According to Kim Johnson, a medical doctor and director of technical assistance, training, and treatment at the National Minority AIDS Council (NMAC), a former Ryan White technical assistance provider, culturally competent care involves “a relationship between patient and provider based on trust and a rapport developed over time. It does not begin with the doctor; but includes the entirety of the clinical staff, from the front door to the physician and everyone in between.”
Bradley-Springer echoes this statement, noting how a friend of hers with cancer left a primary care provider she loved, because the person at the reception desk was always rude to her. “Every person is important. That story really brings it home for me though. Support staff might think, ‘I’m the person at the front desk checking you in, I’m not important.’ But they are!”
Providers that create a hostile or stigmatizing environment for people living with and affected by HIV will ultimately alienate patients and deter them from care. “The disclosure that needs to happen around a client’s behavior and other co-factors that may impact treatment, such as substance abuse, mental health, injection drug use, and homelessness, won’t take place between patients and medical providers,” says Johnson. This lack of communication will make it nearly impossible to provide the right care, resulting in an environment where treatment is subpar.
Effectively treating patients living with HIV/AIDS involves more than asking them about their symptoms and writing prescriptions. It demands an understanding of their experiences and circumstances—their lives as a whole. As Justin Goforth, director of the medical adherence unit in the Gay Men's Health and Wellness Clinic, at Whitman-Walker Health, a Part A provider, explains, “I have to be nonjudgmental and affirming with my patients, and learn what their priorities are. I have to understand what’s keeping them out of care and implement solutions. That’s being culturally competent.”
New Disease, Old Fears
The Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB) has learned a great deal about the power of culturally competent care in addressing the needs of those living with and affected by HIV/AIDS since the days before and following the passage of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990.* The Act provided much needed Federal support in the form of financial, political, and social capital, to the community-based response addressing AIDS nationwide. As demonstrated by the successes of HRSA’s AIDS Service Demonstration Grants of the 1980s, these often grassroots-led efforts effectively targeted, recruited, and retained into care populations most vulnerable to HIV, which at first were predominantly gay men and other sexual minorities, and quickly expanded to include women and ethnic and racial minorities. Since that time, the Ryan White HIV/AIDS Program has raised the bar around service delivery to diverse populations, effectively redefining culturally competent health care in the United States.
Many of these providers, and those that have been established since then, created their systems of culturally competent care in response to the cruelty and stigma they saw directed toward AIDS patients, by the general public, and even their colleagues, at the start of the epidemic. Much of this fear and misunderstanding stemmed from the little information available at the time, when the only thing for certain was that gay men were dying—and dying fast.
* Today called the Ryan White HIV/AIDS Treatment Extension Act of 2009, or simply the Ryan White HIV/AIDS Program.