Abby Caughman
Healthcare is a human right. I know that is a controversial statement and one that holds a lot of gravity in our current political climate. However, what is often missing from the healthcare conversation are two things: (1) an understanding of the Medicaid and Medicare system available to individuals who can’t get employer-based insurance and (2) a personal aspect of what it is really like to rely on state/federal insurance. I am going to use the next few paragraphs to address both tenants and hopefully convince you of this truth: healthcare is a human right.
I was diagnosed with a chronic blood cancer in April 2022. It is a blood cancer that is most common in 60-year-old men. I am a 24-year-old woman. I am lucky enough to be on my parent’s health insurance until I am 26. I am terrified of what is to come.
When I was first diagnosed in South Carolina, my body did not respond the way it was supposed to. My oncologist told me that I was “outside of South Carolina’s level of care.” I had to seek medical care elsewhere, out of state. I went to the Mayo Clinic in Rochester, Minnesota.
The doctors in Minnesota saved my life. They came up with a treatment plan and I continue to follow up with my Mayo Clinic oncologist virtually every 3 months. He is the only person I trust with my cancer care- with my life.
I have since moved to Chicago, IL. I am assembling a wonderful group of doctors here that work side-by-side with my Mayo Clinic team. They both help me administer my weekly chemotherapy- medication alone that costs $70k/year. Medication that I will need to take for the rest of my life.
I will be terminated from my parent’s health insurance when I turn 26. I cannot work while fighting cancer- not when I am permanently disabled. I will have to turn to Medicaid to get health insurance. However, here is what many don’t know about Medicaid:
· With Medicaid, healthcare coverage does not cross state lines (What Is the Difference, 2023). IL Medicaid can only be used in Illinois unless for a medical emergency. I won’t be able to use Medicaid at the Mayo Clinic in Minnesota because that is “routine” even if it is lifesaving. Medicare does work nationally, but the qualifications are much stricter. Some people qualify through end stage renal disease or ALS, but most often you need work credits to qualify- something that many disabled individuals do not have (What Is the Difference, 2023).
· One in four providers in Illinois do not accept Medicaid (Hest, 2022). Which of my providers will I not be able to see? With Medicaid, individuals often do not get to choose their healthcare provider, Medicaid decides it for them. Further, the reimbursement rate is much lower for Medicaid compared to Medicare or private insurance which deters healthcare systems from accepting patients (Holgash & Heberlein, 2019). Medicare paints a different picture- only 1 in 100 doctors in IL do not accept Medicare, thus allowing patients a choice in their healthcare providers (Ochieng & Clerveau, 2023).
· Each state gets to decide Medicaid eligibility (What Is the Difference, 2023). If I am eligible in IL, that doesn’t mean I am eligible in any other state. When someone moves to a new state, they need to re-apply for that state’s Medicaid- qualifying in IL doesn’t guarantee qualifying in IN. Can you risk moving across state lines and losing health insurance?
Instead of worrying about my health, I am worried about insurance. Instead of worrying about my cancer care, I am worried about insurance. Instead of learning how to live, I am worrying about insurance.
My story is not unique. There are millions of people in the United States who are in the same situation as me- forced to go to only a handful of doctors who may or may not be qualified, cannot leave the state they are in, drip in fear of losing coverage. Further, even the process of applying for Medicaid or SSI is complicated, fear inducing, and inherently confusing.
I didn’t choose cancer. My friend didn’t choose autism, even though we do celebrate it. None of us choose disability- why should we be cut off from equal access to healthcare because of the bodies we are in? I deserve access to equitable, quality, choice-inducing healthcare even if I cannot work full time. So do my friends. So do the millions of people that I do not know. So do you.
Medicaid is a broken system. It traps people into doctors they did not get to choose and prevents them from seeking out healthcare professionals that could be lifesaving. Where would I be without the Mayo Clinic? I would likely be dead.
My life matters. Every life matters, and with this essence of value, comes the need for adequate healthcare- Medicare, not Medicaid. Healthcare is a human right. I hope you believe me.
For more stories like mine, read here:
- https://thearc.org/blog/using-medicaid-is-complicated-that-hurts-people-with-disabilities/
