Hepatitis: a crisis in Mongolia
Since the arrival of the Year of the Water Snake, Oyunsukh Dashnyam, the eldest of three children of an ordinary working family in Mongolia, has faced anxious thoughts on one topic: how to keep her father alive.
A former military man turned miner, 57-year-old Oyunsukh’s liver disease progressed rapidly. He developed a sack-like belly during Lunar New Year celebrations in 2013 and was diagnosed with ascites and a high hepatitis C viral load. In April doctors told Oyunsukh he had cirrhosis1. In October he was diagnosed with liver cancer.
“We took our dad to South Korea in November, hoping that we could arrange a liver transplant for him there,” says 30-year-old Dashnyam, a kindergarten teacher. “However we could not cover the costs of this surgery and spent all the money we had on having dad’s blood vessels that were feeding the four tumors in his liver tied up and the treatment that followed.”
The family understood that without a liver transplant they may lose their father to liver cancer. Mongolia has the highest rate of liver cancer in the world: prevalence in Mongolian men is eight times higher and in women 16 times higher than the global average.
By the next year, the Year of the Blue Horse, Oyunsukh had developed three more tumors in his liver. Dashnyam and her siblings researched liver transplantation extensively. The family collected its savings – profits from selling underwear and socks at Ulaanbaatar’s largest open-air market.
Surgery in India was considered, but beyond the family's means at US$ 50 000. The cost elsewhere was more prohibitive – in the Republic of Korea for example the surgery cost US$ 300 000.
“We had no choice but to consider having the surgery performed here, in Mongolia” says Dashnyam. However she was told to call back in four months to get her father’s number on the waiting list. “In Mongolia a liver transplant costs 65 million Mongolian Tugrik (US$ 35 000). But we’re not even on the waiting list,” says Dashnyam whose two younger siblings are willing to donate parts of their own livers to their father. “I’m willing too,” says Dashnyam. “But I cannot. The doctors said I am overweight so my liver isn’t suitable”.
Oyunsukh, does not want any surgery. “It’s too risky for my children and too costly – I do not want them to sacrifice everything for me. They need to raise their own children and live well themselves.”
Hepatitis – the “Number 2 Killer in the Nation”
“Hepatitis B and C are the number two killer of our people, after heart and coronary diseases,” says hepatologist Jazag Amarsanaa, the member of the capital city parliament and the owner of the leading private hepatitis clinic and laboratory in Mongolia: “We lose far too many of our people to liver cancer and cirrhosis. It’s a real threat”. Indeed, according to a 2003–2005 prevalence survey hepatitis C had affected 10–15% of Mongolia’s population. By 2011, 10–22% of Mongolians were affected by hepatitis B.
“There is rarely a family in Mongolia which does not have somebody infected with hepatitis B or hepatitis C,” says Oidov Baatarkhuu, President of the Mongolian Association on Study of Liver Diseases (MASLD).
A number of studies indicate that the peak of viral hepatitis transmission was in the 1970s and 1980s before disposable syringes were available in Mongolia. Poor infection control, re-use of syringes in health settings and administering injections at home led to the rapid spread of viral hepatitis.
Currently a hepatitis B is significantly high among people from 19–40 years of age and hepatitis C is spread among people from 19–65 years of age2. “People in the sexually active age group are still at high risk of contracting hepatitis B whereas there is no clear age distinction in the hepatitis C spread although a higher number of hepatitis C cases are found in people older than 40. This means that there are common risk factors present for all adults,” explains Dorj Narangerel, senior officer in charge of communicable diseases control at the Ministry of Health and Sports (MOHS).
A 2013 national study on hepatitis prevalence and risk factors, found hemodialysis or dental treatment patients are five times more likely to contract hepatitis B than people who have not had such procedures. Patients undergoing a surgical procedure or receiving blood products in a hospital are twice as likely to contract hepatitis C3.
Oyunsukh says he must have contracted the virus in a private dental clinic when having a root canal treatment. “There was a lot of blood,” he recalls.
The introduction of hepatitis B vaccine in 1991 for the child immunization schedule in Mongolia as well as the usage of disposable syringes since the 1990s was a huge breakthrough in fighting transmission. “Children born in the 1990s who now are young men and women in their 20s as well as the younger generation do not have to fear hepatitis B anymore,” says Dr Soe Nyunt U, WHO Representative in Mongolia. The National Strategy on Fighting Viral Hepatitis 2010–2015 has a goal of reducing new hepatitis cases registered each year to 10 cases per 10 000 people. By 2013 this number had fallen to 9 cases per 10 000 due to the successful hepatitis B immunization program, a reduction in new hepatitis C infections and the introduction of the hepatitis A vaccine in 2012.
