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Dee Lee has no relevant financial relationships to disclose.
Department of Infectious Disease
Nanjing, Jiangsu, China
Jie Li, MD, PhD, has no relevant financial relationships to disclose.
Dee Lee is the Director and Founder of the Inno Community Development Organisation, a nonprofit organization that aims to create social impact through social innovation. One of Inno’s primary aims is to fight stigma and prejudice against people with hepatitis B virus (HBV). Mr Lee has been living with chronic HBV infection since he was 2 years old, when he contracted the disease through a blood transfusion. In this discussion, he and Jie Li, MD, PhD, a hepatitis specialist at the Nanjing Drum Tower Hospital in Nanjing, China, discuss their experiences with barriers to HBV care and key action items to reduce those barriers in China.
Jie Li, MD, PhD:
In China, the public testing rate for HBV is very low. I believe this is because people do not want to know their HBV status due to discrimination. It may be difficult for people with HBV to get a job and socialize because others may not want to work or live with them. Some people think it is dangerous to work with a person with HBV. This is completely false, and we need to do a lot of work and education to improve this.
I agree. There is a lot of misunderstanding about HBV within China. My mother initially believed that I contracted the virus through mosquitos. My father—a medical expert in kidney disease—also was not very knowledgeable about HBV. This is common in China, even among persons with higher education.
I personally felt this discrimination as a young adult. My status was protected by my primary and middle school teachers, but it became more difficult to hide at the age of 18 when enrolling in university. Indeed, approximately 50% to 60% of available majors at university required negative hepatitis B and C tests for enrollment. These majors included those involving food, tourism, pharmaceuticals, chemicals, and education. Similarly, many areas of the job market were restricted to people who tested negative for many diseases, including HIV/AIDS, hepatitis B and C, and tuberculosis. Discrimination is still very prominent in the workplace. Some frontline workers in factories, for example, may be forced to take a test and, if positive, either forced to leave or separated into different areas. This stigma exists because many people believe that HBV can be transmitted by shaking hands, hugging, or sharing utensils or that the disease is airborne.
I believe stigma is still the biggest problem regarding hepatitis in China. This is what made me leave my job and start the Inno Community Development Organisation. Through this organization, I am able to fight for people like me living with HBV and for the community. We started by campaigning in the workplace and getting the message out that it is illegal to discriminate against people with HBV and illegal to perform a blood test. Then, we set up a hotline for workers to report cases of discrimination. We then pressured international brands—including Nike, Adidas, Burberry, HP, and Dell—to stop discrimination.
For women, there is yet another concern—discrimination from family based on their hepatitis status. It is not uncommon for a woman to hide her status from her parents-in-law because her children would be considered imperfect and unhealthy. The family even may ask her to leave the home or ask their son to divorce her.
Call to Action in Clinical Settings
Although I do not believe it is possible to completely remove the discrimination surrounding HBV within China—at least not quickly—I do think a key call to action is to create a safer and more protected environment for people with HBV. For example, Inno is now running a center for people with hepatitis to fight discrimination in 5 countries in Asia: China, India, Vietnam, Cambodia, and Thailand. These countries sometimes experience a very hidden and hideous discrimination.
Furthermore, we must educate the public that they should not fear a person living with HBV, nor should they themselves fear an HBV diagnosis. The education should focus on ways the disease is transmitted and the functional cure that may be attained. The path to a functional cure requires a more comfortable space with less discrimination and stigma so that people living with hepatitis B can be engaged in care.
Jie Li, MD, PhD:
I agree. Many people in China are infected at a very young age and may not experience symptoms for a long time. Therefore, education on the risk of serious outcomes even in the absence of symptoms, such as cirrhosis and liver cancer, is very important and currently not sufficient. The educators should be the physicians, and even they require education on HBV. The education should emphasize that one should not be terrified of an HBV diagnosis. We have very good antiviral therapy that could lead to good outcomes and perhaps a functional cure. Without these medications, however, most patients will develop cirrhosis or liver cancer. I think that, with proper education and knowing the potentially negative outcomes of untreated disease, patients will be more likely to make the choice of getting tested and receiving treatment.
Yes. We also must take legal action when necessary if individuals are discriminated against based on their HBV status in the job market, educational system, or medical system.
Jie Li, MD, PhD:
Another key call to action is to implement universal screening for HBV. The world set quite an example with COVID-19 that universal testing can be done, so I think this needs to be done with HBV.
Finally, once patients receive an HBV diagnosis, they usually are most worried about how to protect their families—I think this is the most common question I am asked. The answer is that their loved ones need to be vaccinated against HBV. The vaccination program is very strong in cities, especially among young people, but it is less strong in the rural community, so we have some work to do there.
How do you think stigma and discrimination toward patients with HBV should be tackled? Share your thoughts in the discussion section below.