In Mongolia’s National Cancer Center, an imposing cement structure in Ulaanbaatar, a patient named Chantsal was recovering from surgery. A retired radiology tech, it was a matter of chance that had brought him in for a screening. “It was my children’s vacation so I took them there for a dental checkup, and I just thought that I should do an ultrasound check.” The exam revealed a large tumor on his liver.
Mongolia has the world’s highest rate of liver cancer mortality—six times the global average—and the number is climbing. In this context Chantsal was a relatively fortunate case; by the time most Mongolians with hepatocellular carcinoma (HCC) are diagnosed, their disease is already inoperable. This was the case for Chantsal’s brother when he developed liver cancer two years ago. “He was working in the countryside at that time and the only doctors he had were the soum [district] doctors and then he just died,” Chantsal recalled. The surgeons at the National Cancer Center, where nearly all the country’s cases are referred after diagnosis, estimate that only 10% of Mongolians diagnosed with HCC are identified early enough to be eligible for surgery.
No one is more aware of the burden of liver cancer in Mongolia than Mongolians themselves. “Every family has lost someone to HCC,” says Tsendsuren Oyunsuren, a leading researcher into the Mongolian epidemic. Her grandmother and father died of HCC, which inspired her to enter the field. Mongolia’s political class is not immune, either. In 2009, Prime Minister Bayar Sanjaa announced that he was a carrier of hepatitis C, and he ultimately resigned from office to seek medical treatment.
HCC accounts for nearly half of cancer mortality in Mongolia. At the WHO’s last measure, one of every ten deaths in the country was due to HCC or its frequent precursor, cirrhosis. In turn, nearly all Mongolians suffering from liver disease carry hepatitis B or C viruses or both, and researchers agree that those infections are the main causes of liver disease in the country. More than a quarter of Mongolians are chronic carriers of at least one of the viruses, and almost none are aware of their status.
The Asian region has historically been burdened with a high prevalence of hepatitis B so Mongolia is not an outlier in this regard. A national childhood vaccination campaign, initiated in 1991, has protected younger cohorts from the virus and holds the promise of eliminating it from the country over the next generation.
It is the additional burden of hepatitis C, for which no vaccine currently exists, that distinguishes Mongolia from the rest of Asia. Although unsafe surgical procedures and dental practices are thought to play a role, much remains unclear about the virus’s origins in the country and the mechanisms of its continuing transmission. Absent a solid understanding of this epidemiology, the country’s hepatitis C prevalence continues to rise. Alcohol use, which hastens progression to cirrhosis for those with concurrent viral infection, is also widespread in Mongolia, compounding the epidemic.
Chronic carriers of either virus are usually asymptomatic for decades but face a great risk of developing cirrhosis and HCC over their lifetimes. So even if new cases of hepatitis in Mongolia are curtailed, the high proportion of people already carrying the viruses portends a sustained increase in the burden of liver disease. “This won’t just last five more years,” asserts Tsiiregzen Enkhamgalan, one of a handful of the country’s hepatobiliary surgeons tasked with treating these patients. “We expect forty more years to face the same conditions.”
The global health community has given little attention to liver disease relative to other public health issues, and Mongolia’s experience is no exception. "The utmost priority is given to HIV, TB, and infectious diseases such as avian influenza," commented Zolbayar Ganbold, an officer in the Ministry of Health's division of international cooperation. "Viral hepatitis and liver disease are very much less targeted."
UN agencies support a set of burgeoning HIV programs in Mongolia although as of 2009 the cumulative total of AIDS cases there numbered just 62. And the United States’ Millennium Challenge Account has recently begun supplying significant funding for non-communicable diseases, but their compact focuses on breast and cervical cancer and makes no mention of HCC.
Still poor by global standards, Mongolia is thus in the challenging position of dealing with a heavy burden of non-communicable disease that is more typical of the developed world, and which demands a rich country’s resources and functioning health system.
The Mongolian Government plans to strengthen the health system to address non-communicable diseases. “We are making some organizational and strategy changes because we have to improve early detection and control of non-communicable diseases, including liver disease, at the primary health care level,” says Gombodorj Tsetsegdari, a senior officer in the Ministry of Health. But such changes will be a challenge, and the extensiveness of the Mongolian countryside is daunting. It is the least densely populated independent country on earth, and 60% of the population resides outside the capital.
