This Global Grant initiated by the Rotary Club of Ulaanbaatar (Mongolia), District 3450, and the Flagstaff Rotary Club (Arizona, USA), District 5495. Rotary Global Grant #2011973, Hepatitis Free Mongolia, Phase 2, will eliminate hepatitis C (HCV) in one province with a replicable, “proof-of-concept” system to be scaled up in communities across Mongolia and around the world to manage liver health and other diseases including Covid-19. It will address barriers to awareness, testing, and treatment in the government’s Healthy Liver Program within Mongolia’s challenging rural environment.
Over 14-months we will visit all 16 clinics and hospitals in Sukhbaatar province multiple times. By conducting a mobile screening, community education activities, health care worker capacity building, Hepatitis Coordinator training, and support, and facilitating treatment for the uninsured, we will eliminate hepatitis C in Sukhbaatar province.
This grant is supported by funds from 25 Rotary Clubs, 7 Rotarians, and 4 Districts representing 6 countries and 6 Rotary Districts, matched by Rotary Foundation.
Sukhbaatar province is on the far eastern border of Mongolia. The capital city, or province center, Baruun-Urt, is 375 km from UB. The province has a population of 61,000 across 12 counties plus the province center. The counties range in population from 1,477 to 6,439 residents with 18,190 living in the province center. The average life expectancy of Sukhbaatar is 72 years. Unemployment is 10.9%.
Sukhbaatar province has one of the highest rates of HCC in Mongolia. It has the 3rd highest rate of mortality from HCC (7.5 per 10,000) and the 5th highest rate of incidents (22.7 per 10,000) in Mongolia. The province hospital is permitted to do viral load testing under the NIF, making Sukhbaatar the only province in Mongolia that can do viral load testing without shipping samples to UB, thereby saving both time and money. Sukhbaatar also has motivated leaders who are eager to cooperate with this project.
Of the 61,300 people who live in Sukhbaatar, 43,381 are age 15 or older with 63% having been tested for hepatitis. This leaves 15,985 still in need of testing. Of the 1,833 people who tested positive for HCV in Sukhbaatar, 25% have been treated, leaving 1,743 known HCV positive people in need of treatment.
Based on the provincial government’s reporting, 12% of the province’s residents are uninsured. This is 5,205 of the 43,381 people aged 15 or older. However, based on the issues with the “insured” classification leaving many of those people counted as insured still not being eligible for the Healthy Liver Program, and after discussions with the county clinics and provincial health department, we are counting 20% of the population over age 15 as uninsured for budgeting and program purposes. This is 8,676 people.
- Activity 1: Increase access to specialized health care services through testing, counseling, and connection to care for viral hepatitis, liver cancer, and other liver diseases by a team of medical specialists from UB.
To launch the elimination project, we will screen 5,000 people in three, 2-week trips (over an 8-week period) traveling to all 12 county clinics during a mobile screening.
This mobile screening will create awareness of the national Healthy Liver Program and of liver issues including hepatitis, liver cancer and cirrhosis. The delivery of free comprehensive liver testing provided by visiting specialists from UB increases voluntary testing. Some of the tests provided by this mobile screening will overcome the barrier of required tests to start HCV treatment not being available in the provinces or covered by insurance, including AFP testing and FibroScan examination.
This mobile screening also allows those with cancer or suspected cancer to be directly connected to oncologists from UB rather than waiting months and having to cover the expense of traveling to and staying in UB. In 2017’s Phase1 project in Dornod province, only 16% of the 44 people diagnosed with HCC were considered too late for treatment. This is a significant improvement over the national average of 68% who die within one year of diagnosis due to late diagnosis.
Mobile Screening
Each participant will proceed through the following steps:
- Rapid blood testing for viral hepatitis B and C
- Ultrasound examination if positive for HBV or HCV
- Blood testing for liver cancer as indicated by the ultrasound examination
- FibroScan examination as needed
- Physical examination and counseling by an oncologist or hepatologist
- Connection to treatment
While in the province center, in order to reach as many people as possible, we will base the screening at the province hospital and also bring the screening to local markets, universities, government organizations, and large businesses as some people are not able to travel or leave work to come to the province hospital.
