September 22, 2019 ⋅ 12:20 P.M ⋅ Guadalupe Sandoval
When we think about people who don’t have access to healthcare services, our minds often wander to residents in other countries. Nonetheless, many people within the United States don’t have proper access to healthcare and medical services. Almost “20% of adults (more than 40 million) don’t have access to or can’t afford healthcare” [1]. In fact, 21.5% of LA residents were uninsured by 2014 according to The Open Data Network [2]. Neris and his family are just one out of many that are part of this unjust reality.
On June of 2019, Speak Out for Surgery conducted an interview with Neris and his wife Marta to learn about his experience living with untreated cataracts, and the impact it has had on their family.
Neris and Marta have been together for over 35 years. They met shortly after immigrating to the United States for a better life. Marta had been going through a period of grief after the loss of her mother. Due to her recent migration, she couldn’t attend her mother’s funeral, which was really difficult for her. Neris served as a pillar of support through challenging times. Now she is doing her best to be as supportive to Neris as he was to her.
The problem arose for the first time 10 years ago, when Neris went for a routine visit to the doctor. The doctor told him he had a cloud in his eye and asked Neris if it bothered him. Since Neris said no, he was told to hold off on treatment until it became an issue.
About four years ago, the cloud in his eye started to trouble him, but his family did not have a stable source of income. They found that they “… always [had] to spend money on something else.”
In fact, Neris and Marta still don’t have steady jobs. Neris is the main provider for his family, but he works agency jobs that provide very variable working hours and time frames. A job can last as little as two weeks or even a few days. And due to his current condition with cataracts, his work opportunities are even more limited.
While Neris is concerned about his role as the main provider for the family, Marta is even more concerned about his safety. “Your eyes are everything for you. Right?” she emphasized. Now that his condition is affecting his eyesight, Marta is beginning to worry about him going off to work. Although his vision is starting to interfere with his driving ability, Neris often needs to drive to reach jobs in areas where public transportation is not very accessible. “I always hope he’s okay. [That] he’s going to get there [safely],” she says.
Two years ago, she dragged him to the doctor to try to get some help for his condition. Due to language disparities, they were unable to get a proper diagnosis, but they were given an estimate for the cost of the surgery. Upon hearing the price, which was a total of $4,000, Neris knew his family couldn’t afford it.
“He told me ‘No, we can’t afford it.’ So, we stayed like that,” Marta recalled sullenly.
Neris expressed that “[his] family has become more aware of the fact that [he] can’t see.” Surgery scares him, but “if I need it I will get it,” he assures. Neris has always been healthy and has no other health problems. “He is pretty healthy! He’s always at the gym!” Marta exclaims.
We asked why they believed obtaining a proper diagnosis and health care was such a difficult process. Both Marta and Neris expressed that standard check-ups at the doctor’s office seemed detached and impersonal.
“It’s like blood test, [then] result, [next the] bill and that’s it. Doctors don’t [tell] me anything. They call me only to get 100% on those follow up questions,” she said frustratedly referring to the patient surveys we all get after a doctor’s visit.
I got the sense from their body language that they were trying to express how the personnel didn't seem to take their concerns seriously, especially when things such as blood tests didn't come up with any abnormalities.
For Marta and Neris, this really comes down to a lack of communication which is primarily a result of the language barrier they have with their doctors. When we asked Marta whether she asked any questions she replied by saying: “I didn’t know I could. I thought it was just a session where I was told the results.”
In Marta and Neris’s case, they felt like their concerns weren’t being taken as seriously as they believed them to be. Most importantly, they felt like their visits were made in vain.
After the interview, our team of students began looking for resources to mediate some of the barriers Neris and Marta are facing in seeking care. Starting with insurance, government programs such as MediCare only cover cataract surgery for people 65 and older. With Neris already experiencing challenges with his vision at 55 years old, it is unlikely that he will be able to manage his condition without surgical intervention for another 10 years. Meanwhile, private insurance companies have payment plans that will be difficult for Neris and Marta to keep up with, given their unstable income.
If Neris did have even a basic insurance plan, he would be disqualified from receiving care through many nonprofits that receive funding only for uninsured individuals. Other organizations without such restrictions are often unable to offer services outside certain residential areas or have such long waitlists that they cannot accept more patients. For instance, when we tried to contact Mission Cataract USA, we learned they only provide services to residents of Orange County in local areas, and there is a long waiting list for the organizations that cooperate with them in Northern California. Transportation to Northern California was also an issue when we tried to explore that option. The system is really messy if you have a surgical condition and need help - more often than not you don't qualify based on their restrictions. And if you do, there can be long wait times.
Between all the rules and regulations in seeking surgical care through either insurance or nonprofit organizations, it is no surprise that the process has been so difficult for Neris and Marta.
As of right now, the team at Speak Out for Surgery has connected Neris to the nonprofit organization Eyecare America that helps uninsured individuals get connected to ophthalmologists free of charge. The goal is to acquire an official diagnosis and cost estimate that can be used to pursue financial aid or contact physicians for surgery. In helping Neris and his family navigate through these alternate routes, we hope that he can get the care he needs to live a comfortable life.
References:
About the Writer
Guadalupe Sandoval is an undergraduate student at University of California - Los Angeles and is the Writing Director for Speak Out for Surgery.