Ribulotta encourages fellow survivors to advocate for themselves

As a childhood cancer survivor, Martín Ribulotta, 31, has more doctor appointments than the average person in their 30s.

He was diagnosed with astrocytoma, a brain tumor, as an infant. He had surgery and chemotherapy at Children’s National Hospital in Washington, D.C. The cancer came back twice and was treated with surgery both times. Ribulotta has been cancer-free since 2001. 

But more than 20 years later, he still deals with health problems caused by his treatment. These are called late effects. The right side of his body is weaker than his left side. His right leg is slightly shorter than his left. Chemotherapy drugs have caused dental problems. 

Ribulotta is glad he has health insurance to cover most of his medical expenses. But making sense of the health insurance system can be quite challenging, he says. That is why he took part in the LTFU study aimed at helping childhood cancer survivors increase their health insurance knowledge and understanding.

Before the study, Ribulotta describe his level of health insurance knowledge as “basic.” The study helped shed some light on the matter.

“Health insurance in the United States truly requires ongoing and constant education,” Ribulotta says.

Fortunately, he has health insurance through his work as a user experience designer. He is also still covered by his mother’s insurance plan because he has a disability. 

Dealing with insurance and stress

“Dealing with insurance matters can be stressful. Often there are conflicts between both my insurance companies,” Ribulotta says. “Neither wants to be footed with the medical bill, even though that is their sole purpose. I also must defend my disability status for continued coverage under my mother’s insurance plan every 2 years, even though my disability is a permanent one. It can be overwhelming to deal with health insurance, especially as a childhood cancer survivor with all the follow-ups and tests we need done.”

It is important to understand your different options. These include payment plans and programs that help pay for medical care, Ribulotta says. He suggests learning as much as you can about your insurance plan. Read the Explanation of Benefits (EOB) you get in the mail after a health care visit or service.” An EOB is a statement from your health insurance plan. It describes what costs it will cover for medical care or products you have received.

“Speak with one of your insurance company’s agents if you have questions.” Ribulotta also recommends asking your social worker at your follow-up center for help with insurance-related matters.

“Advocating for yourself is an acquired skill,” Ribulotta says. “It is essential for all survivors, especially for health insurance. You’re going to run into denials at some point. Don’t be afraid to fight back. Go through the complaint process. Be firm in your language and approach but understand that it is a process. As long as your insurance is trying to work with you, be patient with them, but not too much. Insurance companies can take their sweet time.”