Hepatitis Free Mongolia

In Phase 2, we developed a patient registry to track our screening and treatment progress and document reaching 90% of the target population. However, its functionality did not meet the anticipated requirements. A compressive patient registry is essential to reaching elimination. In Phase 3, we will leverage insights from previous phases to implement an enhanced registry system. To do this, we will follow the following steps.

• Set up and adapt a Patient Registry Framework.
• Compile a comprehensive database for Hepatitis Coordinators to invite individuals to the screening who need to be tested or who have tested positive and need treatment. To create this list, we will proceed through the following steps:
  • Hire a local team of statisticians and manage the data with the hepatitis coordinators and local program coordinators.
  • Build a list of the province’s citizens from the province’s registration.
  • Work with the health department office to update testing status with results from other screenings, including HLP, Whole Body, and National Insurance. 
  • Collaborate with local administrative officials (bag governors) to update the contact information of missing people who have moved out of state or the country.
  • Work with primary clinics to update testing status and results
  • Share complied data with complete testing and treatment status for the province with the province 

The ‘Hepatitis Coordinator’ role, conceptualized and implemented by FIRE,  during Hepatitis Free Mongolia, Phase 1, with the support of Rotary Club of Ulaanbaatar and Saga University in Japan based on a model Saga University has been using for several years. Since 2017, 300 healthcare workers, social workers, and community members have been trained as Hepatitis Coordinators in three provinces. Hepatitis Coordinators are government-employed social workers, healthcare workers, and bag governors selected by the provincial health department. 

All Mongolian citizens are documented in a centralized national registry and assigned to a local clinic and social welfare office. The Hepatitis Coordinators work within these systems to locate individuals, assisting and advising them on the steps for testing and treatment regardless of whether they are insured. 

Hepatitis Coordinators are trained to help build the patient registry, locate and guide community members, educate the community about hepatitis, and raise awareness on prevention and treatment by visiting schools, government offices, and other places of employment. We are implementing lessons derived from previous phases from Phase 1 and 2’s implementation to update the Hepatitis Coordinator model. We will expand and refine the model through comprehensive training and strategic management for Phase 3. We have established clear roles, expectations, and compensation structures for Hepatitis Coordinators. The roles are divided as follows:

• • Social workers invite individuals to the screenings, work with the bag governors to locate missing people, and update contact information. 

• • Social worker Hepatitis Coordinators contact every community member in their assigned community who needs to be tested until they are tested. 

• • Due to privacy regulations, healthcare workers will be the only ones working with data. They help build the initial patient registry and update all patient information throughout the project. They call people regarding treatment and travel with the bag governors when they visit families in the spring for an awareness campaign.

• • Bag governors are the elected leaders of the smallest administrative unit in Mongolia. They are uniquely positioned to have updated paper records and contact information for of all their assigned citizens. They help identify and invite individuals for screenings.

Mongolia’s national Healthy Liver Program currently requires several tests to begin hepatitis treatment that are not available in rural Mongolia where half of Mongolia’s population. Some required tests are not available at the primary care clinic, meaning people can have to travel for up to one day to reach the provincial capital for the testing. Other tests are simply not available at all outside of Ulaanbaatar, Mongolia’s capital, such as FibroScan.

A team of Mongolian specialists consisting of an oncologist, hepatologists, and ultrasound and FibroScan specialists, travel from Mongolia’s capital city, visiting every health clinic in the province to provide the following free services:

Step 1: Rapid serum tests for viral hepatitis B and C are given.
Step 2: Those positive for HBV or HCV have an ultrasound examination.
Step 3: Those with liver lesions are tested for AFP and are seen by an oncologist.
Step 4:Those with signs of cirrhosis during the ultrasound exam are given a FibroScan and seen by a hepatologist.
Step 5: Those who test positive for HBV or HCV but have no indication of current cancer or cirrhosis are seen by a hepatologist.
Step 6: Hepatologists and oncologists physically examine and counsel participants on their medical condition, follow-up treatment, physician referrals, and necessary lifestyle changes.

Connection to Care: Each participant’s counseling includes an explanation of their medical condition, future care, and follow-up treatment. Patients will receive a short booklet detailing treatment options, proper nutrition, transmission prevention, and the necessary lifestyle changes they need to make. Counseling also includes physician referrals and connection to treatment.

• HBV treatment is available from any doctor in the country and is covered 60% by national insurance. The patient is responsible for $29.55 per month. Treatment can be accessed everywhere.
• HCV treatment is not available at the county clinics. Usually, only 1-2 doctors in the province can prescribe HCV treatment and care for patients. There is no insurance coverage for HCV treatment, so a full course of treatment costs $145 to $338.
• HDV treatment is currently available in Mongolia but in limited supply and is very expensive. However, with restricted access, Bluevirtide is expected to be released in Mongolia in late 2024 or early 2025.
• HCC treatment is only available in UB. Seeing an oncologist during our screening frees patients from the expensive and lengthy travel to UB and waiting times.

Increasing Access: While in the provincial center, we will base the screening at the provincial hospital and travel to local markets, schools, government organizations, and large businesses, as some people are unable to travel or leave work to come to the provincial hospital. Additional HBV, HCV, and AFP tests will be left for the uninsured at each primary care clinic. By traveling to every clinic in the province, we are providing access to testing and connection to treatment to the most remote people in the province.

The tools have long been available to eliminate HCV. Mongolia previously held a pioneering position in hepatitis C virus elimination efforts, setting an early example for the world in the fight to end hepatitis. Mongolia’s HLP, extensive social service network, individual registration numbers, and well-connected healthcare infrastructure create a prime opportunity to accomplish its stalled goal. This initiative exemplifies the feasibility of eliminating and potentially revitalizing Mongolia’s Healthy Liver Program and path for other communities worldwide.

