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Assistant Professor of Clinical Medicine
Division of Digestive Health & Liver Diseases
Department of Medicine
University of Miami Miller School of Medicine
Patricia D. Jones, MD, has disclosed TBD no relevant conflicts of interest to report.
Hepatitis B is a common problem affecting many in the Caribbean communities we serve in south Florida. There are many barriers to care in these communities, which are driven by economic and racial disparities. Here are my experiences working with this community to better understand barriers to care and potential strategies to overcome some of these barriers.
Barrier: Lack of Knowledge of HBV Risk and Screening Recommendations
One major barrier I have observed is that there is limited understanding about who is at risk and who needs to be screened for hepatitis B virus (HBV) infection. Unfortunately, this means that many are not screened or treated for HBV infection until they develop complications, such as liver cancer or cirrhosis. We surveyed trainees from 3 internal medicine residency programs, 1 family medicine program, 1 gastroenterology fellowship, and 1 infectious diseases fellowship. We found that trainees are aware of some risk factors for HBV infection, including drug use and incarceration, and they recognize that it is important to screen those populations. However, many are not aware that individuals born in certain countries also need to be screened. This was apparent not only for populations from Caribbean countries highly relevant to our area, including Jamaica, Haiti, and Colombia, but also for people from Asian countries where HBV is common.
This limited knowledge of HBV risk and screening is not specific to our area or our trainees; it has been demonstrated in many other studies among primary care providers. However, I think it’s one of the main barriers affecting the immigrant population in our area.
This knowledge barrier also exists in some of the communities that we serve. To better understand what community members know about HBV and how they would like us to share information, we conducted focus groups in Black communities in Miami. We focused on people born in the United States or in Haiti. The community members who participated were aware of liver disease and its complications but were generally unaware that HBV affects them more than other communities.
Strategies to Overcome Knowledge Barriers
It will be interesting to see if universal screening recommendations help to close the screening gap by removing the need for primary care providers to acknowledge and understand risk based on birthplace or other risk factors. Other cities, like San Francisco and New York, have implemented successful information campaigns to increase awareness, and HBV screening has increased. However, what works in other cities may not necessarily work everywhere. We wanted to understand what causes barriers to care in our area. Community members provided us with great recommendations for how we can educate and increase awareness in our community. These include holding town hall meetings as well as educational sessions targeted at the youth who can then educate others in their families. They also suggested using media, such as radio programs, to increase community awareness about HBV.
Many of the community members we talked with said that even once they were aware of their increased risk for HBV infection, they might be afraid to get screened because of the stigma associated with it. Some participants in our study said that they might treat someone differently if they knew the person had HBV infection. Some of our participants with HBV infection confirmed that they had felt stigmatized and/or discriminated against and, therefore, were reluctant to share their story with others—even family members. I also see this in my practice; some of my patients say they cannot tell their family they have HBV because others will assume they were participating in risky activities and they will be treated differently.
Strategies to Overcome Stigma
The message needs to be crystal clear: Having HBV infection is not a personal or moral failing. Many patients have said to me that their family members are convinced that they have HBV infection because they “must be having sex with people.” Educating communities that HBV exposure can happen in a variety of ways is very important. Having HBV is no one’s fault. It is important that we are sensitive when discussing the disproportionate impact of HBV infection on specific communities, such as immigrant communities or racial minorities that may already feel disenfranchised. We do not want our actions to increase the stigma or contribute to shame as this may inadvertently lead people to avoid, rather than seek, care.
Barrier: Access to Medication
Too many people remain unable to afford the care that they need and deserve. Some of our community members told us that they do not want to be screened because they are afraid that they will have the infection and may need to take medication, which they cannot afford. Here in Florida, legislators did not opt to expand Medicaid. Therefore, many do not have insurance to visit the doctor/healthcare professional and cannot get screened or treated for HBV. Even with insurance, the monthly costs of HBV medication remain very high, and many patients simply cannot afford the out-of-pocket costs.
Strategies to Improve Access to Care
I think we need to meet the community where they are. The healthcare system needs to go to the community, rather than making the community come to the healthcare system. People are afraid to go to the doctor because they cannot afford to take time off work or cannot afford the copay. Community-based testing is a convenient solution to both of these problems. When we did a study of community-based HBV testing, nearly all participants thought it was acceptable. By focusing on community-based screening and vaccination, we may be able to get ahead of HBV spread and reduce the number of individuals who would need care for hepatitis B.
The next step after diagnosing HBV infection is linking those with HBV to ongoing care, and that is much more challenging because the costs can be prohibitive. In addition, the care for HBV can be complex and might require the care of a specialist. Some people will require ultrasounds for cancer screening or expensive medications. Patients may not be able to afford the recommended tests or the medication. It is so important that we think creatively about how to deliver cost-effective care to patients. It is far more expensive to treat the complications of HBV than to treat the HBV itself.
The care continuum from screening to treatment comes down to a financial investment. It is about where we, as a society, choose to spend money. Although less prevalent in the United States than in some other parts of the world, HBV continues to contribute to excess morbidity and mortality. However, my perception is that there has been less of an investment in hepatitis B compared with other forms of hepatitis or other infectious diseases. I think this is, at least in part, due to structural racism. The people affected by hepatitis B are largely immigrants and minorities who may be afraid to advocate for themselves because they fear they may invite stigma and/or they are concerned about financial or social repercussions. Ultimately, if we are going to reach the goals set in the National Viral Hepatitis Action Plan, we have to really rethink how we invest in care and allocate more resources to HBV screening and treatment.
What barriers to HBV care have you observed in the communities you serve? Please share your thoughts in the comments section.