Despite the slight drop in numbers of new viral hepatitis cases in Mongolia, statistics reveal that every year around 600 cases of hepatitis B and 140 cases of hepatitis C are registered. “If hepatitis B infection is contained due to vaccinating children, the trend for hepatitis C has remained the same in the last ten years,” says Dr Narangerel. “It’s a silent disease and when there are no serious symptoms initially people do not refer to hospitals. Often one learns about having a hepatitis C or hepatitis B infection only by chance.”
In the last five years Mongolia has budgeted about 135 million MNT for viral hepatitis treatment. According to the National Centre for Communicable Diseases (NCCD) this amount is sufficient only for treating 6 to 8 patients for hepatitis C. There have been 30 chronic hepatitis B and hepatitis C patients treated in the public sector health-care system, all at the NCCD. The remaining 300 000 chronic hepatitis B and hepatitis C patients go without treatment.
Money or Life?
Dr Lunkhuu Altantsetseg is a manager of the private Happy Veritas clinic popular among patients with hepatitis. The clinic's day rate, including food, a bed and basic treatment, costs from 35 000–50 000 MNT (US$ 19-27). “However the key medications–pegylated interferon and ribavirin–must be provided by the patients themselves. They spend 300 000–400 000 MNT (US$ 162–217) per week on one injection of interferon”, says Altantsetseg. Many patients and their families sell property and incur debts to pay for these services.
It’s not much different for Doljinsuren Altantuya who is unemployed. She was diagnosed with cancer and her two sons have hepatitis B and C. They receive a monthly disability benefit totaling 450 000 (~US$ 244) MNT. Altantuya brought her 26-year-old son with ascites due to hepatitis B infection to the Happy Veritas clinic for treatment: “It cost us over 2 million MNT (US $1000) to spend 10 days in this clinic including all the extra medications we needed to provide ourselves,” says Altantuya. The family of six adults and two young children lives on 1.5 million MNT (US $800) including the pension and Altantuya's husband's wages as a truck driver. To have her son treated at the clinic Altantuya left all her golden jewelry in a pawn shop. “I am worried for my husband and daughter – they must take a hepatitis test but we simply cannot afford it,” she says. At the public NCCD one hepatitis B or hepatitis C DNA or RNA confirmation test costs from 150 000–180 000 MNT (US $82-98). Experts agree that testing of those at risk is the first step in fighting viral hepatitis, yet testing remains unaffordable for many. The Mongolian rural and district clinics do not have sufficient laboratory capacity to detect infection or do viral load testing. This is done only at the NCCD and some private hospitals.
Unable to afford expensive treatment Altantuya uses traditional remedies: eating raw wild boar’s liver that costs 150 000 MNT (US$ 82) for a four-month supply; and drinking a broth of rutting camel hair sold in match boxes worth 20 000 MNT (US$ 11). “It’s a much more affordable and efficient treatment,” says Altantuya.
“People are desperate to get any kind of help,” says Naranbaatar Dashdorj, Board Chairperson of the private Onom Foundation. The Foundation has launched projects for universal screening and prevention of viral hepatitis and working towards hepatitis C elimination. The NGO had set up a free telephone line and texting service, which people can access to have their names, IDs and the type of infection registered. “We are going to match it with our doctors’ database so we can connect patients to doctors,” says Naranbaatar, who lost his own uncle to cancer and whose parents have chronic hepatitis. “We also would be able to tell people who is a good doctor and which one is the best lab.” Under its viral hepatitis prevention, treatment and elimination programme the Foundation is aiming at conducting hepatitis B surface antigen and anti HCV rapid tests all over Mongolia at 4000 MNT against 10000-20000 MNT that it costs now. “According to our estimates only 30 out of 100 infected people do know that they are infected. Tests are unavailable in many places in the countryside. So we will bring rapid tests to family clinics to be able to offer them to everyone as testing is hugely important,” says Dr. Naranjargal Dashdorj, CEO of the Onom Foundation. Dr. Naranjargal acknowledges that rapid tests are not 100 percent reliable so those who get positive results need to undergo further tests. Together with the Ministry of Health and Sports the Foundation started a public campaign to promote testing and increase public awareness about viral hepatitis.
More Affordable Treatment
News that a new hepatitis C treatment will be available and affordable through tiered-pricing strategies has stirred public attention. The hepatitis C anti-viral drug, the sofosbuvir of Gilead Sciences, has just been registered in Mongolia but has not entered the market yet. The large pharmaceutical company has listed Mongolia as one of 91 countries eligible for lower cost medications through tiered pricing. Public health experts note that while the tiered pricing strategy is welcome, making long-term commitments is undesirable when market forces may drive prices further down. “At the beginning of the 1990s, HIV treatment cost US$ 10 000–20 000 per month. Now the cost has dropped to US$ 120 per year. The same is expected with hepatitis C treatment. More companies are coming up with effective combination treatment formulas. This will reduce prices and improve the quality and variety of effective combination drugs” says WHO’s Dr Soe.