Through the synergistic integration of multiple intervention strategies, working with Hepatitis Coordinators to utilize the patient registry and providing support for those in need we will eliminate HCV at the provincial level with 90% screening coverage for hepatitis C and B viruses among the population aged 15 and above, and successful treatment and cure of 80% of individuals testing positive for hepatitis C virus These activities are:

• Connect patients to care: Provide all necessary tests to start treatment, such as PCR testing, connect them to long-term treatment, and coordinate with existing government networks for treatment access.
• Coordinate patient care: We will track patients until they have been treated with consistent calls and follow-up. 
• Provide financial support for the uninsured: The number of people excluded from the Healthy Liver program for lack of national health insurance is unknown. Most herders, unemployed, and self-employed people, especially in rural areas, do not have consistent health insurance and, therefore, do not have access to free government screening or life-saving treatment. Approximately 50% of the Mongolian population lacks health insurance coverage. This is considerably more than was originally expected. Uninsured people cannot access basic hepatitis rapid tests normally covered by insurance.  Every employed person is automatically enrolled into the National Insurance system by their employer. If a self-employed person wants to start insurance to access treatment, they must pay the premium back for five years. To help alleviate this barrier and fill the gap, we will provide the following support for the uninsured.
  • Test everyone, regardless of insurance status.
  • Pay for PCR testing if needed.
  • Pay for HCV treatment if needed.
• Employ Hepatitis Coordinators to optimize utilization of social service registration databases and networks to locate people, working with local bag and county governors and tracking them until they are screened and treated if needed.
• We will implement the patient registry to comprehensively monitor community member engagement, screening participation, and treatment adherence.The registry will allow us to monitor and evaluate treatment and screening outcomes and adjust strategies to ensure effectiveness.

In addition to training hepatitis coordinators, in conjunction with our mobile screening, we conduct capacity-building activities for healthcare workers led by specialists visiting Ulaanbaatar, the United States, and abroad. Local physicians shadow specialists during the screening activities and lead additional classroom sessions. Specialists leading the training include oncologists, hepatologists, ultrasound specialists, and fibro-scan specialists. The Mongolian Ministry of Health approves the curriculum and methodology, and all participants are given continuing medical education (CME) credits for the training. For more information, please visit our Healthcare Worker Capacity Building webpage.

Community Awareness Events are conducted to support various activities, including Hepatitis Free Mongolia and World Hepatitis Day. In addition to the community awareness fair, we spend time at local markets, in schools, local businesses and other locations, distributing thousands of pieces of information and promoting awareness.

• Awareness Materials: We have created a 20-page booklet with detailed information about all aspects of liver disease and liver health and posters for display at health clinics and other community businesses. 
• Distribution of IEC Materials: In addition to other events and activities, the initial distribution of IEC materials targets clinics, hospitals, government offices and libraries, businesses, community centers, and other gathering spots around the province. 
• Direct Community Outreach: Hepatitis Coordinators reach out to community members to share information and increase participation in screening and treatment. They connect to community members through:
  • Small community gatherings and outreach at local community centers, schools, and businesses
  • Travel to visit remote families with the bag governor on his annual rounds
  • Visiting markets and other gathering spots

• Community Awareness Fair and Opening Ceremony: In collaboration with the local health department, local organizations, and private entities, we conduct a community awareness fair and opening ceremony in the province center at the start of the first screening to generate interest, gain support, and enlist community leaders. It includes entertainment and family-oriented activities for all ages. We educate community members by distributing pamphlets, posters, videos, information booths, and speakers. Some information booths include doctors, informational handouts and displays, and interactive games.

• Advocacy: The community, government, and business leaders will be invited to a half-day advocacy meeting at the start and end of the project. Through these strategic advocacy meetings and targeted information sessions, we will provide solutions to bring the community’s logistics and financial influences together to implement further solution-based programming. These people will be selected with the support of the local health department. 

For more information, please visit our Community Awareness webpage.

The hepatitis B vaccine protects against liver cancer. It will be provided to everyone who will accept it.  We will contact government offices, large businesses, and community markets to increase this number and offer vaccination. 

The healthcare environment is one of the leading forms of transmission for infections, including blood-borne viruses such as hepatitis. Poor medical waste management, handling of sharps, and health safety practices are primarily attributed to the cause of this transmission. In future Phases of Hepatitis Firee Mongolia, we will increase infection prevention and control efforts in the clinics with supplies and education for healthcare workers, including unregulated dental clinics. We will also educate community members administering home healthcare, tattoo studios, beauty salons, and other high-risk community businesses. For more information, please visit our Infection Prevention and Control webpage.

This initiative aims to generate the following data to inform global stakeholders, including governmental bodies and organizations and stakeholders worldwide, about hepatitis program management, gaps, barriers, lack of access, and treatment issues. The eradication model developed through this project has the potential for scalability and adaptation across diverse communities in Mongolia and globally. Some of the data produced by this project will include:

• Comprehensive analysis of disparities in hepatitis screening and therapeutic interventions within Mongolia to inform evidence-based policy modifications and strategic updates.
• Further testing and development of a patient registry.
• Epidemiological data on prevalence rates for diverse hepatic disorders, with specific emphasis on hepatitis D virus (HDV).
• Detailed protocol for implementing community-centric interventions to enhance screening participation and treatment adherence.
• Comprehensive methodological framework and replicable program model.
• Synthesis of lessons learned and evidence-based recommendations for future program development and implementation.