Additional HBV and HCV tests will be left at each primary care clinic for the uninsured. AFP (alpha-fetoprotein) tests will also be left behind at the primary care clinics to be used for those who test positive for HCV (estimated 2,200 people) and for those who tested positive prior to the start of this project but remain untreated (1,541) so they can start treatment. Most provinces are not able to do the AFP test. If they have AFP tests most patients are not able to afford the tests. Insurance does not cover this expense, yet requires the test to be done before starting HCV treatment.
FibroScan is an essential and unavailable part of liver health in Mongolia. The high rates of fatty liver and cirrhosis accelerate liver decompensation and affect treatment. It is also a required test before HCV treatment can start, however, it is not covered by insurance. There are currently no FibroScan machines outside UB or at any state-run hospitals in all of Mongolia. Most provinces are also not able to do the three different required tests to calculate the APRI score. Dr. Eguchi, from the Liver Center at Saga University, will also leave a FibroScan machine in Sukhbaatar for unlimited use for the duration of the project.
Only three of the 12 county clinics have reliable ultrasound machines yet it is a required test to start HCV treatment. By providing ultrasound and FibroScan examinations through the mobile screen will enable more people to start HCV treatment. Both the FibroScan and ultrasound machines and specialists from UB are a tremendous draw to bring community members to the screening events.
Counseling
The counseling for each participant includes an explanation of their medical condition, future care, and follow-up treatment. Patients will receive pamphlets detailing treatment options, proper nutrition, transmission prevention, and the necessary lifestyle changes they need to make. The pamphlets will specifically focus on HCV, HBV, HCC, cirrhosis, and healthy liver. Counseling also includes physician referrals and connection to treatment.
- Activity 2: Support for the uninsured to receive testing and one year of insurance and thus necessary treatment.
Anyone who has not had the national health insurance for 12 consecutive months cannot participate in the Health Liver program, including being tested for HBV or HCV. We will test everyone who does not qualify for the Healthy Liver Program and will pay for health insurance for everyone who tests positive for HBV and HCV.
We will test all the uninsured individuals in Sukhbaatar province. As previously stated, we are estimating 20% of those over the age of 15 will be ineligible for the Health Liver Program and thus need free testing and possibly treatment. This is estimated to be 8,676 people. These individuals can participate in our mobile screening. For those we do not reach initially, tests will be left with the primary care clinics specifically for the uninsured.
It costs 50,400 MNT ($19.38) per year for insurance for the unemployed or self-employed. To start insurance with new coverage for those who did not have coverage the previous 12 months, the government requires two years’ premium to be paid. We will pay this $39 insurance cost to cover everyone who tests positive for HBV or HCV, giving them access to the government-subsidized treatment.
In past events, 25% of people test positive for HBV, HCV, or other treatable liver issues. Therefore, we estimate 25% of the uninsured (2,200 people) will test positive for HBV and HCV and thus need insurance.
- Activity 3: Capacity building for health care workers
On-site Bedside Training
Health care workers will also be trained through hands-on bedside or “shadow” training with UB specialists. This will be follow-up training for the previously conducted classroom training led by MoH and the Asian Development Bank in 2019.
Local health care workers will follow the visiting specialists as they examine and counsel participants. This will give the health care workers real-time opportunities to practice what they learn during the classroom training. This training will take place in their local clinics throughout the project.
Ultra Sound Training
An ultrasound examination is not only required to start treatment for HCV, it is an important diagnostic tool for liver health and a variety of other issues in Mongolia. Only 3 of the 12 county clinics in Sukhbaatar have a reliable ultrasound machine. We will have our own reliable and portable ultrasound machine to enable everyone who is HCV positive to start treatment.
