all respondents, 7% identified as Hispanic or Latino.

Some 1,179 (63.5%) faced at least one type of financial burden: 1,028 people (55.4%) noted debt issues, 490 (26.4%) had problems with housing, and 608 (32.8%) faced food insecurity, meaning that, due to financial constraints, they might not have access to enough or adequate food to meet their needs.

Adult patients were most likely to struggle with both debt and food insecurity, results showed, with “61% of young (aged 18–35) and 66% of older (36+) adults” noting issues with debt.

Income fell below the federal poverty level (FPL) for 161 of all survey respondents (8.7%), and most (88.8%) reported at least one type of financial burden, starting with food insecurity (77%) followed by debt (64%) and housing (46%) issues.

This FPL is an economic measure used by federal and state agencies to decide whether an individual’s or a family’s income qualifies for government benefits like Medicaid, a public health insurance program for low-income residents. The federal poverty level in 2019 for an individual was an annual income of $12,490 and $25,750 for a family of four.

Low income a particular risk for hardship, but higher incomes also struggle

Low income, accordingly, was seen as a risk factor for financial burden, with those with incomes below the federal poverty level being 6.84 times as likely to be struggling financially that those with incomes 400% above that level. People eligible for both Medicare and Medicaid (whose eligibility typically starts with incomes 138% of the FPL) had 4.26 times higher odds of such burden.

These people also “appear to have the highest risk of food insecurity,” being 5.41 times more likely to lack access to needed foods than those with private insurance, the study noted.

While neither Medicaid nor Medicare coverage significantly associated with any financial hardship, those covered by both these programs “are the most vulnerable insurance group to the risk of financial burden” despite the protection dual coverage brings, the researchers wrote.

Slightly more than half of respondents (52.1%) with incomes that exceeded 400% of the federal poverty level, however, also reported being under financial burden.

More than half of survey respondents (54.1%) were covered under private health insurance, whereas 809 (43.6%) were covered under Medicare (120 people), Medicaid (625 people), or both (64 people). Fewer than 2% had no insurance.

“It is important to note … that people with private health insurance were at higher risk of debt than those covered by Medicaid, perhaps because of the cost of private insurance premiums and other out- of-pocket costs,” the researchers wrote. And while these people are more likely than those in other insurance groups to be comfortable with food, “they nevertheless experience food insecurity at rates almost double the national average.”

Many reported facing an unmet medical need due to costs in the previous year: 446 (24%) were unable to get needed prescription medications, 225 (12.1%) delayed or shortened a hospital stay, and 382 (20.6%) delayed or skipped a care center visit.

Debt issues increased the risk of delayed or altered hospital stays and delayed sick care visits by almost six times, while food insecurity raised the likelihood of missed or delayed routine and sick care visits by seven to eight times, the study reported. A risk of unmet prescription needs, and missed or delayed care visits rose nearly five times with housing concerns.

“CF is an expensive condition to treat,” the researchers wrote. “It would stand to reason that some people with CF would struggle to cover the costs of care, especially in the absence of coverage or in cases of underinsurance, and would need to make tradeoffs between health care and other daily needs such as food or housing.”

Noting their study “was not designed to identify the causes of financial burden, or the extent to which these were a function of health care costs … it is clear that financial burdens have important implications for access to care for people with CF,” with them being “more likely to delay or completely forgo health care, including routine care visits and prescription and over-the-counter medications recommended by their care team,” they scientists concluded.

CF care teams should consider “the role that financial burdens play in care-seeking behavior,” they added.

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