Tackling Ehlers-Danlos Syndrome (EDS) isn't just about managing a complex tangle of symptoms—it's also about untangling a web of financial red tape with billing, expenses and insurance partial payments and medical debt owed. As tax season rolls around, the familiar dread of sorting through a mountain of medical receipts rears its ugly head. But fear not- or not too much this year with the guidance shared in this article. We hope to arm you with the latest insights and tools to transform you from a financial novice into a savvy spreadsheet queen of your own health expense tracking trials.
Decoding the Cost of Being Bendy
Recent breakthroughs in research just published by a Penn State team of researchers and EDS community members support sheds light on just how pricey being chronically under care with flexible joints from EDS can be. Published findings in ScienceDirect this January 2025 lay bare the fiscal impacts of EDS, turning abstract numbers into startling realities:
The Price of Elasticity: Those with EDS often face medical bills that would stretch anyone’s budget, with annual expenses far outpacing those of the average Joe or Jane, often exceeding $13k annually.
Work and Insurance Woes: The flexibility that defines EDS doesn't extend to the job market or insurance coverage, often leading to precarious financial situations that require acrobatic skills to manage disability and/or accommodations to be able to keep working.
Armed with the newest research data validated by the experts, we as patients are now better equipped to lobby for more supportive policies and push for changes that make a real difference – both from our health insurers, legislators and policy makers on the sheer burden of costs of care for complexity. If you want to learn more about how to do some legislative advocacy on your own, this Advocacy 101 Toolkit post on the Bobby Jones CSF website is quite helpful in making it more doable. Especially if this topic makes you ready to call your Congressperson right now!
A Treasure Map for Tax Time
Navigating the swamp of medical receipts, (yes, it’s time to pull out those growing folders and boxes and update those numbers) and soon to be required tax form completion is no small feat even for a healthy accountant. Here's a few helpful tips to chart a course through these murky waters with some digital savvy and a bit of old-school organization:
App-tastic Expense Tracking: Consider deploying apps like Mint or Quicken as your personal financial quartermasters. These tools can help categorize and stash away your medical costs, making them easy to retrieve when the taxman calls.
A Spreadsheet to Spill Your Beans: Need a customized solution? Hoist the sails and head over to buy a copy of a pre-made template designed with the patient community in mind. Grab a copy in Google Sheets of the ultimate digital tracker we bought for than $15 and start logging your expenses like a pro.
To Itemize or Not? If you need guidance on determining what medical costs are deductible from your taxes, or if itemizing in today’s tax code is worth your while, read:
A guide from EDS Awareness, Decoding Medical Deductions: A Chronic Illness Patient’s Guide to Navigating Healthcare-Related Expenses and Taxes
Download the more expansive ebook Ten Tips to Optimize Medical Expenses
No matter what, always go by what the IRS says for Schedule A with their overarching advice, “You can deduct only the part of your medical and dental expenses that exceeds 7.5% of the amount of your adjusted gross income on Form 1040 or 1040-SR, line 11”, and seek a professional tax advisor or accountant.
With these tools in hand, you’ll be ready to face tax season head-on—no more digging through drawers for faded receipts!
Financial Flares and Lifelines
Keeping abreast of the latest policy developments in government and healthcare can help you dodge financial icebergs and catch the trade winds in your sails. Here’s the scoop on some recent headlines:
Navigating Medicare’s Murky Waters: The recent Medicare Advantage fraud debacle has stirred up quite the storm. For an in-depth exploration, anchor at this article where they expose providers being compensated for adding more diagnosis to patient records for fees.
Advocacy Ahoy! More insurers are now boarding the patient advocacy ship, recognizing these services as essential but most are unfortunately not yet covered. Very important to keep in mind: Pay attention to who is paying the patient advocate! If they work for your health insurance company, they are not working for you but instead working to keep their costs down. Look instead to hire an independent health patient advocate who has your best interest (and pocket book) in mind using directories on sources like the Alliance for Health Patient Advocates (APHA). As far as we know, Medicare does not yet reimburse for patient advocacy services, but discussions are in play and could help the new profession explode. Medicare currently offers ombudsmen or SHIP assistance programs by state for support. Learning to navigate these waters can significantly impact your journey through the healthcare system. Watch for more on this hot topic in healthcare in 2025.
Credit Where Credit’s Due: With new rules delaying the impact of medical debt on credit reports, there’s a bit more breathing room. The federal Consumer Financial Protection Bureau recently issued new regulations barring medical debts from American credit reports, enacting a major new consumer protection just days before President Joe Biden is set to leave office. Dive deeper into what this means for your financial health here.
In the world of EDS, where unpredictability is the norm, managing finances shouldn't feel like a high-wire act without a net. Equip yourself with the right tools and stay updated to keep your financial footing as secure as possible.
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