{"id":47972,"date":"2023-01-28T16:37:27","date_gmt":"2023-01-28T16:37:27","guid":{"rendered":"http:\/\/www.brandon.ddtest.info\/multisite-test\/financial-strain-is-huge-for-patients-families-in-cf-report-finds-families-in-uk-lose-more-than-6500-annually-due-to-cf-burden\/"},"modified":"2023-01-28T16:37:27","modified_gmt":"2023-01-28T16:37:27","slug":"financial-strain-is-huge-for-patients-families-in-cf-report-finds-families-in-uk-lose-more-than-6500-annually-due-to-cf-burden","status":"publish","type":"post","link":"http:\/\/www.brandon.ddtest.info\/multisite-test\/financial-strain-is-huge-for-patients-families-in-cf-report-finds-families-in-uk-lose-more-than-6500-annually-due-to-cf-burden\/","title":{"rendered":"Financial Strain Is ‘Huge’ for Patients, Families in CF, Report Finds | Families in UK Lose More Than \u00a36,500 Annually Due to CF Burden"},"content":{"rendered":"

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Having cystic fibrosis<\/a> (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 \u00a36,500 (about $8,000) every year as a consequence.<\/p>\n

That\u2019s according to a new report, \u201cThe Financial Costs of Cystic Fibrosis<\/a><\/span>,\u201d published by researchers at the University of Bristol. The work was funded by the Cystic Fibrosis Trust<\/a>, a Great Britain-based nonprofit.<\/p>\n

\u201cThis research shows the huge financial burden that comes with having cystic fibrosis,\u201d David Ramsden, CEO of the CF Trust, said in a press release<\/a>, noting that the condition is lifelong,<\/p>\n

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.<\/p>\n

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\n \"exhaustion,\n <\/div>\n<\/p><\/div>\n<\/div>\n

Disease costs put financial strain on families: study<\/h3>\n

The Trust also says people with CF shouldn\u2019t have to pay charges for their prescriptions or value-added tax (VAT) for energy bills.<\/p>\n

\u201cWith the cost of living crisis pushing bills even higher, there is a desperate need for action to support those facing these additional costs,\u201d Ramsden said.<\/p>\n

Jamie Evans, a co-author of the report, added: \u201cIt is crucial that policymakers take action to protect the financial wellbeing of those with CF and similar conditions.\u201d<\/p>\n

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.<\/p>\n

Results of the report highlighted that CF impacts family finances both by adding costs \u2014 such as medical expenses, traveling to appointments, and special dietary requirements \u2014 and also by reducing income as people often work less so as to have more time to deal with their disease and its consequences.<\/p>\n

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.<\/p>\n

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.<\/p>\n

\u201cCF 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,\u201d said Jess, an adult with CF.<\/p>\n

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Extra costs for CF care, daily living<\/h3>\n

Among parents of children with CF, 77% had lost income due to their child\u2019s 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.<\/p>\n

Extra costs related to CF added up to more than \u00a3200 (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 \u00a3564 (about $700) per month \u2014 nearly \u00a36,800 (more than $8,300) per year.<\/p>\n

\u201cThis study highlights how long-term health conditions such as cystic fibrosis can have significant knock-on impacts on families\u2019 finances, both by adding extra costs and potential resulting in loss of income,\u201d Evans said.<\/p>\n

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 \u201cconstant struggle\u201d \u2014 a rate markedly higher than that of families in the U.K. as a whole, for whom it is 17%.<\/p>\n

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This research shows the huge financial burden that comes with having cystic fibrosis.<\/p>\n<\/blockquote>\n

Money-related anxiety was reported by the vast majority of respondents: 76% of adults with CF and 85% of parents.<\/p>\n

\u201cFinancial difficulty can also worsen people\u2019s mental and physical health \u2013 for example, by forcing them to cut back on spending on the very things that keep them healthy,\u201d Evans said.<\/p>\n

While the report indicates that people with CF face financial challenges due to their disease, it also highlights \u201cthe great efforts that those with CF make in order to keep themselves as healthy as possible,\u201d according to researchers.<\/p>\n

\u201cThis comes at a significant financial cost, but many consider it a price worth paying to improve their quality of life,\u201d the team wrote.<\/p>\n

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

\u201cThe rising cost of living and increasing inadequacy of incomes \u2026 poses a substantial challenge in the coming months and years,\u201d the researchers concluded. \u201cWhile people with CF are appreciative of any help that they get, more is almost certainly needed.\u201d<\/p>\n

\u201cI\u2019ve just had the flu, and needed to keep the house warm which meant my gas meter was eating all my wages,\u201d said Shane, an adult with CF. \u201cI\u2019ve had to dip into my emergency fund more than once recently. I can\u2019t put a price on my health but with these price hikes I feel like I\u2019m having [to do so].\u201d<\/p>\n<\/div>\n