No one should be forced into rationing healthcare, yet it happens often
We shouldn't have to choose between medication and our basic needs
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Those of us with rare conditions like IgG4-related disease often talk about the struggle to access affordable and equitable healthcare, but what happens after we temporarily overcome those hurdles? I say “temporarily” because, as many of us know, the obstacles never truly end.
We’re constantly forced to jump through bureaucratic hoops by enduring repeated prior authorizations, denials, appeals, step therapies, and abrupt changes in doctors, pharmacies, or insurance carriers that restart the exhausting cycle.
I’ve changed health insurance policies multiple times in search of one that covers most of my treatments and appointments. Each change is time-consuming, stress-inducing, and requires exhausting research and mental labor to compare the endless details and fine print of each plan. Even after all that, it’s common to discover that some aspects of my treatment plan aren’t covered, forcing yet more difficult choices. And I still face steep deductibles and copays. My monthly premium is over $250, even after government aid. Without it, the cost would be closer to $700 a month.
I currently see between 16 and 18 specialists — not including their physician assistants. Three of them don’t accept insurance at all, charging between $300 and $700 per visit.
Most of my regular medications are covered at the pharmacy, but I still pay $60 to $80 a month for them. I also have three major recurring treatments that cost tens or even hundreds of thousands of dollars. Insurance and copay assistance programs help with much of the cost, but I am still left with significant out-of-pocket bills, not to mention the deductibles — the cherry on top!
The cost of rent, utilities, groceries, and transportation is burdensome enough, but for patients like me, these monthly expenses are often doubled by relentless medical bills. As our health deteriorates, many of us find ourselves unable to work and struggling to keep up with these financial challenges, often alone.
If your condition is rare, invisible, or hard to diagnose, qualifying for government aid or disability support becomes an uphill battle. Many of us are left shouldering not only basic living costs but also thousands of dollars in healthcare expenses each month. How can we survive under these circumstances, especially if we are ill and unable to work?
Sometimes, the choices we face are as stark as deciding whether to breathe freely or ration breaths due to a limited oxygen supply.
Healthcare rationing is an unacceptable reality
For patients like me with rare and chronic diseases, this kind of rationing is a constant reality. Our stories are not as uncommon as you might think.
I often have to postpone or cancel doctor appointments, procedures, or medications, simply because I can’t afford them all. This can lead to ongoing illness, progressive organ damage or failure, and even cancer. Doctors sometimes question why I didn’t seek help sooner, and I must admit, embarrassingly, that financial realities force me to choose one organ or medication over another.
Nobody should have to live like this, yet here we are. I’m grateful to have a roof over my head and food to eat, but the stress of living paycheck to paycheck, coupled with having to ration essentials, only worsens my health and keeps remission at bay.
We need to rally together and speak up against these injustices. If you have a friend or loved one facing health battles, ask them how they are managing, not just how they are doing. That small shift in language can make all the difference. Thoughtful wording can be a powerful comfort when speaking to patients.
Most of us would admit that we’re not managing well. You don’t need to offer financial support. Sometimes, something as simple as offering a ride to a medical appointment or treatment can be an enormous help.
Many of us must change care teams or miss appointments altogether because of distance or lack of transportation, which can lead to seeing doctors unfamiliar with our conditions and receiving subpar care.
No one should be forced to choose between their health and their survival. By supporting each other and speaking out, we not only shine a light on these everyday challenges but also drive the urgent call for systemic change. Now more than ever, legislative advocacy is essential. Along with other patients, I have joined Infusion Access Foundation’s legislative advocacy team to push for policy changes that benefit our communities.
Lending our voices as patients and caregivers to this cause, no matter how small the step may feel, is a powerful way to push for progress. Together, we can work toward a future where all patients, regardless of their background or diagnosis, have a real chance at a healthier, more sustainable life.
Note: IgG4-RD News 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 IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.
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