Going to see a health care provider is often a frustrating and demeaning experience for people of color, as well as those who are LGBTQ or have disabilities, according to a preliminary report by the California Pan-Ethnic Health Network.
The health advocacy group collected testimony from dozens of health care consumers, including Asian and Latino immigrants in Southern California, Native American residents in Sacramento, LGBTQ individuals in Ventura County, black women in Los Angeles, and people with disabilities in the Bay Area.
While their backgrounds and circumstances varied widely, the stories they told about their health care experiences were similar, said Kiran Savage-Sangwan, executive director of the Pan-Ethnic Health Network. Across race, culture, circumstances and region, people struggled to understand the health care system, obtain timely appointments, find caregivers and facilities sensitive to their needs, and afford medical costs, the report found.
“There are differences between the populations, but there are a lot of common themes,” said Savage-Sangwan. “We continue to hear a lot about barriers to accessing care even when you have insurance. Most of the people we talked to are insured—many through Medi-Cal, others through employer-sponsored health care—but they continue to face difficulties.”
Six partner organizations representing different minority groups collaborated with the nonprofit to hold focus groups across the state during July and August. The goal was to find out what diverse communities think about their health care, in order to figure out ways to make the system better.
Heng Lam Foong organized a focus group on behalf of Asian Americans Advancing Justice in Los Angeles that included people of Vietnamese, Filipino, Chinese, Thai, Korean, Nicaraguan and Guatemalan descent. Some were first-generation immigrants, others were born in the United States. Some were undocumented, some had green cards or were citizens.
“Generally what we heard from everyone … is that the health system is confusing,” she said. “And there are different levels of access for individuals depending on whether you have health insurance, or if you’re on government-sponsored insurance.” Those who reported the most difficulty accessing health care had coverage through county-managed plans, such as My Health LA or Healthy San Francisco, she said.
Several people in the focus group complained of long wait times to get an appointment. Then when they arrived at the doctor’s office, they often also spent a long time in the waiting room. One man spoke about how his Vietnamese mother waits two to four hours to see a provider at a clinic where the doctor speaks her language. An uninsured immigrant woman said she had to line up at 3 a.m. to get her tooth extracted at a practice clinic for dental students.
Language barriers were another common problem reported by focus group participants, Lam Foong said. People described not receiving adequate translation services and being asked to sign stacks of medical documents they didn’t understand. One man said he regularly had to miss work to interpret for his grandmother at the doctor’s office because the translator on staff didn’t speak her language fluently, Lam Foong recounted.
People with disabilities who participated in a focus group also reported inadequate and insensitive care, said Silvia Yee, senior staff attorney with Disability Rights Education and Defense Fund in Berkeley. Yee said people with disabilities are often disregarded when it comes to studies on understanding health care disparities, yet they are routinely discriminated against.
Challenges for people with disabilities include obtaining routine medical care that’s accessible to them. Despite improvements in recent years, one study found that less than 20 percent of doctor’s offices in California had scales and examination tables accessible to people in wheelchairs.
Race and sexuality can compound the problems that people with disabilities face in the health care system, Yee added. An African American man in the focus group who suffers from hearing and vision loss recounted how staff at a medical clinic mistook his disabilities as a sign of substance abuse. He went to the clinic seeking help for a food allergy, but workers kept asking him if he used illegal drugs.
In another instance, a non-gender conforming person in a wheelchair described struggling to get advice on STD testing because the doctor didn’t believe a disabled person could have a sex life, Yee recounted.
To improve health care for people from diverse backgrounds, the state needs to do a better job of collecting and measuring demographic data on race, ethnicity, sexual orientation, gender identity, disability and language, Savage-Sangwan said. Additionally, consumer health care protections that are already on the books, such as the right to an interpreter, need to be better enforced, she said.
“I think the broader question is, what does the health care system really need to look like to be equitable, so that consumers have an opportunity to have good health?” she said. “I think that’s where we all need to do a lot of thinking together, and particularly bring the voices of consumers to the forefront of that conversation.”