Even if diagnostics improve, it isn’t clear what treatments will be readily available. Ideally, carriers of viral hepatitis would be identified and treated long before the infection damaged their livers irreparably. But neither antiviral treatment for hepatitis B nor interferon-based therapy for hepatitis C are presently covered by the national health system, and their high price puts them well out of the reach of most Mongolians. “Treatment is very, very costly,” Tsetsegdari says. “That’s why we don’t have [them].”
Even for services that the public system covers, much of the financial burden ultimately falls on patients. In regards to surgery at the National Cancer Center, Enkhamgalan explains: “the government says that all cancer care is under the control of government, that all costs related to cancer care come from the government. But the government doesn’t give a sufficient amount of money to pay for them.” He estimates that patients must defray about 80% of the cost of imaging tests, surgical equipment, and sutures. Perversely, non-surgical therapies such as radio frequency ablation or transcatheter arterial chemoembolization are rarely utilized at all because those procedures are not covered by insurance, even though they are less invasive than surgery and are associated with better outcomes for some patients.
In wealthier countries, all these treatments serve primarily as bridges to liver transplantation, but in Mongolia they are themselves the last recourse. A few Mongolian physicians dream of beginning a transplant program in the country, but most acknowledge that it’s not realistic in the short term. “[Transplantation] is like the diamond in the crown,” said VSO country director Indermohan Narula, who has been a technical adviser to the Ministry of Health since 1995. “It’s just decorative; it’s too expensive to actually manage.”
By necessity, then, Mongolia has turned to palliative care as a final but valuable service for its terminal cancer patients, and with noteworthy success. The National Cancer Center established a palliative care wing in 2000 but additional policy changes were needed to make the necessary drugs and manpower available. Tserendorj Gantuya, now its chief palliative care physician, began working on the wing eight years ago. “I always remember how before 2006 it was so difficult, how my job made me so nervous. Every day we received patients with really, really severe pain and we didn’t have any painkillers and the doctors didn’t know how to relieve the pain. And the patient’s caregiver was so nervous because the patient had severe pain and the doctor couldn’t do anything.”
Outside parties, particularly the Open Society Institute, supported local advocates as they integrated palliative care into the national health care system. In 2005, importation quotas for injectable and oral morphine formulations were greatly increased, and national standards for their use were issued. Reformers also added palliative care to undergraduate medical education and initiated a four-year course for social workers.
The workload of the palliative care wing has expanded, as has their staff. “In 2003, we received only 100 patients a year,” recalls Gantuya. “Now in the inpatient unit alone we see 700 patients, and in the ambulatory service we see another fourteen patients every day.” Where once they employed just two doctors and six nurses, the staff now includes three doctors, eleven nurses, a dietician, a pharmacist, and a social worker. Several private hospices have also sprung up in Ulaanbaatar, mostly operated by missionary groups.
But these services are few compared to the scale of the county’s needs. Palliative care is not yet widely available outside of the capital, so patients must often travel great distances for treatment. At Hope Hospice, one such family hovered anxiously around the ashen figure of their father, who was dying of HCC. Herders by trade, they had journeyed over a thousand kilometers to bring him to Ulaanbaatar for care, pulling their children from school and leaving their livestock in the care of friends.
Advocates of palliative care hope to soon close some of those gaps. Mongolia’s health insurance law was recently revised to begin reimbursing district hospitals for palliative services so that patients can obtain care closer to home. Cancer Free Mongolia, an organization founded by first lady Bolormaa Khajidsuren, has since established a model palliative care facility in one of Mongolia’s six districts, and the Ministry of Health has promised to set up comparable services in the others soon. And in March of 2011, physicians across the country will participate in a formal training on pain-management. “Family doctors can prescribe morphine, but they don’t know how to use it so they are anxious,” Gantuya opines. “After the training, I hope they will have more confidence.”
For now, though, needy patients outnumber spaces and the palliative care wing must limit inpatient stays to ten days. HCC cases fill two-thirds of their beds and, barring a breakthrough in the way that viral hepatitis is diagnosed or treated, conditions are likely to remain this way. For the foreseeable future, then, dying in a peaceful place and free of pain may be the most that Mongolian HCC patients can hope for.