Beyond the Exam Room: Patient and HCP Perspectives on Barriers to HBV Care in Europe

Key Takeaways

• Barriers to HBV care in Europe include lack of awareness, stigma, and low rates of screening and diagnosis.
• Key calls to action to help eliminate barriers to HBV care within Europe include normalizing HBV as a chronic disease, patient and physician education, and point-of-care testing.

Silvana Lesidrenska lives in Bulgaria and is the chair of HepActive, a patient association founded by patients and their relatives in 2009. She is living with chronic hepatitis B. In this discussion, Ms. Lesidrenska and Maria Buti, MD, a renowned hepatitis B healthcare professional at the Vall d'Hebron University Hospital in Barcelona, Spain, discuss their experiences with barriers to hepatitis B virus (HBV) care and key action items to reduce those barriers in Europe.

Barriers to HBV Care in Europe

Maria Buti, MD:
From my perspective, a major barrier to HBV care is screening and diagnosis because hepatitis B is an asymptomatic disease. Therefore, in the majority of cases, a person is diagnosed only when the disease is at an advanced stage. We are fortunate in Europe, unlike in the United States, that the majority of countries provide medical coverage for screening and diagnosis and even for treatment. However, the benefits of screening are not promoted adequately by policymakers due to lack of awareness.

Silvana Lesidrenska:
I agree that lack of screening and diagnosis remains one of the biggest barriers, but in Bulgaria, I think the lack of awareness is even more pronounced, especially among healthcare professionals. In fact, even when patients want to get tested, many times the general practitioner advises that this is simply a virus one carries for life and treatment is not needed.

Maria Buti, MD:
We also have this same problem in Spain. I believe primary care physicians are not sufficiently educated about viral hepatitis B, especially since hepatitis B has a more complicated diagnosis and natural history than hepatitis C. For hepatitis B, we have several markers and different phases of the infection, and not all people infected with hepatitis B are chronic carriers. Usually, the primary care physician is the person in charge of testing and linkage to the specialist, and this is not always easy to do because the disease is complicated.

Another barrier regarding awareness is language because the majority of people with hepatitis B in Spain are migrants from other countries where the infection is more prevalent. Sometimes it’s difficult to promote education and increase awareness in patients who have these language barriers.

Silvana Lesidrenska:
Yes. We really need in-depth awareness among general practitioners, among patients and the general population, and among people who are making the decisions in the government. If this is achieved, it will be much easier to increase screening and linkage to care. The education should focus on how we can prevent cirrhosis and liver cancer if we have timely diagnosis and treatment.

Stigma

Maria Buti, MD:
I think it’s very important that people realize that hepatitis B is the main cause of liver cancer worldwide, but also that we have a vaccine so it is completely preventable. In this regard, we can help patients with hepatitis B to identify their relatives and vaccinate them against hepatitis B.

To do so, however, means we must overcome the stigma associated with the disease because stigma closes doors. If people, and even some physicians, are afraid of associating and treating patients with hepatitis B, these individuals will not disclose their status and, therefore, will not take the steps needed for their own health and the health of others. Overcoming this stigma will take a multidisciplinary approach and collaboration between patient organizations, hepatologists, and other individuals interested in fighting hepatitis B. I think this is very important because sometimes the voice of the patient is absent, and I think patients have to speak up.

Silvana Lesidrenska:
Yes, I also think we need collaboration between patients and hepatologists because I think this will help to reduce the stigma. I can assure you that the stigma goes both ways. Patients sometimes feel that it’s better to keep the diagnosis a secret because other people will accept them in a different way. On the other hand, and I’m very sorry to say, there is real stigma on the part of medical professionals. For example, I’ve been denied dental surgery because the dentist was afraid that I would transmit hepatitis B, even though proper sterilization would have essentially avoided any risk. We recently conducted research among general practitioners, and it was a shock for me that almost one quarter of general practitioners still think that hepatitis B is transmitted like hepatitis A.

