Kularb Dangtong is the leader of a comprehensive HIV continuum of care center (CCC Center) in Thailand. CCC Centers are recognized by the Ministry of Public Health and state hospitals; PLHIV volunteers work at CCC in over 200 state hospitals as HIV-related services co-providers. Kularb is also a member of the Thai Network of People living with HIV (TNP+).
Photo by @Gemma Taylor
In 2018, Kularb was diagnosed with hepatitis C virus (HCV), thanks to guidelines that recommend HCV testing for all PLHIV.
“I would never have known that I had it, because there were no symptoms, no signals at all,” she said.
But there were no protocols in place to refer her for HCV treatment. Kularb noticed the irony of getting screened and diagnosed, without any information on how to get treated for HCV.
TNP+ reinforced the message that HCV is treatable, and suggested that Kularb contact a doctor, because HCV is curable, and, if untreated, can lead to liver cirrhosis and liver cancer. Kularb was sent to a nearby provincial hospital, where there was a specialist who could prescribe HCV treatment.
Even though it was simple for her to get HCV testing, Kularb’s road to treatment HCV was not easy. She faced several barriers: cross-provincial travel to faraway hospitals where there was a long wait to see a specialist and meeting the eligibility criteria for treatment. Kularb did not meet the eligibility criteria, so her case was not considered urgent. The only recommendation she was given was for yearly follow-ups, to see when she would become eligible for treatment.
Kularb was worried. Even though it was only once a year, Kularb didn’t want to go see the doctor and she wasn’t surprised to see that many people with HCV just gave up. Thailand was treating HCV with pegylated interferon and ribavirin, which has severe side effects and is not very effective for people who are co-infected with HIV and HCV. Although much more effective oral drugs with mild side effects, called direct-acting antivirals (DAAs), had become available. Thailand did not provide them because they were priced out of reach. Kularb was not sure that she would be able to tolerate 48 weeks of pegylated interferon and ribavirin after seeing what her friends had endured.
“They had to travel far to the hospital and spent hours in queue to see the doctor to get a shot of pegylated interferon (once a week for 48 weeks for people with HIV/HCV co-infection), and had severe side-effect from the drugs,” says Kularb.
AIDS Access Foundation filed 6 patent oppositions in 2015-2018 (all of the patents are still pending), and TNP+ and others had been advocating for sofosbuvir (SOF), a new DAAs that cured most people in 12 weeks when it was used with another DAA. In 2018, SOF and the combination of SOF ledipasvir (LDV) was introduced in Thailand and included in the universal health coverage scheme’s benefit package, after long efforts and policy dialogues with the Ministry of Public Health, urging them to issue a compulsory license and filing patent oppositions. The game changed when the Malaysian government announced a compulsory license on SOF. In response, Gilead, the patent holder for SOF, decided to extend their license so that generic versions of SOF could be imported to Thailand, Belarus and Ukraine.
Thailand imported two generic regimens from India, to which led to significant price reduction (from Gilead’s price of $1,100 per bottle for SOF to $110) from generic manufacturers. In 2021, Thailand revised and simplified its standard of care for HCV to standard treatment of the pan-genotypic regimen of SOF and velpatasvir (VEL) supplied by generics manufacturers. The arrival of generic HCV treatment created competition in the market, leading to potential savings that could mount up to US$ 224 million, if Thailand implemented the WHO treat-all recommendations.
Thailand’s HCV treatment guidelines changed again in 2022, which significantly improved eligibility for and access to HCV treatment and expanded the pool of providers from specialists to trained general practitioners. Benefits in all healthcare systems now cover HCV testing and treatment.
“Before that, only GI doctors or doctors with more than 5 years of experience in HCV treatment could prescribe the medicines. Thailand has limited number of the qualified doctors. The other unnecessary criteria or lab tests, such as liver function, viral load, and genotyping, were either removed or adjusted,” clarified Kularb.
She added that her local hospital now has a quarterly hepatitis clinic meeting for
doctors, nurses, pharmacists, lab scientists, and the CCC Center lead; during these meetings they share information about the current HCV situation at the hospital and evaluate the readiness of each department.
“We explained the issues and the difficulties myself and my friends faced in needing to travel to hospitals in other provinces, yet not being able to get treatment until we meet all the criteria, but nobody wants to wait until it reaches that stage,” Kularb said.
The hospital used this information to develop plans for an HCV clinic, which opened in January 2023, initially for one day a month; it will provide treatment to 20 HIV/HCV co-infected people. By March, five people had been treated. Kularb started her HCV treatment on February 23.
“The doctor told me to go get medicine (pills) every month. I chose to take it before bed every night for 3 months. It seems to have less side effects compared to injections my friends have taken before. But if someone gets cirrhosis or liver cancer, the community hospital will transfer you to a hospital with a specialized doctor for continuous treatment,” she explained.
Now, Kularb wants access to HCV prevention and testing for the general public (who aren’t considered “high-risk”), to build awareness, and so that more people with HCV can get treatment – now at a community hospital.
