Is ageism in healthcare playing a role in my insurance battle?

I’ve always liked to think that age is just a number. Being older doesn’t mean you have less value, and being younger doesn’t mean you lack life experience. Our society seems to place more value on youth, but in the rare and chronic disease world, I’ve learned that being young has its disadvantages. So does ageism play a role in medical interactions and quality of healthcare?

Sadly, the saga of transferring my medical insurance after moving to another state is still ongoing. I thought it had been settled last week, until I tried to fill prescriptions today for my rare disease, atypical hemolytic uremic syndrome (aHUS).

I received a text message that the medications were ready, but I was being charged their full price (over $200 for just two medications). I haven’t received my new insurance cards, so I called the company to see if I could get my new member ID number. However, I was told that my application to transfer my Medicare coverage to Florida was denied because my Medicaid information wasn’t valid.

In my last column, I talked about the advantages of dual enrollment (being enrolled in both Medicare and Medicaid). But I was told that, in Florida, because my monthly income exceeds $180, I would receive Medicaid only conditionally each month — if my out-of-pocket medical expenses exceed $1,500. Due to the expensive medication I need for aHUS, I’ll always exceed this number. But I’ll still need to submit my medical bills every single month.

Recommended Reading

June 6, 2024 by Shalana Jordan

Grappling with the cost of healthcare with a rare disease

So I called my local office of Florida’s Department of Children and Families (DCF) to see what I could do. This conditional Medicaid coverage puts me in danger of losing my dual enrollment prescription assistance, free gym membership, utilities assistance, and more. Without it, I can’t afford the $200 worth of blood pressure medications I need today or the $27,000 Soliris (eculizumab) infusion I’ll need in two days. (Medicare covers 80% of those costs, and Medicaid covers the rest, but at the moment I have neither.)

Thankfully, the DCF representative I spoke with was very helpful. He reviewed my file and quickly noticed not one, but two major issues: First, my Medicare information was never entered into their system. Second, my income was listed as Supplemental Security Income (SSI) rather than Social Security Disability Insurance (SSDI).

These are huge mistakes, and they’re the type of issue I deal with often. I’m only 41 years old and was diagnosed with aHUS at 36. I’m almost always the youngest person at the infusion centers where I receive Soliris. I always get strange looks from the older patients when I sign in, or from the pharmacist when I’m picking up my medicine. I’ve even been asked who I’m there to pick up — the assumption being that I’m not a patient.

And I’m 24 years younger than the age (65) at which most people qualify for Medicare. So when I tell someone my Medicare information, they usually ask, “Do you mean Medicaid?” I have to explain, “No, Medicare is my primary coverage and Medicaid is my secondary.” I’ve also had to correct people that I have SSDI, not SSI.

While I’m incredibly grateful to have SSDI, it’s still a limited fixed income and not enough to cover most people’s living expenses. As a result, I typically qualify for many forms of county or state assistance. So it seems odd to me that my Medicaid would be conditional.

Since my move, I’ve been told multiple times that my income is too high for me to qualify for Medicaid. But the DCF representative I spoke with said that, because there are four people in my household, my income cap for Medicaid is over $3,200. This is well above my disability income, meaning I should qualify.

One would think that being young is great. But my young age seems to lead to awkward conversations and inconsistencies in my healthcare. I’ll have to stay on top of this because I can’t get my blood pressure medication until my coverage is sorted out. Alas, the insurance saga continues, so I’ll need to mine the depths of my patience.

Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.