A Mother's $52,000 Question: Why Is Access to Treatment So Complicated? 

For families managing chronic conditions, getting the treatment a doctor recommends can involve far more than scheduling an appointment. Insurance approvals, prior authorization requirements and confusing claims can create uncertainty at every step. In this first-person account, Arthritis Foundation volunteer Advocate and Utah State Advocacy Chair Candace Rond shares her family's experience navigating the healthcare system while trying to ensure her daughter receives the treatment she needs. 

This is what healthcare looks like in America. 

My daughter has juvenile idiopathic arthritis (JIA) and, more recently, inflammatory bowel disease (undifferentiated). Recently, her doctors told us it was time to switch medications.  

Unfortunately, our family knows this process well. The doctor’s office communicates with insurance. Prior authorization is submitted. We wait. Paperwork goes back and forth. We wait some more.  

Then I finally get the call: “The medication has been approved.”  

Great. We schedule the infusion. My daughter receives the medication she needs and we move forward. Except then I checked our insurance claims. 

$52,000. For ONE infusion. 

I understand that the claim is still processing. I understand that $52,000 may not ultimately be what the insurance company pays, and it may not be what our family owes. But that is exactly the problem: I have absolutely no idea what we will owe.  

So I called the insurance company.  

“How much will my out-of-pocket responsibility be?” They couldn't tell me until the claim finishes processing. 

“Can I speak with a care coordinator or someone who can help me understand this?” 

No. 

I was essentially told that I just have to wait and see. And I cannot stop thinking about how absurd this would be in almost any other industry. 

If I were making a $52,000 purchase, there would be people involved every step of the way. If I were buying a car, I would know the price before I drove it off the lot. If I were taking out a $52,000 loan, a bank would walk me through the terms, interest rate, monthly payment and exactly what I was financially committing to. If I were buying a house, I would receive pages and pages of disclosures before signing anything. There would be estimates. There would be contracts. There would be people whose job it was to explain the financial implications of the decision I was making. 

Yet when it comes to giving my daughter medication she needs for serious chronic illnesses, somehow the answer is: “We don't know. You'll have to wait and see.” How is that acceptable? 

As I sit here writing this, my daughter is receiving another infusion. I assume another claim somewhere around $52,000 will follow. That means nearly $104,000 in billed charges for two infusions. We are approaching numbers that, in many places, could represent the cost of a home. And I still don't know what my family will actually be responsible for paying. 

This isn't a luxury purchase. 

This isn't something we decided to splurge on. 

This is medication my child needs. 

Families raising medically complex children already spend countless hours coordinating appointments, medications, specialists, labs, procedures, pharmacies, prior authorizations, appeals and insurance. 

We are parents. We are caregivers. We are advocates. And somehow, we are also expected to become insurance experts and financial risk managers — while simultaneously caring for a sick child. 

I am incredibly grateful that medications like this exist. I am grateful for the doctors and nurses caring for my daughter. But access to lifesaving and life-changing treatment shouldn't come with a financial mystery attached to it. 

Approval is not transparency. 

Being told a medication is “approved” should not mean a family agrees to an unknown financial obligation and finds out the price afterward. Patients and families deserve to know what treatment will cost them before the treatment happens. They deserve someone who can help them navigate the process. They deserve transparency. And they deserve better than: “Wait and see.”  

This is healthcare in America. This is what it looks like behind the scenes to raise a medically complex child. And for families like mine, this isn't a hypothetical policy discussion. 

This is our life. 

No patient or family should have to navigate unnecessary barriers and financial uncertainty to access medically necessary treatment. Experiences like this underscore why the Arthritis Foundation advocates for policies that put patients first and help ensure people can get and stay on the treatments they need. Learn more about how we're working to improve access to care and treatment.