When $100 keeps me from receiving financial medical assistance
An SSDI adjustment left me just out of reach of the help I desperately need
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Because of my cystic fibrosis (CF) and double-lung transplant, I receive Social Security Disability Insurance (SSDI). When I got my statement last month, my stomach dropped. With the cost-of-living adjustment, my monthly benefit had increased slightly. Sounds like good news, right? However, that increase pushed me just over the income limit for a medication assistance program I desperately need. I’m now roughly $100 beyond qualifying for help.
Here’s the part that makes me want to scream: When these programs calculate my “income,” they’re looking at my gross SSDI payment, the full amount before any deductions are made. They don’t see the amount automatically deducted for Medicare Part B each month. They don’t count the additional out-of-pocket cost I pay for supplemental insurance because Medicare doesn’t cover everything a transplant and CF patient needs. They don’t factor in my housing costs, utilities, or the fact that I still need to eat.
They see a number on paper. I see the small amount left after insurance premiums, which somehow needs to fund my life and my complex medical reality. But according to their math, I make too much money to need help.
Most financial assistance programs, whether they’re run by pharmaceutical companies, nonprofits, or foundations, use your modified adjusted gross income to determine eligibility. For those of us on SSDI, that means most programs look at our full disability payment before any deductions.
The system treats my gross income as if it’s money I have access to. But a good amount of it goes directly to healthcare coverage before I can even think about medication copays, housing costs, or groceries.
The cruelty is in the precision. If I made significantly more, I’d be able to afford my medications. If I made less, I’d qualify for help. But being “just over” puts me in a financial no-man’s-land where I’m expected to manage on my own, while still living well below what most people would consider a livable income.
Navigating an impossible system
If you’re stuck in this impossible middle like I am, I’ve learned that you can appeal with documentation, look for state-specific programs, check eligibility annually, talk to your transplant center social worker, check out the Patient Advocate Foundation‘s programs, and itemize medical expenses on your taxes.
The real issue is that financial assistance programs are designed as if healthcare costs are optional or variable expenses, like entertainment or dining out. For those of us with chronic, complex medical conditions, insurance premiums aren’t discretionary. They are necessary to survival.
When a program says “you make this much,” they’re treating the $200 legally required to pay for Medicare Part B as if it were money I’ve chosen to spend. As if I could just not have health insurance and use that money for groceries instead.
I believe a more humane system would account for mandatory medical expenses before determining “available income.” As an example, it would recognize that a $1,700 SSDI payment minus $350 in required health insurance premiums leaves someone with $1,350, not $1,700, to live on.
If you’re reading this and feeling that same sinking desperation I felt when I realized I was just over the limit, I want you to know that you’re not imagining how impossible this is. The system really is broken.
Being financially penalized for a cost-of-living adjustment that was meant to help keep up with inflation is absurd. Being told we make “too much” to need help when we’re barely covering housing and medication is frightening and cruel. And being expected to navigate all of this while managing CF, a lung transplant, and everything else we deal with daily? It’s unsustainable.
I don’t have a perfect solution. I wish I did. There are many wonderful assistance programs out there, but it can be frustrating and discouraging to be on the verge of qualifying. The only options I have found are to document everything, appeal when you can, and know that it’s not a personal failing. The math literally doesn’t work, and that’s not on us.
We are surviving CF. We are surviving transplant. Somehow, we will navigate and get through this, too. But we shouldn’t have to.
If you’ve found programs or workarounds for the gross income problem, please share them with the CF community in the comments below. We need each other’s knowledge now more than ever. Because being just over the limit shouldn’t mean falling through the cracks.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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