An ultrasound specialist from Saga University in Japan will accompany the mobile screening team supporting the ultrasound examinations while also training the rural health care workers on the ultrasound use and techniques.
FibroScan Training
Professor Eguchi, a chief hepatologist at Saga University in Japan will lead the FibroScan training for one health care worker from the province center to become a FibroScan specialist. Dr. Eguchi will also leave a FibroScan machine in Sukhbaatar for unlimited use for the duration of the project.
- Activity 4: Training and support of “Hepatitis Coordinators” who will find and direct community members to enroll in screening and treatment.
“Hepatitis Coordinators” is a new role in Mongolia created with the remaining funds from the 2017 Rotary-supported Phase 1 program. We developed the concept with the support of Saga University based on a model Dr. Eguchi initiated. His liver cancer screening program and hepatitis coordinator training was supported by the Ministry of Health of Japan, which contributed to the successful elimination of viral hepatitis in Japan and was adopted countrywide. Since 2017, FIRE has trained 300 health care workers, social workers, and community members to be Hepatitis Coordinators in two different provinces. The program has been very well received and supported by both communities.
The Hepatitis Coordinator position was created and modified from the Saga model to fit into Mongolia’s long-standing and current social systems including the health care and social service systems. This also includes Mongolia’s expansive registration system. Everyone in Mongolia is registered in a national registry. Everyone in Mongolia is also assigned to both a local clinic and local social welfare office. The Hepatitis Coordinators will work within these systems of Mongolia to locate individuals, assisting and advising them on the steps for testing and treatment regardless of whether or not they are insured.
The Hepatitis Coordinator model is not only useful for the elimination of hepatitis, it is a model that can be quickly modified and implemented to address other health issues including Covid-19.
Health Care Workers and Social Workers Training
Seventy-five social workers from the 12 counties and 41 social workers from the province center will be trained as Hepatitis Coordinators for a total of 116 social workers. The social worker Hepatitis Coordinators will be trained in their local communities over 13 different training sessions during the mobile screening. The 41 social workers in the province center will be trained during the first two weeks of the mobile screening in the province center. The remaining 75 social workers will be trained in 12 different training sessions during mobile screenings at each county clinic.
We will hold one training in the province center for health care worker Hepatitis Coordinators. There will be 24 health care workers from the county clinics and 16 from the province center clinics and hospitals for a total of 40 health care workers.
Both health care worker and social worker Hepatitis Coordinators will be given a Hepatitis Coordinator vest, bag, badge, education materials, teaching aids, and manual. The number of health care workers and social workers trained in the province center and counties will be proportional to their target populations.
Hepatitis Coordinators Responsibilities
Social worker Hepatitis Coordinators will contact every community member in their assigned community who needs to be tested until they are tested. The healthcare worker Hepatitis Coordinators will follow each person who tests positive until they are treated. They will help with the paperwork to overcome the bureaucratic challenges, coordinate blood collection, and schedule treatment visits.
Hepatitis Coordinators will also help in educating the community about hepatitis and raising awareness on prevention and treatment by visiting schools, government offices, and other places of employment.
Each social worker Hepatitis Coordinator will be responsible for reaching an average of 138 community members. Every health care worker Hepatitis Coordinator will be responsible for an estimated 71 people who are positive for HCV. Two social worker Hepatitis Coordinators will report to one health care worker Hepatitis Coordinator. The health care worker Hepatitis Coordinators will report to the health specialist in the provincial health department and FIRE. This will hold each Hepatitis Coordinator responsible for tracking their progress and ensuring that everyone in the province is reached.
Health Care Workers and Social Workers Compensation
These new responsibilities, while short-term, will greatly increase the responsibilities of both the health care workers and social workers who serve as Hepatitis Coordinators. These are some of the lowest-paid professionals in Mongolia, making an average of $250 a month. To ensure that they complete their responsibilities, we will supplement their income. We will have a contract with each Hepatitis Coordinator, and those who do not fulfill the expectations will not be paid. A FIRE representative will travel to meet with each Hepatitis Coordinator, collect their data forms as proof of work, and issue payment.
