Voices Unheard: The True Stories of Karen Refugees in U.S. Healthcare

In the heart of America, far from the rolling hills of the Thai-Burma border, several Karen refugees faced healthcare errors that were compounded by cultural misunderstandings and language barriers. Known for their humility and simple living, the Karen people often shy away from advocating for themselves, making it challenging for them to navigate the complexities of the healthcare system. The following stories reflect both the struggles and the missed opportunities for timely medical intervention among this resilient community.

Case One: The 14-Year-Old Soccer Star

In Smyrna, Tennessee, a 13-year-old Karen boy, who had recently resettled as a refugee, began experiencing persistent leg pain. As an avid soccer player, he was told by the local cclinic that the pain was likely from playing soccer and was advised to rest.

Six months later, the pain had not subsided but had worsened. A follow-up visit revealed a grim reality: the boy had osteosarcoma, an aggressive form of bone cancer. By the time he was referred to Vanderbilt University Medical Center, the cancer had spread, necessitating the amputation of his right leg above at the thigh. Despite aggressive chemotherapy, he tragically succumbed to the illness within a few months. An earlier diagnosis likely would have offered a fighting chance for survival, highlighting the need for more thorough assessments and culturally sensitive communication from healthcare providers.

Case Two: The 19-Year-Old Survivor

In Aurora, Colorado, a 19-year-old Karen refugee noticed a growth in his throat. Upon seeking medical care, he was diagnosed with cancer and immediately started chemotherapy and radiation. However, due to language barriers, he did not receive adequate instructions on how to manage his chemotherapy regimen, leading to serious complications. He mistakenly believed the severe symptoms were normal reactions to the treatment.

After we rushed to the emergency room, it was discovered that he had been taking the medication incorrectly, putting his life at risk. As part of an intervention, we created a whiteboard system that visualized his medication regimen, numbering each medication and clearly explaining its schedule. This simple yet effective tool enabled him to manage his treatment properly, and he has since remained in remission for four years. This case underscores the importance of culturally tailored support and communication in medical care.

Case Three: The 10-Year-Old Warrior

In San Diego, California, a 10-year-old Karen girl was brought by her parents to a local clinic after they noticed a growth on her neck. The clinic staff assured them that it was not a cause for concern and did not pursue further evaluation.

Months later, as the growth persisted and her condition worsened, the family sought a referral, leading to a cancer diagnosis. She was immediately started on chemotherapy, but the initial delay in treatment allowed the cancer to spread, making her battle far more difficult. While she continues to fight bravely, her parents are haunted by the thought that earlier intervention might have spared their daughter such suffering. This case reflects the deep-seated cultural challenges that prevent Karen families from pushing for more thorough medical evaluations.

Case Four: The 55-Year-Old Mother

In Texas, a 55-year-old Karen woman, had suffered untreated urinary tract infections for over a decade while in a refugee camp. By the time she reached the U.S., she was diagnosed with advanced kidney disease and has been on dialysis for the past 6.5 years. Despite raising a 10-year-old daughter, no one informed her that dialysis is not a permanent solution and that she needed to be on a transplant list.

A team in San Diego developed a transplant plan, but the idea of being away from her daughter for three months felt unbearable. Without advocacy or clear guidance, she remains on dialysis, unsure of what the future holds. Her situation highlights the critical need for long-term care planning and patient advocacy, particularly for refugees who are unfamiliar with complex healthcare systems, and experiencing cultural and language barriers.

Case Five: The 32-Year-Old Father’s Worrying Growth

In Aurora, Illinois, a 32-year-old Karen husband and father, noticed a growth on his leg. He sought help from his primary care clinic, who reassured him that it was harmless without conducting a biopsy.

Feeling uncertain, he shared the situation with us, and we requested a photo of the growth. It appeared to be potentially malignant, prompting us to advise him to return to the clinic and request a biopsy. He followed through and is now awaiting results, grateful for the guidance that led to more proactive care. This case serves as a reminder of the critical role of advocating, especially for culturally reserved patients like the Karen.

These stories collectively highlight the urgent need for cultural competency in healthcare. The Karen people’s reluctance to advocate for themselves and the language barriers they face should not lead to life-threatening consequences. With more culturally sensitive care and effective communication, many of these outcomes could have been different.

Kevin LaChapelle is the CEO of a community health center. With a background in law enforcement and global humanitarian work, Kevin brings unique insights into refugee health, community care, and mobile health outreach. As a regular presenter for the U.S. Department of State's International Visitor Leadership Program, he shares expertise from his travels abroad with experience in refugee camps, and health care for refugee populations across the USA.