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Financial hardships and CF
In her latest column, Jennifer Bleecher explored the financial hardships that come with living with cystic fibrosis. One such example was struggling to pay for her daughter’s college tuition after a double-lung transplant.
Have you experienced any financial hardships living with CF? If so, what did you do to alleviate the situation you were in?
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4 Replies
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While I have not yet experienced financial hardship as a CF caregiver (gratefully and thankfully), I have seen my spouse with CF navigate through turbulence and trials with insurance and supplemental insurance approvals, out-of-state CF coverages, and take on additional costs related to their CFRD (on things like glucose testing machines, test strips, alcohol wipes, etc.). It is hard, but I am thankful that my spouse has the support of a wonderful team of doctors and professionals, including social workers who have gone the extra mile when needed. With that being said, being a CF caregiver requires a lot of budgeting and saving, as to ensure we can keep (even some) security funds to fall back on during emergency situations and if ever needed.
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Your spouse is definitely lucky to have such a supportive cast around him. I’m sure he is grateful for all of you.
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Yes paying for CF medications can be very expensive and stressful. I am using the co-pay assistance for years but this year, I am sure from cost of meds to Insurance co not covering as much , my co pay ran out and I am struggling to pay for the meds. Have request out for more assitance with Healthwell and others but the process is long and now without my meds for several weeks the affects are dranining and stressful.
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Healthwell has closed their grants for now. Hopefully, they’ll open up soon.
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