- Activity 5: Facilitating the collection of blood samples from the county clinics.
In order to properly treat each patient, physicians must have current lab tests before seeing their patients, including viral load tests. Once a month, one person will travel to each county to collect the necessary blood samples so tests can be completed and the physicians will have all the required information.
Sukhbaatar is the only province in Mongolia that has been approved to do viral load testing in the province center. This makes viral load testing easier than in almost all other provinces.
- Activity 6: Raise awareness of liver cancer and viral hepatitis among the rural community through community awareness and engagement activities.
Community Fair
In collaboration with the local health department, local organizations, and private entities, we will conduct a community awareness fair and opening ceremony in the province center at the start of the project to generate interest, gain support and enlist community leaders. It will include entertainment and family-oriented activities for all ages. We will educate community members through the distribution of pamphlets, posters, videos, information booths, and speakers. Some of the information booths will include doctors, informational handouts and displays, and interactive games.
Information, Education, and Communication (IEC) Material Distribution
We will also distribute 30,000 pamphlets (6,000 copies of 5 different pamphlets) throughout the province through the community awareness fair, physician counseling, and primary care clinics. The pamphlets will specifically focus on HCV, HBV, HCC, cirrhosis, and healthy liver—covering prevention, detection, screening, testing, treatment, and follow-up care. 500 hepatitis awareness posters will also be printed and distributed to clinics, hospitals, government offices, and large businesses around Sukhbaatar.
- Activity 7: Documenting Results and Reporting
The project will be extensively documented and evaluated at every step. This information will be used to complete thorough and detailed reports on the procedures, steps, and lessons learned to ease replication and scaling of the project for future projects anywhere in the world. A detailed final report and paper will also be written after analysis of the comprehensive data, to inform future projects and policies. This paper and report will be widely distributed in both Mongolian and English in Mongolia and around the world. The paper will also be submitted to international journals.
Mongolia has the highest rate of Hepatocellular carcinoma (HCC) or liver cancer in the world at six times the international average (Dondog B, Lise M etc., Jan, 2011), and among the highest prevalence of hepatitis B (10.6-11.1%) and hepatitis C (11-16%) (Ministry of Health, Mongolia, 2018) in the world. The high rate of HCC is due to the late diagnosis of viral hepatitis and other related liver diseases, including cirrhosis. 80% of Mongolians with HCC also have hepatitis (Oidov, B. etc., 2017) and 68% of those diagnosed with HCC die within one year of being diagnosed (Center for Health Development, Health Indicator, 2017).
In May 2017, the Mongolian Ministry of Health launched the national “Healthy Liver” Program (HLP) with the goal of eliminating hepatitis C by 2020. The Ministry of Health has recently extended this program until 2024. The Healthy Liver Program provides free testing for hepatitis B (HBV) and hepatitis C (HCV), free treatment for HCV, and discounted treatment for HBV for everyone over the age of 15 who has the government’s national health insurance. In 2019, MoH delegated the responsibility of screening uninsured individuals to the local governments in the provinces and districts of Ulaanbaatar (UB), without providing any additional funding.
Based on the HLP and a variety of other factors, Mongolia has the capability of becoming the first country in the world to eliminate HCV, further necessitating a comprehensive approach and investment towards elimination. Additional favorable factors include little to no stigma related to hepatitis, a 98% literacy rate (World Bank, 2008), only 3 million people in the entire country, and half of the population easily accessible in the country’s capital, Ulaanbaatar.
Despite these opportunities for success, according to the last MoH update on the HLP, as of November 11, 2019 only 45% of those eligible for the free screening across Mongolia had been screened, with UB reporting 38% and rural Mongolia at 26%.
