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

Families in UK lose more than £6,500 annually due to CF burden

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Having cystic fibrosis (CF) can put a tremendous financial strain on patients: In the U.K., the typical family affected by the genetic disease will lose more than £6,500 (about $8,000) every year as a consequence.

That’s according to a new report, “The Financial Costs of Cystic Fibrosis,” published by researchers at the University of Bristol. The work was funded by the Cystic Fibrosis Trust, a Great Britain-based nonprofit.

“This research shows the huge financial burden that comes with having cystic fibrosis,” David Ramsden, CEO of the CF Trust, said in a press release, noting that the condition is lifelong,

The authors call on policymakers to take action to reduce the financial strain for families affected by CF. This includes making sure benefits continue to rise in line with cost of living and ensuring hospitals have affordable parking and food options.

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The Trust also says people with CF shouldn’t have to pay charges for their prescriptions or value-added tax (VAT) for energy bills.

“With the cost of living crisis pushing bills even higher, there is a desperate need for action to support those facing these additional costs,” Ramsden said.

Jamie Evans, a co-author of the report, added: “It is crucial that policymakers take action to protect the financial wellbeing of those with CF and similar conditions.”

For the report, the researchers surveyed 174 adults with CF in the U.K., as well as 133 parents of children with the disease. The results were statistically weighted to be reflective of the roughly 10,000 people with CF who live in the U.K.

Results of the report highlighted that CF impacts family finances both by adding costs — such as medical expenses, traveling to appointments, and special dietary requirements — and also by reducing income as people often work less so as to have more time to deal with their disease and its consequences.

More than half (59%) of adults with CF who responded to the survey had lost income due to the disease in the prior two years, the findings showed.

The most common reasons were taking unpaid leave for medical appointments (27%) and giving up work for the foreseeable future (22%). Additionally, nearly three-quarters (71%) of adults with CF said they had decided not to pursue education, training or employment opportunities because of their disease.

“CF is such a misunderstood condition and, in my experience, most people find it tough to comprehend the need for unplanned admissions and appointments which are such regular occurrences for so many CF patients,” said Jess, an adult with CF.

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Among parents of children with CF, 77% had lost income due to their child’s disease; again, the most common reasons were taking unpaid leave (46%) and giving up work for the foreseeable future (26%). The reduction in income tended to be higher among parents of children with more severe disease.

Extra costs related to CF added up to more than £200 (nearly $250) for the typical family. Added together with the loss of income, the median total financial burden on families affected by CF was calculated at £564 (about $700) per month — nearly £6,800 (more than $8,300) per year.

“This study highlights how long-term health conditions such as cystic fibrosis can have significant knock-on impacts on families’ finances, both by adding extra costs and potential resulting in loss of income,” Evans said.

Nearly a quarter (24%) of adults with CF, and more than a third (35%) of parents of children with the disease, reported that paying their bills each month was a “constant struggle” — a rate markedly higher than that of families in the U.K. as a whole, for whom it is 17%.

This research shows the huge financial burden that comes with having cystic fibrosis.

Money-related anxiety was reported by the vast majority of respondents: 76% of adults with CF and 85% of parents.

“Financial difficulty can also worsen people’s mental and physical health – for example, by forcing them to cut back on spending on the very things that keep them healthy,” Evans said.

While the report indicates that people with CF face financial challenges due to their disease, it also highlights “the great efforts that those with CF make in order to keep themselves as healthy as possible,” according to researchers.

“This comes at a significant financial cost, but many consider it a price worth paying to improve their quality of life,” the team wrote.

The report also noted patient difficulties in accessing insurance, obtaining benefits, and finding suitable accommodations. Some individuals were unable to purchase life insurance.

“The rising cost of living and increasing inadequacy of incomes … poses a substantial challenge in the coming months and years,” the researchers concluded. “While people with CF are appreciative of any help that they get, more is almost certainly needed.”

“I’ve just had the flu, and needed to keep the house warm which meant my gas meter was eating all my wages,” said Shane, an adult with CF. “I’ve had to dip into my emergency fund more than once recently. I can’t put a price on my health but with these price hikes I feel like I’m having [to do so].”

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