When Sahro Nor, 47, came to San Diego from Somalia 18 years ago, she was pregnant. When she went into labor soon after, her western delivery room felt familiar. She was a midwife and registered nurse back home.
But the delivery wasn't easy.
"They were asking me, 'What's wrong? What's wrong with you? The baby isn't coming out because everything is sewed,'" Nor said.
Like a lot of East African women who came to the United States in the 1990s, Nor was circumcised. The cultural practice removes parts of the genitals. Stitches and scar tissue narrow the birth canal. For a circumcised woman to give birth vaginally, the doctor would have to make incisions to re-establish the birth canal.
Nor's doctor had never seen a circumcised female patient.
Nor didn't speak English at the time, so she said she tried to describe the procedure she needed by pantomiming through the pain and chaos of labor. It didn't work. The baby came before the cuts were made, causing Nor a lot of pain and, eventually, permanent numbness.
Her story is just one in a catalogue of medical mishaps and nightmares refugee women in City Heights are sharing with their community. They're asking residents to sign a petition to get insurance providers to cover face-to-face translation in doctor's offices and hospitals.
Though the state requires all medical providers to offer translation, current services fall short. Most rely on special phone lines for translation, which are based out of state and offer little control over the gender (Muslim women prefer female translators) and dialect of the translator.
Even with phone services available, a slapdash approach to translation is the status quo. Providers and patients often rely on neighbors or children, who cannot legally act as interpreters in California.
Prescription labels are printed almost exclusively in English, even though the state's Board of Pharmacy offers translated labels online at no charge.
Nor and other women leading the campaign say they want to ensure their family and friends are safe when they visit a doctor. But their cause is made even more significant by its timing – on the heels of federal health care reform.
The Affordable Care Act is expected to change the face of the nation's insured population – a sea change that has the medical industry scrambling to scaffold more culturally competent care.
Health researchers at PricewaterhouseCoopers estimate one in five insured patients will be non-native English speakers once state health exchanges roll out. That's up from one in eight.
In City Heights, even the providers best-equipped to work with refugee and immigrant populations admit they need to do more.
La Maestra Community Health Center sits across the street from the East African Community and Cultural Center and a few blocks from San Diego's Little Saigon district. Signs in the facility are posted in both English and Spanish. Nearly 100 percent of the patients fall at or well below the poverty line.
To serve such a diverse neighborhood, the clinic's CEO and founder, Zara Marselian, hires from within the immigrant and refugee communities to translate and do outreach. She calls these employees "cultural liaisons."
"With the Indochinese we have the Vietnamese, the Cambodians, the Laotians. Now the Burmese are here – a lot of Burmese," Marselian said. "We have three cultural liaisons with them and that's still not enough."
The liaisons typically get training in more traditional clinic roles – in part because it helps if a translator knows about prescription drugs or insurance eligibility, but also because Marselian can't get reimbursed for translation alone.
"There are many services that we provide that do not ever get reimbursed by anyone," Marselian said. "And those are the enabling services like translation, interpretation, transportation, outreach. None of that gets reimbursed, but we do it so the community knows there are services available and then has someone to help them connect to those services."
Zuledka Wajo, 29, said that connection is important. She emigrated from Ethiopia six years ago and said language barriers breed fear in the refugee community that keeps individuals from getting the care they need.
She said refugees often put off going to the doctor because they think it will make things worse. Some of the women reported receiving the wrong medication, a misdiagnosis – even the wrong surgery – because they couldn't communicate with their doctor.
"When I came (to the United States), people told me if I go, the doctor will turn it into a big deal," Wajo said. "So I just suck it up and learn to live with it. If they don't have a really, really (bad) problem, they don't want to go because of the fear."
For Wajo, the horror story that stuck was one from her nephew. She said the 8-year-old was asked by an Oregon doctor to translate for his Amharic-speaking father, who was being told he had terminal cancer.
Wajo said she only recently worked up the nerve to be seen for a persistent rash. It appeared six years ago.
Wajo joined Nor and about 20 other women involved with the nonprofits City Heights Hope and the Mid-City Community Advocacy Network earlier this year to collect the many stories they've heard – and told – about health care in the United States. Together with Bill Oswald, a researcher hired by The California Endowment, a private health foundation investing in City Heights, they interviewed more than 200 refugee women.
Oswald said two-thirds of the women felt communication was very poor between them and their doctor.
He said a vast majority of the women speak more than one language even though they don't speak English. Many are taking English-language classes but are not yet proficient.
But whether the women are acculturating is a moot point for Oswald – he said people should think about the human cost of poor medical translation.
Almost 30 percent of the women interviewed reported guessing their medicine dosage; 10 percent threw their medication out altogether because they were afraid they would take the wrong amount or it was for the wrong ailment. Patients who didn't speak English were two times more likely to require repeat visits for the same symptoms.
"I think that puts a lot of stress on the system and there are a number of ways where the cost, while not calculated, is extremely high," Oswald said.
The financial cost could soon become more of an incentive for health care providers to patch cultural gaps. Under health care reform, hospitals can be fined for having too many unresolved cases and repeat visits.
The law will also expand cultural competency training and offer diversity grants to bring more ethnic diversity into the health care industry.
The women campaigning for better translation in City Heights are counting on one specific piece of the Affordable Care Act to help change their health care experiences.
They plan to send their petition to the board overseeing California's insurance exchange. The board members are tasked with setting regulations for participating insurance companies. The women want face-to-face translation coverage to be one of the prerequisites.
A board representative did not return a request for comment.
In the meantime, Nor sees another opportunity for change. Second-generation refugees are beginning to enter the health care industry, including her daughter, who recently graduated from UC San Diego and is planning to become a doctor.
"(A young woman in the community) she took that OB/GYN lesson and now a lot of young women who are pregnant and circumcised enjoy her," Nor said with a smile. "They say, 'Oh yeah!' So we're happy with that."
