The high medical costs that accompany Cushing’s disease

Chronic illness isn’t just tiring; it’s expensive. Medications, doctor appointments, pain remedies — all of it adds up, and quickly. In the United States, the average direct cost of healthcare for a person with chronic illness is $6,032 annually. That number is five times greater than it is for people without a chronic disease, according to a 2022 article in LifeSciencesIntelligence.

That’s because many chronically ill people face limitations in the workforce, such as diminished physical abilities or bias. A lower income can make it difficult to cover rent, food, and livelihood, let alone medical costs.

Following is a breakdown of my own health expenses as someone with Cushing’s disease:

Medications and supplements

Once a month, my husband and I visit a few pharmacies to update all of my medications and supplements. We try to find the best possible price, and we keep our eyes out for cheaper options.

My Cushing’s medications are covered by my health insurance, and I thank the universe for that because I wouldn’t be able to afford them otherwise. My Mounjaro (tirzepatide) alone would’ve been about $1,500 a box.

Currently, I pay $223.50 a month for my medications and supplements. Following are the approximate costs per month for each:

Ketoconazole: $83.50
Mounjaro: $15
Spironolactone: $20
Vitamin D: $15
N-acetyl cysteine, or NAC: $20
Milk thistle: $15
Vitamin E: $16
Resveratrol: $20
Fish oil: $9
Iron: $10

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Doctor appointments and testing

I have an entire team of doctors in my corner who almost feel like family at this point. I meet with my Cushing’s specialist, primary doctor, and gynecologist every three months and my fertility specialist monthly.

These appointments often involve testing. Every year I have at least two pituitary-based MRIs, three to six ultrasounds of my ovaries, and a minimum of 12 blood draws to check on my hormone levels, kidney levels, liver levels, and general well-being. On average, these appointments cost me about $198 per month, or about $2,380 annually, with a breakdown below:

Cushing’s specialist appointment: $150 per visit
Primary doctor appointment: $30 per visit
Fertility specialist appointment: $50 per visit
Gynecologist appointment: $30 per visit
Ultrasounds: $50 per test
MRIs: $200 per scan
Bloodwork: $20 per draw

The rest

There are a lot of day-to-day extras involved in having a chronic illness. I’m in talk therapy for medical post-traumatic stress disorder and to help me as I undergo fertility treatments and related surgeries. I started therapy in 2018, when I first began to feel sick. The sessions now cost me $400 per month, which is the lowest price I could get.

I also use some remedies that help with my Cushing’s symptoms. For example, I purchase hair oils to combat hair loss, alcohol swabs to combat nausea, and over-the-counter pain medication for when I’m on the go. Let’s say all of that costs me about $40 a month.

I can’t drive currently because of my vision issues. For me, Cushing’s disease causes visual snow, halos, blurriness, peripheral vision issues, and night blindness. I also can’t walk up or down stairs, so taking the train is out of the question for me. My husband and I bought a car that we drive to most places, but when he’s not around, I have to take a Lyft. That’s at least another $50 a month.

All those costs — medicines, appointments, tests, and the extras — add up to about $912 a month, or close to $11,000 annually. I do want to note that my expenses are higher in years when I needed surgery to remove a pituitary tumor or a new mobility aid. My cane was about $50, though my wheelchair was covered by insurance. I’m not sure how much my next surgery might cost, but the last one was $8,000 out of pocket.

Having a chronic illness can be expensive, and I’m lucky to not only be employed, but also have my partner’s support. Still, financial strain only adds to the stress of living with an illness, and it’s something our community doesn’t talk about enough.

You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease 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 Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.