Every person in America either personally deals with our country’s healthcare system or knows someone close to them who does.
The issues our system faces are reported about on a daily basis. But beyond the data, analysis, and think pieces, what does healthcare really look like for folks across America?
Who are the faces affected by decisions made by our politicians and healthcare companies? How do their socioeconomic standing, gender, and race affect the level and type of care they receive?
Healthline got to know three vastly different individuals who spoke candidly about their experience with America’s healthcare industry.
Here are their stories.
A Somali immigrant who came to the United States at 11 years old, Haweya Farah has an intimate experience with America’s healthcare system, both as a patient and as a chronic pulmonary disease clinical specialist.
“I have an MBA in healthcare management and over a decade of experience, but most of the times when I walk into a patient’s room, the doctor or patient themselves assume I am there to take out the trash or clear their tray,” Farah says.
She’s experienced patients declining her care and asking for a white practitioner and doctors questioning why she was making notes in a patient’s chart. She’s been vocal about these issues in Minneapolis and pushes for change in the healthcare system.
In her home country, it was a struggle to maintain routine care for her family and others. But when they first arrived in America, any refugee with proper documentation — like Farah — received Medicaid.
“I came in 1996. Things were different then, and people actually liked refugees and wanted to help them. Now we live in different times, and a lot of policies have changed,” Farah says. She notes that new refugees now often have trouble getting insurance.
“In Somalia, we aren’t used to a robust healthcare system. You only go to the clinic when you are sick, if you are able. We didn’t go for regular care. My mom, she’s been [in the United States for] 20 years, and we still have to keep on top of her appointments,” Farah explains.
“Since I started working as an adult, I’ve always paid for my insurance for myself, and now my kids. It’s great benefits, but again I pay for it. It’s about $700 a month, and then I need to put away money in our health savings account to pay for the deductible,” Farah adds. She manages to cover it, but it can be a strain on her family.
Still, Farah is thankful for the quality of coverage and ability to access doctors, even if that care is sometimes biased. She explains that, despite having access to quality care, she’s struggled with aspects of being a patient of East African descent and a Black woman. Farah says that she had her own pain downplayed by doctors, like when she was only offered Tylenol to help with the pain while in labor, and finds herself continually frustrated by the things she sees and hears around her.
But she refuses to be complacent as a provider or a patient.
“I have no control over how much melanin God gave me. Just accept me. I don’t have the privilege to say that I am done advocating. I can’t put my Blackness away,” Farah says.
In his suburban Pittsburgh home, Patrick Manion Jr. reflects back on his father’s life and death. His father, Patrick Sr., died from Alzheimer’s complications in June 2018 at the age of 89.
The quick downward decline was hard for Patrick Jr. and his wife, Kara, as he began making unsafe choices in his own home. They had to make a quick choice and decided to move him into 24-hour care.
One stress they didn’t have, however, was how they were going to pay for it all.
“After a tour in the Navy, [my father] joined Steamfitters Local 449 [a union group] in Pittsburgh,” Manion Jr. says. Though Pittsburgh was a booming industrial hub with a high demand for skilled laborers, there were times when the demand for steamfitters would drop, and Patrick would be laid off for a season.
“Unemployment checks kept us going, but we took trips to the beach almost every year,” explains Manion Jr., adding his father retired at the age of 65.
Manion Sr.’s steady union job provided security for Pat and his two sisters as well as his wife. When Pat began the search for a care facility for his father, he recalls the stark difference in care based on price points.
“There were a few care facilities that were well under his budget, but we determined that they weren’t nice or attentive enough. We had the luxury of being more discerning in our choice. We could afford to place him in the nicer, more expensive option,” Manion Jr. says.
“I remember walking through the cheaper place and thinking that my father would hate it there. When we toured the more expensive placement, I just felt that my dad would enjoy it more, be more comfortable, and get much more personal attention. The place we decided to move him to had two options for his needs. He could walk around inside the facility, walk outdoors along a path that was enclosed and would keep him safe,” he says.
The Manions were also able to pay a neighbor to watch him (out of his dad’s savings and pension) before moving to the care facility.
In the end, the care facility cost $7,000 per month. Insurance covered $5,000, and his pension easily covered the gap for the 18 months he lived there before passing.
“He worked his whole life to provide for his family and himself. He earned and deserved the best care I could find for him when he needed it,” Manion Jr. says.
Owner of a behavioral therapy company, Saundra Bishop got a concussion in July 2017. She went to the emergency room and was told to rest for a few days.
“This was terrible advice, and if this had been all the resources I had, that would have been the end of it. But a friend of mine who had also had a bad concussion suggested I go to a concussion clinic,” Bishop says.
Bishop recognizes her privilege with how quickly she could access the help she needed. Her insurance, which is through the company she owns, made that possible. “I was able to go see this specialist with a copay and no referral. Our family could [also] afford the $80 a week in copays along with everything else,” she says.
Bishop was put on part-time work duty, which would’ve ruined her family if they weren’t financially stable. She notes that since she owns and manages her own company, she could navigate working part time remotely while she healed. If things weren’t so flexible, she could’ve lost her job due to the injury.
Her family of six also functions with the help of her husband, Tom, who stays home while she works. Bishop says he was a huge support through her myriad medical appointments, massages paid out of pocket for pain management, therapy to process the trauma of the accident, and personal trainer, who modified her workouts.
In addition to this, Bishop’s mother was also available to help care for their four kids, which further highlights how a solid support network is often key for many families facing medical crisis.
At one point Bishop developed severe concussion-induced depression.
“I became suicidal,” she explains. She entered a seven-week outpatient psychiatric partial hospitalization program, which her insurance covered. Bishop was also able to work remotely during this time, which allowed her and her family to weather this storm.
While Bishop is still recovering, she acknowledges how differently her life after her injury could’ve turned out had she not had the financial help.
“I am still injured, and I may have permanent damage. I am not healed yet. But it could have destroyed my life if I didn’t have money,” Bishop says.
Meg St-Esprit, M. Ed. is a freelance writer based in Pittsburgh, Pennsylvania. Meg worked in social services for a decade, and now chronicles these issues through her writing. She writes about social issues affecting individuals and families when she’s not chasing after her four children. Find more of Meg’s work here or follow her on Twitter where she mostly tweets her kids’ antics.