Story of Ya Yun and Xiao Jie, China
It was in 2006 that Ya Yun first learnt of his chronic hepatitis C virus (HCV) infection. He was attending a rehabilitation programme for people who inject drugs, taking methadone oral substitution treatment, which improved his health and well-being enormously.
But at the back of his mind, he knew of the undue suffering caused by liver disease due to HCV infection. He saw his peers from the methadone programme developing bulging bellies and chronic fatigue – so much so that the conditions affected their daily activities.
“I learnt that HCV is usually asymptomatic early in the disease, not causing many health problems,” said Ya Yun. “But over time, the liver disease progresses, and once a person reaches the late stages, very little can be done.”
One day he received the dreaded news that his wife, Xiao Jie, was also infected with HCV. The couple joined millions of other people living with chronic HCV in China, facing the seemingly impossible dream of being cured. “We were afraid,” said Xiao Jie. “Besides, we could not save up enough money to get us both treated. So we just prayed and hoped that our disease would not progress, and everything would be OK.”
In 2014, while working for the newly established community rehabilitation centre, Ya Yun heard that a “game-changer” cure for HCV had been developed. The oral medicines called direct acting antivirals (DAA) can cure HCV in 9 out of 10 people within just 3 months. But not only was the price tag of US$ 84 000 exorbitant, the treatment was not available in China.
“Never in my wildest dreams did I imagine these life-saving drugs that can cure HCV,” said Ya Yun. “But alas, they were so expensive and out of reach. My hopes crashed. I have seen my peers die from HCV, and I was afraid for myself and my wife. Every time the word HCV jumped into my mind, I felt depressed.”
In 2016, 10 years after learning his HCV status, Ya Yun and his wife received HCV treatment at a very low cost, thanks to some financial assistance from an NGO. The couple completed the 12-week DAA treatment and they have both achieved cure (called “sustained virological response”).
“My heart was pounding as I waited for the final results to see if the treatment was successful,” recalled Xiao Jie. “When the doctor told me that the HCV had been completely cured based on a very precise (high sensitivity) HCV viral load test, I cried with happiness! I was so relieved.”
Today, Ya Yun and Xiao Jie have another dream. “We hope that more and more people living with HCV all over the country can receive this cure,” said Ya Yun. “We were lucky to be able to access the cure. But really, these medicines need to be provided in our health-care system, so that all ordinary people can access them.”
Story of Tsetsegmaa Namjil, Mongolia
Tsetsegmaa Namjil, a 58-year-old shoe seller from Mongolia, fought a decade-long battle with liver disease.
Tsetsegmaa trained as a factory shoemaker in the former Czechoslovakia in the late 1980s. By the time she returned to her own country, all the factories where she could have worked had been closed down. She opened a shoe stall in the largest open-air marketplace in Ulaanbaatar, Mongolia, and sold shoes all year round, regardless of the summer heat or freezing winters.
"I fell sick with hepatitis twice in my childhood; perhaps it was then that I contracted hepatitis C virus (HCV),” Tsetsegmaa explains. “I had to buy medications to keep my viral count low. I used to spend 30–40% of my income on medications."
HCV caused Tsetsegmaa to get tired quickly and often. She desperately sought treatment, even travelling to Japan – only to find that the cost of health care there was so high that she could not even afford screening.
About 18 months ago, Tsetsegmaa's doctor informed her that drugs to treat HCV were now available in Mongolia. This was around the time the government rolled out the “Healthy Liver” National Programme.
"I think I was among the first people to reap the benefits of the ‘Healthy Liver’ National Programme,” says Tsetsegmaa. “I bought the 3-month treatment for HCV for 2.5 million tugriks [around US$ 1300]. I’ve heard that these drugs cost a fortune in other countries."
After completing her therapy, Tsetsegmaa was not only cured of HCV, she was also offered free testing for hepatitis B for herself and her family. It was a relief to learn that no one in her family – her husband, son or daughter – had hepatitis infections, which are rampant in Mongolia.
Being cured of HCV means a lot to Tsetsegmaa – physically, emotionally and also financially. "Now that I'm cured of HCV, I can even afford a trip abroad,” she says excitedly. “I am planning a trip with my friends who studied in Slovakia to celebrate the anniversary of our friendship and our graduation. We’ll stay there for 2 weeks this summer. Everything is arranged and I’m saving money for the trip."
Story of Temur Radiani, Georgia
Temur Radiani, a 62-year-old biologist from Georgia, accidentally learnt that he was carrying chronic hepatitis C virus (HCV) infection 10 years ago. He thinks he was possibly infected in 1996, when he had 2 operations on his leg.
"I still remember how painful it was to learn of my infection. I lost a couple of close friends to HCV, so I knew very well what kind of problem I was facing. Some of my friends underwent treatments with medicines available at the time, and I personally witnessed what the disease cost them both physically and morally, not to mention financially," said Temur Radiani.
Despite this prospect, he firmly believed he had to fight for his life. He not only revealed his diagnosis to his family and friends, he started collecting all information on HCV, the epidemic in his country Georgia, and the existing treatments. "I never hid my diagnosis from my family and friends. Why would I? It was with their moral and physical support that I learned to live a new reality," says Temur Radiani.
During 2013–2016, Temur Radiani underwent interferon-based therapy that lasted, on and off, for 15 months. He received a lot of support, including financial support from his friends, but unfortunately, the treatments were not only extremely costly, they were also ineffective.
At the end of 2013, he was told by his doctor that a new drug had been invented that could effectively cure HCV. He was also told that the medicine was totally inaccessible to him, due to its high price. "I was desperate and hopeless. I was thinking of my family and the people who, like me, were badly in need of the new treatment,” says Temur Radiani. “Two words stuck in my head: Maybe, someday?”
In 2016, Temur Radiani was treated, along with thousands of other Georgians struggling with HCV, with curative therapy based on WHO-recommended direct-acting antivirals. "One fine day, I was born again. What I was dreaming of came true," he says.
"In my struggle for life, I learned that whatever happens, you should never give up. You should keep fighting, and eventually, with a little luck and a lot of help from kind people, the virus will be defeated! I am sure that in a few years, we will all be celebrating the elimination of HCV in my country," he concluded.
Story of Sughran Bibi, Pakistan
Sughran Bibi is a 36-year-old mother who contracted hepatitis C virus (HCV) following a blood transfusion. She lives in Bangla Mor, Shuja Abad,of the Multan district in the Punjab province of Pakistan.
Two years ago, Sughran Bibi’s child was delivered by caesarean section. She experienced severe anaemia during her pregnancy, and had to be transfused with blood during the surgery. Soon after the delivery, Sughran Bibi was diagnosed with HCV.
The diagnosis was particularly distressing for Sughran Bibi, as she had watched her mother suffer from HCV as well. The disease had a huge impact on her wellbeing: she experienced occasional memory loss, felt lethargic, and lost interest in her home and family. She consoled herself by relying on a local Ayurvedic expert and spent her few resources on treatments that did not relieve her sickness.
Starting in June 2017, HCV treatments were rolled out through primary and secondary health care departments in her province. Sughran Bibi was finally able to receive proper testing and treatment at her local clinic.
After 6 months of therapy, Sughran Bibi was cured of HCV infection. “I am happy and thankful to the Hepatitis Control Programme,” she said. Having completed her treatment, she feels rejuvenated and energized again.