Battles beyond a diagnosis: Health insurance creating obstacles to treatment

By Claudia Alvarez

A headshot of public health student Claudia Alvarez

I always knew my mom and I had a special connection. It kept me going during my freshman year, a time in my life when I wanted nothing more than to feel the endless comfort and sense of belonging I felt when I was with her. More importantly, it kept us going during a life-changing diagnosis and never-ending medical burden that I never let rest entirely on her shoulders.  

The morning of Oct. 2 felt more like fall than usual. I wish I could’ve stayed in that moment forever, but it ended as soon as my music stopped playing through my headphones and I looked down to a phone call from my brother. I don’t remember much, except for my dad grabbing the phone in an attempt to soothe me. He assured me that my mom would be okay, but if it wasn’t for my brother, she wouldn’t be.   

My mother was diagnosed with multiple sclerosis in my junior year of high school. She had always dealt with debilitating migraines, thyroid problems, arthritis and mobility issues. With each passing year it worsened, and nothing ever seemed to soothe the constant flare-ups. I was 16 when she received the results of a spinal tap that confirmed the diagnosis.   

 My mother had fled political persecution in Cuba, overcome poverty, a language barrier and fertility issues, and learned an entirely new way of life to build a family of her own and rescue the rest of her loved ones from back home. I always knew she’d overcome, but no one said the journey would be linear.   

The beginning of my freshman year proved a difficult time for her. The added stress and anxiety of having a child move away from home exacerbated her symptoms, but she continued to put on a brave face.   

One day, after her tri-weekly injection of Copaxone, a common medication used to combat multiple sclerosis, my mother began to feel lightheaded. She collapsed to the floor as her airway closed, and she used what little energy she had to bang on the hardwood floor to alert my little brother. He found her unconscious on her bedroom floor. She had gone into anaphylactic shock from a spontaneous allergy to Copaxone after being on the medication for more than two years.   

My brother called an ambulance, and my mother was taken to the hospital.  There, doctors ran tests and concluded that although the reaction was spontaneous, Copaxone had been doing more harm than good. Additional scans showed larger lesions in my mom’s brain and flare-ups across her spinal cord. This medication was supposed to be my mother’s saving grace, and instead, it had reverted us back to square one.   

The following months were a blur for us all. My mom was in and out of clinics for weeks on end, seeking out specialists who would take our insurance plan and see patients with chronic conditions. Every visit came with a new insecurity or level of discomfort, as my mom struggles to interact with others in a non-native language.   

It was going to take all of our family for her to overcome this, and she knew that. Together we persevered against a system that makes it difficult for individuals like my mother to improve.   

Freshman fall came and went, and eventually, I found my love for my future career in medicine and the University of Florida. My mom was feeling empowered by the opportunity to take her health into her own hands, and we had finally found a medication that could turn her prognosis around. She was prescribed Avonex, a once-weekly injection, plus 40 milligrams of a beta blocker, which would lessen her migraines and improve her quality of life. With this medication, she could expect to see longer periods between relapses and significant improvement in motor and cognitive function. She was even predicted to regain some abilities she had lost under Copaxone.   

It was finally looking up for her, until something we didn’t expect caused our progress to go stagnant. A few weeks after getting approved to start on Avonex, my mother received a letter stating that insurance would only cover 30 milligrams of her migraine beta blocker because it was considered non-essential. This began the dreaded back-and-forth between the prescribing clinic, my mom and our insurance company, Cigna Health. In the end, the company wouldn’t budge, and pharmacies wouldn’t allow my mother to pay out of pocket for the remaining cost of her accurate dose. The insurance company left us with a long and expensive mess to clean up, and as a family, we had to decide between a medication we couldn’t afford and my mother’s quality of life. After consulting with the prescribing doctor, he encouraged us to give the injection a try without the migraine medication. 

In January, it will have been two years since my mother has been on Avonex with no supportive medications. Her condition has not regressed, and she is showing improvement. She continues to be the light of my life and the strongest woman I know. However, I would be lying if I said I was not angry with a system that emphasizes profits in place of community well-being.   

Estimates show that in 2023, more than 30% of the U.S. population stopped taking their prescriptions as recommended due to higher prices, and drug shortages continue to increase these costs. These trends also predict a death toll of over 1 million in the next decade due to the lack of access to necessary medications.  

The best way for me to advocate for my mother, and those like her, is to share her story. I believe her voice and the voices of those that are vulnerable to the healthcare system should be amplified. I began contacting local representatives through calls and letters to public officials, detailing her story in hopes that they would advocate for her cause. I joined research projects and clinics, such as the UF Mobile Outreach Clinic, that advocate for health care for all and provide care for low-income communities.   

We can all think back to a time when we wish someone would’ve stood up for us. For those like my mother, their health impedes them from standing up. On days when it may seem useless or hard, stand up for those who emphasize the power of “us.” Even in the moments when it’s uncomfortable to be the only one standing, remember that there are those who would give anything to be right there next to you.   

Claudia Alvarez is a third-year public health major.  

“My public health story” essays originated from an assignment on public health storytelling for a public health messaging and dissemination course led by Brittney Dixon-Daniel, Ph.D., M.P.H., director of the Bachelor of Public Health program.