Growing up, Beyssa didn’t know that bleeding profusely through her nose for three hours was probably the first flare up of her multiple sclerosis (MS), a degenerative chronic disease of the central nervous system that affects the brain and the spinal cord. It damages the myelin sheath, which protects nerve cells, and disrupts the messages that travel between the brain and body. It can manifest with multiple and different symptoms in each person. She learned about this condition many years later as an adult.

“Growing up having medical insurance has always been a luxury in my immigrant family. There were many times where we either paid our medical bills, or paid what we owed to survive”, shared Beyssa. 

Not only did she learn about having MS as an adult, but she also learned about having autism after she enrolled in college. 

“When I reached college, it was affirmed to me what I secretly suspected of being neurodiverse. Finally at college, I was able to start receiving some of the services I needed. With the proper accommodations, I graduated from Florida International University, summa cum laude, was awarded the Excellence in Global Learning Medallion and the Excellence in Civic Engagement Medallion of Distinction, was nominated as a Truman scholar. I graduated as 1 of 3 students acknowledged at commencement as a World’s Ahead Scholar. At FIU being named as a Worlds Ahead Graduate is the highest distinction and honor a student can receive. The award is given for students who graduates exhibit outstanding perseverance, intelligence and personal strength during their time at FIU. President Rosenberg shared my experiences as a person with disability who also had a son diagnosed with autism at an early age persevering and graduation with distinction.”

Beyssa found herself raising her son, who was non-verbal in his early years, alone. While suffering through regular MS flare-ups, she had to stop working to focus on raising her son and continuing her studies.

Beyssa depended on expensive medical care in order to thrive. “While I was growing up, I frequently expressed that I was having medical challenges but we couldn’t afford to go to the hospital,” Beyssa shared. 

Beyssa attributes living with a chronic illness to activating her spiritual path. She became a Buddhist when she was 20 years old, and through consistent spiritual practice she has been able to manage some of the MS symptoms she experiences. After graduating from college, she completed her masters of Divinity and volunteered while completing her clinical pastoral education at a local hospital in South Florida. 

Beyssa has depended on Medicaid for most of her life, but an inexplicable failure in the system left her without coverage when she needed it most. 

“While completing an internship at a local congregation I lost my eyesight. I took an Uber to Memorial Hospital and asked the driver to let the staff know I couldn’t see; I was put on a wheelchair and got admitted. They did a spinal tap and they sent me to get an MRI. They found three active lesions in my brain in the areas for the eyes and a total of 25 lesions in my brain. Half of the neurology team came to see me as it was a shock to them to see so many lesions in a brain. They expressed, “This is unbelievable, you have over 25 lesions this means you probably have had MS your whole life. When they started telling me all the symptoms for MS it gave clarity to what I’ve been navigating without support or treatment”.

Back home after her trip to the hospital, Beyssa received a bill for $110,000. Yet despite the impossibility of paying off this debt, she had no choice but to continue seeking essential care. She returned to the hospital regularly for an infusion that she needed every 28 days. Eventually, her bills mounted to $580,000. 

Beyssa is by nature, and by necessity, a skilled advocate. She spent two months calling her insurance company, Florida’s Medicaid agency, and even going in person to the local office of the Department of Children and Families. 

“When I read that figure, I would turn cold; my stomach sunk because in my mind I was thinking, how am I going to resolve that”, she stated. 

Beyssa got to work advocating and was able to demonstrate that some of her care should have been billed to her insurer, not to her. While she was able to reduce her bill to $134,000, she remained unable to pay that enormous sum. 

Unwilling to give up, Beyssa found Dollar For, a national organization that fights medical debt by helping patients to access charity care. 

“I cried tears of joy, tears of relief but also tears of sadness because not everybody is able to do this. Not every single person has the energy, the emotional capacity, the knowledge, the language. So many other people are trapped in this cycle of suffering. It bothered me how cynical they were; yes, it’s the system but all of these different players that are part of the system are protecting and participating. If you have a chronic health condition or disability, you are being forced into a cycle of poverty. The moment I earn income, I [lose my Medicaid and] can’t afford my medicine, my treatments, so I volunteer or work pro bono because other people need to have the support to fight the system”, she concluded.

Close to 100 million people in the U.S. have medical debt, and most cases of bankruptcy are due to medical debt. One essential step to limiting medical debt in Florida is for the state to expand Medicaid. To learn more, see here.