Story from Ayu Oktariani, Bandung, Indonesia

My Name is Ayu Oktariani, I’m from Bandung, Indonesia, I am 29 years old female. I’m co-infection HIV HCV patient, since 2009. My HIV condition is very well managed since the time infected, the ARV therapy help me through the difficult time. But my HCV infection makes it harder, because I don’t take any treatment since 2009, because of the high prices of the medicine. At that time, my doctor only suggested the interferon injection, but it is so expensive. Not just the medication, even the test is still so expensive. I never do my HVC RNA test, Genotype test because it’s too expensive. Until 2015 I have a chance to do the test and finally know that my Hepatitis C Viral load is so high, and my condition related to HIV lower, I start getting sick again and my CD4 lower.

At 2015, I heard from my friend there is a new hepatitis C medicine that we could access, without injecting and cheaper. But it still not provided in Indonesia, so we should buy in India through our friends. It also not easy to get the medication, because I need to find the doctor in Bandung, who would easily give us the drug prescription for 6 month treatment. Luckily I find the doctor in Jakarta, so I need to go outside town to meet the doctor and have a consultation about the treatment plan.

In July 2015, I start the medication, its combination between Ribavirin and Sofosbuvir. The first month the process is just so smooth, I don’t have any problem, or even feel any side effects from the meds. But my family, feel that I mentally change. More quite, sensitive, easy to angry and very emotional. They try to told me several time, but I denied and tell that I am okay, since I felt that changes in the 5th week. I feel like I have 2 face, one is myself, and the other one is the person who very complicated and fragile. I am getting crazy to respond anything, I suddenly crying with no reason. So I decide to talk with my peer friends who also have a hepatitis c treatment like me. It helps, but I decide to survive the anxiety effects till the end of treatment without anti-depressant.

At the second month, I check the HCV RNA, and the result is so amazing me. From 4.83 x 10^6 decrease down to 8.68 x 10^2, and week 24 the result is undetectable. At the end of this month, I will be doing test for my SVR 12, and cannot wait for the result. Since the beginning of the treatment until now, me and a couple of friends in Indonesia AIDS Coalition are trying to build the awareness to the community, about the Hepatitis C issue and the Medication. I write my story in my personal blog and also make a petition in change.org Indonesia, both of this getting viral, and make people come to us for asking how they also can get treatment and information.

For me, this treatment is not only about how to heal the hepatitis c, but it such a good learning personally to build awareness among my family and society. Also how Indonesian government specially need to improve their quality of treatment and prevention, not only in HIV but in Hepatitis C an another disease.

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