Malaysian Hepatitis C Patients and Activists Speak Out

Dr SS Tan and hepatitis C patients Peace James, Rosalyn, and Rashid Bin Hashim speak out about the difficulty to access affordable direct-acting antivirals.

Peace JamesPeace James, 26, is a young musician, who dreams of travelling the world. He was born with thalassemia and needs regular blood transfusions. He was infected with hepatitis C through a blood transfusion when he was a kid. When treated with interferon his hemoglobin dropped dramatically and he came close to death.

“DAAs are the only hope for him,” says Dr SS Tan, a Hepatologist at Hospital Selayang, Batu Caves, Selangor, Malaysia.

To protect his confidentiality, Peace’s face is not shown

Dr SS TanDr SS Tan, Head of Hepatology Services, Ministry of Health, Malaysia, and Head of the Department of Hepatology, Hospital Selayang, Batu Caves, Selangor, Malaysia.

“Sofosbuvir has been registered in Malaysia since September 2015 but it is beyond the reach of my patients. It is not available in government hospitals and it is unlikely to be there with the current price tag. As a clinician, it breaks my heart when I am unable to offer my patients such good treatment just because of its exorbitant cost. You should see the shock on my patients’ faces when I tell them the price of DAAs.”

RosalynRosalyn, 58, is a community leader and former drug user who was diagnosed with hepatitis C over 25 years ago in Kedah, in Northwestern Malaysia. When severe symptoms of the disease began recently, she was given interferon treatment but had to stop when the side effects turned her life into “hell.”

“My doctor at the University Malaya Specialist Centre (UMMC) hospital told me there is a magic drug sofosbuvir that treats hepatitis C without any side effects. I don’t know if I will get that treatment because there is a long waiting list in the hospital. You need to fulfil a lot of criteria like viral load count, condition of the liver, age, etc for getting that drug. In short, only the most needy will get it,” Rosalyn says.

UMMC is one of the hospitals where DNDi’s clinical studies will take place in Malaysia.

“I love my community and I don’t want people to go through the kind of stigma and discrimination I went through,” she says.

Rashid Bin HashimRashid Bin Hashim, a former drug user, an active member of Hepatitis Support Group, Hospital Selayang, Batu Caves, Selangor, Malaysia.

“The majority of hepatitis C patients in Malaysia are from the drug user community and it is difficult for them to have access to hepatitis C treatment, mainly because they don’t know their status. Secondly, they don’t go to hospitals to avoid facing discrimination and stigma attached with drug users.”

Photo credit: Mazlim Husin/DNDi