Another drug of the Gilead Sciences, this time a combination of ledipasvir-sofosbuvir, is expected to be registered soon. “Administration of sofosbuvir is highly effective in treatment of the hepatitis C only when it is combined with ribavirin and pegylated-interferon, while the new combination drug is to be taken solely, one pill a day,” says Dr. Naranjargal. However she also notes that without a government intervention and funding support too many carriers of the hepatitis C won’t be able to afford treatment that still will be expensive for the majority of the Mongolians. She brings an example of a country whose government declared its commitment to eliminate viral hepatitis. “I just attended a conference of the European Association for Study of the Liver last month in Vienna at which the government of Georgia announced about allocating 2 mln US$ on treatment of viral hepatitis and the Gilead made a commitment of treating 5000 Georgians for free”, Dr. Naranjargal says.
While the drugs are being registered the MOHS is working on issuing a WHO advises-based hepatitis C diagnostics and treatment guidance to doctors and medical practitioners. On a larger scale the MOHS is working towards submitting a newly devised National Programme on Combating Viral Hepatitis to the government.
“The final draft of the programme is to be discussed by the technical committee in mid-May and hopefully endorsed by the cabinet soon after”, says Dashdorj Atarmaa, the Vice-Minister for Health and Sports.
According to Dr. Atarmaa the new comprehensive programme highlights prevention, diagnostics and treatment of viral hepatitis as well as purchase of necessary equipment and medical supplies. However there is no commitment to cover treatment costs. “Viral hepatitis treatment is indeed expensive and a course of, for example, hepatitis C treatment with sofosbuvir at US$ 980 would come up to US$ 2000-3000 with purchase of ribavirin and interferon,” says D.Atarmaa. “The state policy however is to prioritize treatment of STIs which are reported to have comprised over 40% of all communicable diseases spread among the 3 million of the Mongolian population according to the 2014 data. So we need to prioritize.”
“I only wish he lives for another three to four years”
Dashnyam wishes the country had more medical teams to assist liver cancer patients by performing liver transplantation surgeries. “I am very impressed by the professionalism of our doctors, but it seems there is only one team of doctors that performs liver transplant surgeries at the First State Hospital in Ulaanbaatar and even this team lacks necessary medical equipment,” says Dashnyam. She recalls how her father tried to remain cheerful during a surgical procedure, where he was pierced by a 30-centimetre-long needle: “[In Mongolia] anaesthesia seems to be provided in low doses intravenously and my father felt everything,” says Dashnyam.
“After we learnt about our dad’s infection we all went to test for viral hepatitis along with our kids” says Dashnyam. Only their mother was infected. She has had chronic hepatitis B for years and now suffers from cirrhosis. “And again we believe she had contracted it when she had her appendix removed in a country-side clinic,” says Dashnyam.
To help Mongolia develop a comprehensive strategy including an action plan and feasibility study on fighting viral hepatitis, a team of medical professionals from the WHO Regional Office for the Western Pacific visited Mongolia in 2014 and early 2015. The experts applauded the Mongolian Government's Asian Development Bank project on improvement of infection control in public hospitals and noted that consensus-building among stakeholders and across sectors on a plan to move forward is essential. “Although there is more testing and treatment in private clinics, ideally there needs to be a comprehensive strategy for hepatitis B and hepatitis C including infection control, prevention and linking testing to treatment to ensure a truly systematic approach. The decision to turn a strategy into a programme is a plausible step forward as programmes have budgets attached to them,” notes Dr Nick Walsh, Viral Hepatitis Medical Officer, WHO.
Meanwhile Dashnyam stresses the importance of educating children and parents about viral hepatitis and teaching them how to protect themselves from this deadly disease. Unable to afford treatment abroad, and waiting months to get onto a waiting list for liver transplant surgery, the young woman seems to have left everything now to fate.
“I only wish our father lives for another three to four years”, says Dashnyam: “That itself would be a blessing”.
1 Cirrhosis is scarring of liver tissue so substantial that normal liver function is lost. Typically, this results in a swollen belly and legs, blood clotting problems and the risk of serious infections. Cirrhosis linked to hepatitis C can lead to liver cancer.
2 Bekhbold Dashtseren, Bayarmagnai Bold, Naranjargal Dashdorj, Dawghadorj Yagaanbuyant, Department of Infecious Disease, HSUM, Onom Foundation “Epidemiological Study of Prevalence and Risk Factors for Viral Hepatitis among Apparently Healthy Mongolians”.
3 Bekhbold Dashtseren, Bayarmagnai Bold, Naranjargal Dashdorj, Dawghadorj Yagaanbuyant, Department of Infecious Disease, HSUM, Onom Foundation “Epidemiological Study of Prevalence and Risk Factors for Viral Hepatitis among Apparently Healthy Mongolians”.