Viral Hepatitis Project Engages Community to Transform Care

When Diane De Silva tested positive for hepatitis B during a routine screening that was required for a job application, she was confused and scared. She knew the disease could be deadly. She didn’t know if there was any treatment or any way to protect her family from getting sick, and she was too scared to ask her doctor how long she might have to live or what her options were.

But the worst part, she says, was the fear that the stigma against people with hepatitis might cost her a job she needed to support her family and might lead to isolation from family and friends.

“I thought to myself, ‘It’s not the disease that will kill me, it’s the discrimination,’” De Silva recalled at a recent Harvard Global Health Institute presentation. One of an estimated 10 million people in the Philippines living with hepatitis B, she is now an advocate for people in the Philippines and around the world living with viral hepatitis.

Each year, more than one million people worldwide die from liver disease and cancer caused by hepatitis B and hepatitis C. In the next fifteen years, these two viral diseases are on track to cause more deaths per year than tuberculosis, AIDS, and malaria combined, according to the World Health Organization. Yet hepatitis B is preventable with a vaccine, and chronic cases can be treated, and hepatitis C is curable with oral antiviral medication. Stigma and a lack of effective systems for delivering care mean that few people receive treatment or even know they are living with the virus.

For years, the WHO and national governments in viral hepatitis hotspots like Southeast Asia have worked on mounting a response, but only a few people were getting the help they needed.

In 2022, a team of researchers from Harvard Medical School and its affiliated hospitals sought to help by launching a project to integrate care for viral hepatitis into existing community health and primary care systems in the Philippines and Vietnam, two of the hardest-hit nations.

Since then, the results have been remarkable: Whereas before the number of patients receiving treatment was near zero, now more than half of patients diagnosed with hepatitis B or C have received treatment in districts where the pilot program has been implemented for eighteen months.

“We still have such a long way to go, but this is exciting progress and great evidence that primary care is capable of solving complex medical problems in challenging circumstances,” says David Duong, MD ’15, director of the Program in Global Primary Health Care at Harvard Medical School and one of leaders of the project, known as StITCH (Strengthening Integrated Treatment and Care for Hepatitis).

StITCH brings together primary care researchers and physicians across HMS, Brigham and Women’s Hospital, Beth Israel Deaconess Medical Center, academic and government collaborators in Vietnam, and the University of the Philippines, Manila. Gilead Sciences, a pharmaceutical company specializing in antiviral drugs, supports the effort through financial support and collaborates with the program to leverage Gilead’s technical expertise in viral hepatitis.

The first step was to figure out what obstacles were keeping patients from accessing the care they needed. So the StITCH team mapped people’s experiences on their journey to care.

Community care

The team found that in Vietnam, where stigma is less severe than in the Philippines, one major obstacle was that it literally took a journey to get screened and diagnosed. Since no testing was available in community health centers, people had to travel to the district capital to get screened. To get diagnosed, people had to visit several different labs and doctors. The process often required an overnight stay, meaning that patients and any family members accompanying them might miss several workdays, which most could ill afford to do.

The few people who did manage to get diagnosed had trouble finding the medicines they needed because clinics either weren’t sure how to order them or didn’t want to risk pre-purchasing them since so few people were getting diagnosed. In the Philippines, stigma proved one of the main roadblocks. It prevented people like Diane De Silva from seeking care or confiding in loved ones about their diagnosis.

To find the best way to tackle the problem, StITCH brought together people with a diverse set of skills and experiences. In addition to Duong, the team included Todd Pollack, assistant professor of medicine at Beth Israel and an infectious disease doctor with many years of deep collaboration in Vietnam, and Beth Holt, a researcher and physician with a decade of experience working across the Western Pacific region.

The disease is just a way into improving the primary health care system specifically, and the health system overall.

The HMS researchers coordinated their efforts with local academic researchers; national, regional, and local health officials; and providers working in community health clinics and district hospitals in the pilot areas. They also included people like Diane De Silva and their families — people with experience living with viral hepatitis and navigating the health system in their communities.

The solution they reached: redesigning the primary care system to integrate hepatitis care at the community level.

Once the plans were in place, implementation proceeded quickly.

