Two Months After Diagnosis and Already in the Deep End
On December 15, 2023, I sat in a hospital chair for my first Ocrevus infusion. The process took five and a half hours, which gave me plenty of time to think about the previous two months. I had moved from diagnosis to treatment at a speed that felt unreal. Adapting to fatigue, movement issues and speech glitches. I had also learned that my body sometimes moved like a tubular air dancer. Which I decided to accept it with grace and humor. And I would warn people repeatedly that I might flail without notice.
My best friend picked me up that morning and dropped me at the hospital. Another friend arrived later and stayed for several hours. She also drove me home after the appointment. My mom has been at every infusion since that day. She missed the first one because it happened right before the holidays and her retirement. She was unable to take off work and travel from Ohio to North Carolina. That trip is routine for her now. My friends, however, stepped in without hesitation. I am thankful for my amazing support system.
The Price Tag That Could Fund a Small Planet
While I sat through that first infusion, I had no idea what the bill would look like. I only knew that the medication was strong and the process was long. I would later learn that the first infusion cost $131,000. The second infusion cost $134,000. I thought the numbers would level out. They did not.
The next two infusions at Carolinas Medical Center climbed even higher. The third cost $140,403. The fourth cost $167,400. I stared at the numbers and wondered if the hospital charged by the minute. I also wondered if the chair had a secret gold lining. The care team was wonderful. The location was convenient. The price was not. Thankfully I have insurance.
Insurance Steps in and Sends Me Somewhere New
Before the fourth infusion, I received a letter from my insurance company. The letter stated that I could no longer receive Ocrevus at Carolinas Medical Center after my fourth infusion that was scheduled prior to the cutoff date at months end. The site of care was denied. The hospital staff was fantastic and helped me transfer to IVX Health. They handled the paperwork and made sure I had a smooth transition. I appreciated their kindness.
My fifth infusion took place at IVX Health. The bill arrived later. The total was $96,643.66. The treatment was the same. There are five-line items in total. The main cost being the 1 MG injection of Ocrelizumab. The only difference was the building. I understood why insurance made the change but also missed the team at Carolinas Medical Center. They had been part of my routine and part of my stability during a chaotic time.
Why the Same Infusion Cost More at Carolinas Medical Center
Once I saw the price difference between CMC and IVX Health, I wanted answers. The medication and process stayed the same. The nurses were great in both locations. I’ve since learned that hospitals use a different billing structure. They can charge a facility fee for the simple fact that the building is a hospital. IVX Health cannot do that. The difference seems small until you see the bill. Then it becomes large.
Hospitals also use outpatient hospital infusion codes. These codes cost more than the physician office codes used by IVX Health. The medication, nurses and IV pole do not change. The billing code changes everything. Those who created the codes have ever neither met a patient with a calculator or have and don’t care.
The Overhead That Turns a Chair into a Luxury Item
CMC also carries the overhead of a full hospital. The building supports emergency care, inpatient units, operating rooms, imaging, labs and a long list of departments that keep the system running. Those costs spread across every service. IVX Health does not carry that weight. It focuses on infusion care. The difference shows up in the final number.
My infusion chair at CMC supported more than my treatment. It supported the entire hospital. The chair at IVX Health supported only the infusion suite. The math becomes clear. While the experience stays positive in both places, the price does not.
What Is Broken and How Do We Fix It
I’ve thought about the difference in cost between two locations that provide the same service. I also think about the people who need treatment and cannot navigate these changes. The health system is broken but who will fix it?! People regardless of diagnosis deserve better.
I will walk into my sixth infusion on May 12, 2026. Sit in another chair. Talk with another nurse. I will think about the journey from that first long day in December 2023 and think about the people who carried me through the hardest parts. Support makes the process possible. Humor makes the process lighter. Transparency makes the process human.
And if I flail like a tubular air dancer on the way in, please mind your business. It will pass. Unless you want to know more, then you can read about that experience below in My MS Journey Series.
My MS Journey Series
- Homepage: My MS Journey
- Post #1: How My Grandma’s Legendary Fall Shaped My MS Mindset
- Post #2: Choosing MS Treatment with Humor and Panic
- Post #3: How My MS Symptoms Finally Forced Me to Listen
- Post #4: Why I Joined My First MS Research Study
- Post #5: Why I Spoke Up About NIH Funding
- Post #6: Feeling Like an Inflatable Tube Man at the Grocery Store
- Post #7: My First MRI Update Since Diagnosis: A Surprising Step Forward
- Post #8: Beat Autoimmune: The Six Lifestyle Keys That Changed My MS Journey
- Post #10: Sixth Ocrevus Infusion, New Routines, and an Unexpected Family Emergency
- Post #11: The Mono Chapter I Never Expected to Matter
- Post #12: Mean Baby by Selma Blair
- Post #13: The Night I Went Searching for Answers at an MS Patient Event
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