No study teases out the complex social, cultural and medical reasons why
healthcare providers fail hepatitis B patients like a recent Asian
Liver Center at Stanford University study. (U.S. Doctors Failing to Treat Patients Who Need Treatment)
Researchers asked obstetricians and perinatal nurses in Santa Clara, CA,
why they struggled to screen, educate and treat pregnant women who were
infected with the hepatitis B virus (HBV).
At first glance, these providers should be at the top of the hepatitis B
treatment game. They practice in an area that has some of the highest
chronic hepatitis B rates in the country (California is home to
one-quarter of U.S. infants born to HBV-infected women). Yet they failed
miserably to educate these women about the need for prevention,
monitoring and treating hepatitis B.
The factors leading to their poor treatment practices, which are
highlighted in the study, are no doubt in play at many medical practices
across the U.S.
The providers didn’t know much about hepatitis B to begin with and their
focus was on obstetrics more than viral infections. Often the patients
didn’t want to hear about the infection because of the stigma associated
with it, and the clinics lacked culturally-appropriate resources.
In their interviews with researchers, doctors and nurses said hepatitis B
was mentioned only in passing when virology or the liver health was
discussed during training. Also, senior doctors who lead most medical
trainings knew little about cutting edge hepatitis B prevention and
treatment.
Another factor that kept providers from tackling hepatitis B was that
some patients didn’t appear to be interested in hepatitis B nor did they
grasp its long-term health ramifications.
The patients were there for obstetric care, and hepatitis B infection
seemed to be an after thought in the doctor-patient dialogue. But would
they have had that same response if the patient was found to be
HIV-infected? Doubtful. Yet these patients can easily transmit this
infection and their own risk of liver damage and cancer increases if
left untreated.
These medical practices lacked a protocol to refer infected patients to
specialists and require that family members be tested, educated,
vaccinated and treated if necessary.
Cultural barriers also played a large role in inferior treatment. At
first glance, one might think these providers (many of whom were
Asian-American) would be culturally adept at treating Asian-American
patients. But that’s akin to expecting a Romanian to understand British
culture because they’re both white Europeans.
The Asian-American population is made up of many cultures have a variety
of languages. Best practices require health care providers to provider
translators if patients have limited English proficiency--but that
resource is costly and the complexities of hepatitis B are difficult to
teach without a shared language. And, even printed education materials
in various languages aren’t helpful if patients can’t read.
Similar cultural challenges and language barriers exist in communities
with other ethnic groups, including recent African refugees. If Santa
Clara County can’t get it right, what kind of care are Somali refugees
in Maine or Hmong people in the Midwest receiving.
This study underscores the critical need for a national, comprehensive
plan that addresses the emotional, social and medical issues related to
hepatitis B.
In the study, one provider recounts how a pregnant, HBV-infected woman
begged her not to mention her infection in front of her husband. The
medical community still hasn’t learned the AIDs movement’s lesson:
Silence equals death.
Christine Kukka, HBV Project Manager, HBV Advocate