Samira R. is almost 17, but her maturity and wisdom exceed that of many adults. She attributes this to growing up in a family where someone was always going to the doctor. Her mother has asthma, rheumatoid arthritis, and an aggressive form of diabetes, and Samira herself has struggled with several health conditions throughout her life.
As a child, Samira had an undiagnosed condition causing repeated urinary tract infections. “As a 4-year-old I was crying on the floor because of the crippling amounts of pain from infections, she remembers. “My intestines work in the opposite direction, and it took almost 12 years to diagnose hyper elasticity of the muscles.”
Samira also has extremely poor vision due to amblyopia (‘lazy eye’), as well as fainting spells that her cardiologist says is from standing. Samira’s experience of growing up with numerous health challenges has rendered some troubling insight: “There is widespread ableism in the South, leaving many people ashamed. And since the political climate doesn’t empower them, individuals with disabilities believe they deserve to struggle.”
The lack of affordable support from the health insurance and health care systems only reinforces this experience. Samira’s mother once had a serious diabetic episode requiring an injectable medicine. The insurance through her father’s employment would not cover the prescription. She wasn’t able to receive treatment until the drug’s manufacturer offered to pay for the medication in exchange for the right to document her results.
The family’s insurance co-pays are so high that they are forced to decide which medical needs are most urgent. Samira’s mother has a small tumor in her brain, but they cannot afford an MRI to monitor its growth. Her mother should also be receiving annual stress tests because her severe asthma has affected her heart, but they cannot afford that either. Between her mother’s health issues and her own, Samira says her father’s health is pushed to the back burner.
“I feel cheated out of my childhood,” Samira reflects. It makes her angry, but her resentment is toward the system. “Millions of Americans deal with a health care system that is making them choose between their health and [finances]; can they afford to pay the high deductibles, co-pays, and co-insurance. Many Americans with substantial healthcare needs end up in medical debt. Affordable health care should not be out of reach of any person, especially persons with disabilities, just because their healthcare needs are greater.”
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