Instead of asking patients to travel to the city for screening tests, health clinics took blood and sent it to the lab by motorbike courier. They made sure providers knew how to get medicines, so patients didn’t need to see specialists. They increased outreach and education to encourage people to get tested, and they worked hard to minimize stigma so that people felt comfortable asking about the disease and its treatment.

According to preliminary data that the group presented at a recent planning meeting, the time it took to link patients to care in the Philippines pilot project decreased from five months to 2.5 weeks. Instead of near-zero access to care, 89 percent of those eligible had started treatment.

In recent months, the Philippines team has reported some challenges keeping screening supplies and medication in stock, but StITCH is working to solidify the program’s footprint. It is also preparing to launch a new implementation project in Quezon City, the most populous city in the nation. While the current pilot zones have allowed the team to tackle the unique problems of rural care delivery, the expansion efforts are an opportunity to test the model in urban communities, the researchers say.

In the Vietnam pilot projects, 90 percent of people with hepatitis B and 64 percent of those with hepatitis C who are eligible have started treatment. Of the seventy-nine people provided antiviral therapy for hepatitis C, thirty-six have been cured so far — all at the primary care level, a first for Vietnam.

StITCH is now supporting the Vietnamese government as it begins to implement the integrated care model for viral hepatitis nationwide.

But this isn’t really about hepatitis, Duong says. The disease is a test case that shows how effective primary care systems can be at dealing with the world’s biggest health problems.

“This is a story about finding a way to give people the right care, at the right time, at the right place, by the right team, in the right way” Duong says. “The disease is just a way into improving the primary health care system specifically, and the health system overall.”

To save people’s lives from liver failure and cancer in these countries, you need to integrate hepatitis care into every aspect of the community health and primary care systems, Duong says. That’s also true for other infectious diseases, noncommunicable diseases like diabetes or cardiovascular disease, maternal and child health, injuries, and mental health. It’s also not only a story about the Philippines and Vietnam, Duong says. This work offers valuable lessons for health care systems in the United States and around the world.

Local solutions for a global challenge

Based on the promising initial results of the viral hepatitis work, Duong, Pollack, and Holt collaborated with Lancet Global Health to lead the Lancet Global Health Commission on People-Centered Care for Universal Health Coverage.

The commission will examine how an integrated, people-centered primary care system, designed hand-in-hand with members of the community that will receive the care, can help overcome the kinds of challenges that health systems all over the world are facing: shortages of primary care doctors, missed opportunities to take advantage of new technologies to improve doctor-patient communications, and the pressing need to find ways to manage complex illnesses and chronic diseases in the communities where people live rather than at distant, overtaxed hospitals.

In the Technology Enabled Education for Community Health program (TEECH), the team in the Program in Global Primary Health Care has also been using these methods to help build better primary care programs in places across the United States where many community members face health care access challenges such as provider shortages, geographic barriers, and high levels of unemployment and poverty. These are:

• ARcare, a large federally qualified health center with clinic sites in Arkansas, Kentucky, and Mississippi 
• Chickasaw Nation, a federally recognized tribe with a medical center and tribal clinics in Oklahoma 
• Minnie Hamilton Health System, which contains a federally qualified health center and a rural health clinic in West Virginia

Like the viral hepatitis work in Southeast Asia, some early collaborations with these groups focused on responding to specific illnesses, including COVID-19, diabetes, and heart disease. But now, as TEECH enters the last year of a five-year grant from the federal Health Resources and Services Administration, the sites are looking broadly at how to identify and overcome their challenges by engaging the whole community in designing better health care.

“We want to get people the care they need, and we know that the best way to do that is to build systems with patients, families, and communities — systems that make patients and people active agents in their own health,” Duong says. Like the viral hepatitis work in Southeast Asia, some early collaborations with these groups focused on responding to specific illnesses, including COVID-19, diabetes, and heart disease. But now, as TEECH enters the last year of a five-year grant from the federal Health Resources and Services Administration, the sites are looking broadly at how to identify and overcome their challenges by engaging the whole community in designing better health care. “We want to get people the care they need, and we know that the best way to do that is to build systems with patients, families, and communities — systems that make patients and people active agents in their own health,” Duong says.

Jake Miller is a science writer in the HMS Office of Communications and External Relations.