I think campaigns that aim to reveal the truth behind some of the myths will help tremendously, and I think this has to be done between patients and hepatologists because they will have a stronger voice together. Indeed, this union would be top-notch because one side of the story from the patient is personal, and the other by the medical professional is more fact based.

Meeting Patients Where They Are

Maria Buti, MD:
I am now the European Association for the Study of the Liver (EASL) policy counsel, and we are trying to organize every EASL meeting to include a patient forum to discuss these aspects—I think the conversation with the patients is extremely important. Physicians need to know how patients are suffering because it’s the only way to improve the situation.

I think it may also be important to involve gynecologists and other family planning specialists because the only way to prevent transmission of the virus to newborns is through vaccination. In some countries, there is inadequate adherence to the 3 doses of vaccine that are needed, or newborns are vaccinated late.

Another important barrier is that we don’t perform screening in the community. This is particularly important for migrants and other vulnerable populations that may not see a primary care physician. For these populations, it’s very important to conduct screening at the community level at the places that they usually go. Furthermore, we should consider using point-of-care testing, which is available for hepatitis B, but less used than for hepatitis C. I think this could be a good solution for screening some populations. As an example, I am part of a project in Barcelona called COMSAVA that conducts screening of people born in West Africa. The screening is conducted using point-of-care testing in churches on Sundays by a community worker.

Call to Action in Clinical Settings

Silvana Lesidrenska:
A key call to action that will help eliminate barriers to HBV care within Europe is to begin to normalize hepatitis B as a chronic disease. I believe, as a patient myself, that if other individuals see our disease as something normal—like diabetes or high blood pressure—they will be more accepting of the steps that need to follow, such as vaccinating individuals close to the patient, treatment, and so on. This is in contrast to how I believe I am seen now: as a virus that people are afraid to be around. This normalization message will be challenging to deliver, however, because we must also emphasize that there can be some very serious outcomes if the disease is not managed appropriately, such as cirrhosis or liver cancer.

Maria Buti, MD:
For me, critical calls to action are increased testing, vaccination, and diagnosis because these are the only ways to fight against hepatitis B. For testing, we talked about increasing awareness and perhaps using point-of-care testing in the community. In Europe, I also think we need to do a better job of educating primary care physicians since education on diagnosis and treatment of hepatitis B is typically only provided for specialists. Since treatment can be very easy—1 pill once daily—we should consider moving treatment to the community. I think this is the only way that we can change ideas and motivate primary care physicians to be involved like they are involved in other diseases like diabetes or hypertension. I think they have to do the same with viral hepatitis.

For vaccination, we must educate about the importance of being vaccinated because some people are very reluctant to any immunization. Regarding diagnosis, I think normalizing hepatitis B as a chronic disease as you discussed, Silvana, will be extremely helpful as it will make people less afraid of receiving the diagnosis.

One effort I am involved in in Barcelona is a game offered during community screenings called HepTalk that you can play on your iPhone. This game is essentially an educational program offered in different languages, such as Pakistani and Mongol, where we explain what hepatitis B is, how to diagnose the disease early, how to prevent the disease, and so on. Individuals can play this game while waiting for the results of the testing and I think it is a good way to educate patients.

Silvana Lesidrenska:
To me, the goal of moving hepatitis B treatment to primary care physicians is the most important point we have discussed. This is something that we miss so much in Bulgaria. Diagnosis and treatment for hepatitis B in Bulgaria is always hospital based and is very complicated. Often people are required to be hospitalized for several days. People from rural villages or small towns cannot travel to these clinics, and they cannot afford to visit them every few months. We need to make diagnostics and treatment accessible and simple. As Dr. Buti stated, why not involve general practitioners since they will have easier access to the patients and then will also become more aware of the disease? I think this one of the keys to elimination of hepatitis B.

Your Thoughts?
What barriers do you believe primary care physicians face to providing optimal HBV care? Take part in our poll or share your comments in the discussion section below.