In 2017 an average of 50,492 people were tested per month. In 2018, it was 35,467 per month and 15,358 per month in 2019. This is a decrease of 70% from 2017 to 2019. The roughly 60,000 people treated for HCV to date is 17%–25% of those suspected of being HCV positive. Since the start of the Health Liver Program there has been a considerable decrease in momentum for screening and treatment.
An assessment and evaluation of the Phase I project, interviews with health professionals and government officials from across Mongolia representing all leadership levels, as well as the results of the Knowledge Attitude and Practice (KAP) conducted in Dornod in 2017 indicates the largest barriers to testing and treatment and additional gaps in the HLP for rural communities include:
- Lack of insurance coverage for some of the tests required to start HCV treatment. These include the alpha-fetoprotein (AFP) test and FibroScan examination.
- Lack of specialty health care services available in rural communities, including FibroScan, oncology services, and liver cancer testing.
- Limited viral load testing outside UB, where half the population of Mongolia resides. Most of the viral load testing is done in UB with the collected blood samples being shipped from the provinces. While the National Insurance Fund (NIF) covers the cost of shipping, it is a slow and logistically challenging process with great potential for errors.
- Very little community awareness related to hepatitis or the Healthy Liver Program. A KAP conducted in Dornod province by FIRE in October 2017 showed that only 1.8% of the participants had “good” knowledge of basic hepatitis, including how it is transmitted and if a vaccine or a cure is available.
- The number of people excluded from the Healthy Liver Program for lack of national health insurance is unknown. To be eligible for the Healthy Liver Program, you not only need to have current insurance, you must have also had insurance for at least 12 prior months consecutively. Most of the herders, unemployed, and self-employed people, especially in rural areas, do not have consistent health insurance and therefore do not qualify for the free government screening or life-saving treatment. The government counts people as insured even if they had insurance for one month during the 12-month calendar year. Therefore, many of the people the government tracks as having insurance are still unable to participate in the Healthy Liver Program.
- Long wait times and difficulty connecting patients to care, especially for liver cancer. Patients must travel to UB and often wait up to two months to receive confirmation diagnosis and to be seen by an oncologist. This is logistically and cost-prohibitive for most rural Mongolians.
Once this project has been demonstrably completed, it can be replicated across Mongolia with targeted training and technical support. While working in rural Mongolia is challenging, it is not unique. Many communities around the world work in a similar, tiered health care system with many of Mongolia’s obstacles. This project can also serve as a model for other communities.
The hepatitis coordinator system and training program developed as part of this project is specifically designed for immediate disease prevention and management. This system could be used to quickly disseminate information, testing, treatment and vaccinations throughout a community regarding other health issues including Covid-19.
We will work with the following organizations to harmonize the synergies for these objectives with national initiatives. The organizations supporting this program are:
- Mongolian Ministry of Health (MoH) – is the government agency leading the health sector of Mongolia. MoH will approve the training materials and continuing medical education (CME) credits. All of the activities conducted in this project will be in support of MoH guidelines, policies, initiatives and Minister’s Orders.
- World Health Organization (WHO) – Western Pacific Regional Office (WPRO) and Mongolia Office – The WHO Representative’s Office in Mongolia is the official representation of the World Health Organization in the country. The WHO Representative’s Office works closely with the Ministry of Health in Mongolia and other local and international partners. All of the activities in this project will be in alignment with WHO guidelines, initiatives and policies.
- National Center for Communicable Disease (NCCD) – is one of the 13 specialized tertiary hospitals in UB. It is responsible for managing and organizing all the activities on prevention, control, surveillance, diagnosis, and treatment of communicable disease as well as providing technical support. They will support the mobile screening activities in Sukhbaatar province with specialists including ultrasound specialists and hepatologists.
- National Cancer Center (NCC) – is also one of the 13 specialized tertiary hospitals in UB. It provides services on early cancer detection, prevention, diagnosis, and treatment while simultaneously conducting research and training for medical specialists. NCC will also provide technical support and support the mobile screening with ultrasound specialists and oncologists.
