June 6, 2019 at 12:07 pm #98714bglassModerator
Welcome to our community.
Financial assistance programs for rare cancers are lamentably rare. Just over a year ago I contacted about a dozen of the cancer financial assistance program organizations and at that time, none of the groups I contacted had funding for cholangiocarcinoma. There are a few ideas however you might consider trying:
Look for financial assistance programs for treatment components. I have seen references to programs for pain management and neutropenia (low white blood cell counts due to treatment), for example.
Look at the company websites for individual drugs to see if they offer patient assistance programs.
Consider finding programs that offer other types of financial support, such as transportation, childcare or lodging, if you are bearing these types of costs as part of your treatment. Some of these may be local in your community.
If you are being treated in a hospital setting, you may wish to reach out to its financial office to see if it can help in any way.
Don’t forget that in some cases medical costs can be deducted from federal income taxes if you itemize. Fewer of us are itemizing now with the new tax law, but if you have toxically high cancer treatment costs, this avenue may offer some relief. If you think you might be able to itemize, take a look at the IRS tax booklet on medical expenses to be sure you are saving receipts for every last item that is eligible (e.g., parking receipts).
Finally, it is worth really scrutinizing your health insurance policy to see if there are ways to get copay costs down. As an example from my own experience, the scans I was having every few months at my oncologist’s hospital radiology department were being billed at about $6500 and my copay was about $1000 after deductible. I switched to a less costly insurance that only covers outpatient scans at a non-hospital free-standing imaging center. This change forced me to do research into which imaging centers in my area had comparably sophisticated scanning equipment, were on the same patient portal as my oncologist and were covered by my insurance. I found the charges at the free-standing centers to be a lot lower and asked my doctor to write the orders for scans accordingly. After consultation with my doctors, I now have my scans at a center about 40 minutes away from home, and I like the center and its radiology folks very much. My last scan was billed at about $1100 with a correspondingly lower copay ($60 after deductible). It did take a day’s research, doing spreadsheets and phone calls to verify scanning equipment to get to a better place cost-wise. I cringe thinking how much I could have saved if I had only thought to investigate earlier how to lower my scan costs.
I hope this is helpful. If any board members have found creative ways to lower the financial burden of their medical treatment, please add them to this chain.
Regards, MaryJune 6, 2019 at 7:56 am #98713Katie7Participant
Hi there – I am trying to find resources to assist with financial support of copays and medications that are adding up. A lot of the organization’s I’ve seen allow for grants for specific cancers/diseases, but with Bile Duct cancer being so rare, I haven’t found anything that can assist with this. Our family does not fall within low income guidelines, but money is very tight with 3 kids and college expenses. Please let me know if you’ve heard of any organizations we’d be able to look at! Thanks so much in advance.
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