Kharsang is 14 years old from rural Nepal and has been living with rheumatic heart disease (RHD) for several years. She used to feel regular joint pain and over time, her face and legs began to swell. After regular vomiting and difficulty breathing, Kharsang visited a health facility and was told she had a problem with her heart and needed surgery immediately. “My parents put me on a plane to Kathmandu. We spent around 30,000 Rupees (over $400),” she said. Her family does not have a lot of disposable income so they were not able to travel with her for her surgery. Kharsang currently resides in Kathmandu where she receives free education and follow-up medical treatment after her surgery.
What Kharsang’s Story Teaches Us
Rheumatic Heart Disease (RHD) is caused by strep throat infection, which progresses to rheumatic fever and can eventually become RHD if untreated. Streptococcal infections can be easily cured with penicillin if diagnosed and treated in time.
A government program in Nepal has been able to provide free cardiac services and surgery for young people living with RHD, but the cost of medication is not free. Transportation from Kharsang’s home in rural Mugu to Kathmandu is expensive, so Kharsang resides in the Gumba (a Buddhist school) close to the hospital in Kathmandu where she is educated in math and English. “I get to study here. I don’t want to go home now … I’m nearby the hospital here so there’s less hassle.” Kharsang now takes medicine twice a day and has her blood checked weekly. She is able to play with her friends, but still gets breathless walking up stairs and worries about potential complications.
During Kharsang’s operation, her surgeon Dr. Ravi Kumar Baral noticed that her infection was so widespread that he had no choice but to replace both of her heart valves. Dr. Baral also noted that in addition to her excruciating complications with RHD, she was also malnourished and had no money when she arrived to Kathmandu. As Dr. Baral explains, poverty burdens patients in low-resource settings in many ways.
Kharsang receives free care now but before being enrolled in the government program, her family had to borrow money for the medications she required, totaling 500,000 Rupees ($5,000 USD). She has not seen her family in over a year because travel to Kathmandu is too expensive for even one parent, and the debt her parents have accrued has set them back significantly. Out-of-pocket costs associated with treatment can create a vicious cycle of impoverishment.
Kharsang’s life before treatment has also been defined by stigma. “People would tell me I was lazy because I would avoid work and sleep all day. My waist would hurt. I had trouble breathing. I used to complain that the middle of my chest hurts.” Patients living with chronic diseases such as RHD are often mischaracterized by their communities. Stigma can prevent a patient from seeking care and can even impact treatment.
“I want to be a doctor, I want to do well for my siblings,” she says.