- Sukhbaatar Province Governor’s Office – is the state leadership for Sukhbaatar province. It is responsible for organizing and implementing the national Government’s policies at the local level and protecting the wellbeing of the local communities. It will provide logistical support throughout all aspects of the Sukhbaatar micro-elimination project. They will also provide in-kind support for Hepatitis Coordinator’s wages and the blood collection for viral load testing.
- Sukhbaatar Province Health Department – is responsible for organizing the implementation of the health sector policy at the local level and protecting the health of the population of the Sukhbaatar province. It will provide logistical and technical support throughout all aspects of the project. They will also provide in-kind support for Hepatitis Coordinator’s wages and the blood collection for viral load testing.
- The Liver Center of Saga University, Japan – is a leading institution in prevention, treatment and control of liver disease in Japan. Saga University will bring the latest technology and renowned specialists to this project with the Fibroscan training and use of their FibroScan machine for the duration of the project.
The following outcomes are expected from this 14-month program.
Screening and HCV Elimination
- One province in Mongolia will eliminate HCV
- Assisting 2,500 Mongolians through the necessary steps and tests to access free HCV treatment
- Assisting thousands of Mongolians with the necessary steps and tests to access subsidized HBV treatment
- Starting 2,200 currently uninsured people on health insurance enabling them to better take care of themselves
- 7,400 people tested for viral hepatitis B and C covered by the Healthy Liver Program
- 8,600 uninsured people tested for viral hepatitis B and C
- 3,000 people tested for liver cancer through a blood test
- 5,000 ultrasound examinations with specialists
- 3,000 FibroScan examinations with specialists
- 300 people seen by an oncologist
- Increasing voluntary participation in the Healthy Liver Program and national health insurance
- Development of a complete and quick system to eliminate HCV among the insured and and rural individuals
- Detailed reporting of methods and results for easier replication anywhere in the world
Health Care Worker Capacity Building
- Training and support for 40 rural health care workers and 116 social workers to be Hepatitis Coordinators to provide vital support to their communities
- Dozens of health care workers trained through intensive hands-on and “shadow training” of visiting specialists as they examine and counsel participants
- One health care worker trained to be a FibroScan specialist for the province by a specialist from Saga University in Japan
Community Awareness
- 25,000 rural community members educated about hepatitis and the Healthy Liver Program
- Comprehensively educating thousands of patients to make life-saving health changes through community awareness activities and mass distribution of pamphlets
- 500 posters distributed to all the health clinics and hospitals in Sukhbaatar province
- 30,000 pamphlets (6,000 copies of 5 different pamphlets) distributed throughout Sukhbaatar province
Reporting, Publication and Post-implementation Communication
- Final reports will be designed and distributed across Mongolia and the world
- The project will be submitted for publication in international journals and international conferences
- Press releases will be distributed to TV and newspapers around the world about both projects
This program aims to address the following as it relates to sustainability within Mongolia:
- Filling the awareness, testing and treatment gaps of the MoHs National Healthy Liver Program in rural Mongolia to help MoH accomplish its goal of eliminating HCV
- Eliminating HCV for every person in one province
- Starting 2,200 people on health insurance enabling them to better take care of themselves
- Assisting thousands of Mongolians with the necessary steps to access free HCV and subsidized HBV treatment
- Supporting the government’s database for long term patient support
- Empowering rural health care workers with necessary information about liver disease, ultrasound and FibroScan to better assist and treat their patients
- Training 40 rural health care workers and 116 social workers to be Hepatitis Coordinators so they can provide long-term support to their communities
- Comprehensively educating thousands of patients to make life-saving health changes
- Increasing voluntary participation in and awareness of the Healthy Liver Program and national health insurance
- Development of a complete system to eliminate HCV among 50% of Mongolia’s population
- Detailed reporting of methods and results for easier replication anywhere in the world