Sana’s Story

Name: Sana

Gender: Female

Age: 71

Who is Sana?

Sana lives with her daughter and grandchild in Melbourne, Australia. She describes her ethnic background as ‘Indian’: like both her parents, Sana was born in India. Sana is retired and relies on her daughter for income. She says that she was ‘very happy’ to be cured of hepatitis C.

Brief Outline:

Sana was first diagnosed with a ‘blood infection’ in India in about 2008, before being diagnosed with hepatitis C in Australia in 2019. She had heard mixed information about the new treatment from friends and family overseas, and was concerned about her health and whether the virus was curable. With her daughter’s support, she was cured of hepatitis C with the new treatment in 2019. For her, completing treatment was ‘very easy’, and had the added benefit of positive effects on her relationship with her daughter, who accompanied her to all appointments and supported her during treatment.

(Note: the interview used to develop this narrative was conducted with the assistance of a translator)

Sana's Story:

Before being diagnosed with hepatitis C in Australia in 2019, Sana had had blood tests in India in about 2008 that suggested she had a ‘blood infection’. At the time, however, she was told to not ‘worry about it’. As she explains, after she moved to Australia to live with her daughter, she started noticing that she was experiencing ‘tiredness’, that ‘food [was] not getting digested properly’, and that ‘the colour of her skin was getting […] darker’. After reporting these symptoms to her local GP, he recommended she get a blood test, and she was diagnosed with hepatitis C. She is unclear how she acquired it, but she thinks it may have been many years earlier, when she needed blood transfusions after a serious arm injury.

Thinking about how she felt about her diagnosis, Sana says she was ‘worried because she [had] heard from other people […that] it’s very serious’. She was given confusing information about the treatment from friends in India and was ‘frightened’ because she had heard it couldn’t be cured at her age and that she might die. However, after speaking with her son and some other friends, she became aware that the new treatment was ‘very easy’ and that she had nothing to worry about.

Sana’s daughter accompanied her to all her medical appointments, looked online for information about the virus and available treatments, and helped translate the health information and advice she received. According to Sana, their ‘relationship [got…] stronger’, because she became increasingly aware of how trustworthy her daughter was. As she puts it, it was ‘good to have […] someone who can understand you and go through the journey with you’. She also reflects that treatment could have been ‘very hard’ if she’d ‘had to deal [with it] by herself’.

Sana started treatment immediately after being diagnosed, and says she was ‘very happy with it and finished within three months’. While she says she experienced some mild symptoms (‘itchiness’), she found treatment ‘very easy’ overall. Her daughter put reminders on her phone to take the medication and also reminded her during the day. Sana recounts that ‘every person during the treatment was fantastic’ and made sure she understood the health information being given. Sana explains that, ‘They [the medical staff] speak nicely,’ and that ‘when they know that I can’t understand English, they speak, like, little bit slowly and just [emphasise] the targeted words and, with a smile, facial expressions, and they give [me] full respect.’

Sana’s was ‘happy’ to find out that the treatment had cured her of hepatitis C. Now, she says, she can focus on managing other health issues such as her diabetes.

Sana (F, 71, experience with new treatment [DAAs]) explains that she may have acquired hepatitis C while still living in India, during a medical procedure for an arm injury.

[I had] to do some checks and everything, medical things, for the visa purposes […and] went to the local doctor there to just get all the tests done […] They said, ‘You’ve got a little infection in your blood’, but then they didn’t [explain] what sort of infection. They said, ‘Don’t worry about it, it’s okay’, because, you know, in India, sometimes they are like that. Yeah, doctor to doctor, it depends. Yeah. Some [things] they take serious[ly], some they don’t take serious[ly] […] One time [I had] like a little accident where [my] arm just got squished fully […] luck[il]y it wasn’t the bone. So, it’s just like the muscles and everything […and I] was hospitalised for nearly a month, I think. During that process, I had a blood transfusion and so many injections and everything, and we’re thinking [my family and I], like, maybe [I acquired hep C] from one of those injections or blood transfusions.

Thinking further than her immediate family, Sana (F, 71, experience with new treatment [DAAs]) says that she found speaking to other relatives reassuring.

I was worried with my age, because the information [I got from] different channels […meant] I felt like [hepatitis C’s] a big thing. I don’t know what’s going to happen with me – and also, you know, other myths, and all the information I was getting [was confusing]. Some people say you just die with it, you know, [or] it depends on which stage you are [at… or] it can’t be curable, and all that. So, it gives, like, a lot of mixed feelings […] I kept thinking, ‘What’s going to happen, and is it going to really get treated as [the doctor is] saying?’ Yeah. I told all the close relatives […overseas]; it was good to speak to the relatives. They said, ‘Yeah, you will be all right’ and [gave me] assurance. ‘It’s not like a disease that doesn’t have treatment. So, you will get the treatment and it should be all good’.

Sana (F, 71, experience with new treatment [DAAs]) says that the health professionals managing her treatment were ‘fantastic’ and very respectful.

Every person during the treatment was fantastic […] Even the nurses […] the ones that work under a specialist, they are so helpful. […] They were very helpful and […] they speak nicely. When they know that I can’t understand English, they speak, like, [a] little bit slowly and just on the targeted words and with a smile, facial expressions, and they give [me…] full respect.

Hepatitis C Quick Reference

While the new direct-acting antiviral (DAA) treatment for hepatitis C is generally straight forward, the personal experiences of people affected by it can be more complex. Below are a few key points about testing, treatment and health after cure.

Acquiring hepatitis C

Hepatitis C is a ‘blood-borne virus’. This means it is acquired through blood-to-blood contact. This can happen in several different ways. In some countries such as Australia, hepatitis C is commonly acquired through sharing injecting equipment. In other countries, hepatitis C is more commonly acquired through medical procedures or forms of skin penetration such as tattooing, body piercing or acupuncture, when unsterilised equipment has been used.

Hepatitis C testing

Two tests are used to diagnose hepatitis C. The first is an ‘antibody test’. This is used to identify exposure to hepatitis C. A positive antibody test shows that exposure has occurred, but not whether hepatitis C is still in the body. The presence of hepatitis C is determined with a PCR test. A PCR test looks for hepatitis C in the bloodstream by detecting the genetic material specific to the virus. A negative PCR test means the body has ‘cleared’ hepatitis C without treatment. A positive PCR test means hepatitis C is still present and medical advice is needed to discuss the possibility of future tests and treatment.

Treatment

The current form of hepatitis C treatment is called direct-acting antiviral (DAA) treatment. It is taken in tablet form, with around 95% of people cured on completion. This treatment replaced the old interferon-based treatment. The new treatment was a significant improvement for people with hepatitis C because it is relatively short (cure usually results within eight to 12 weeks) and has minimal side effects. The old treatment by comparison was much longer, less likely to result in cure and had many debilitating side effects. Because the old treatment was unreliable and debilitating, many people with hepatitis C chose not to have it, and instead waited for the development of better treatment. Many of these people have now been cured using the new treatment.

After treatment

After hepatitis C cure it is still possible to test positive for hepatitis C antibodies (see the two tests described above). This is because the antibody test only determines whether hepatitis C has ever been in the body. Only a PCR test can determine whether hepatitis C is still active in the body. Importantly, it is possible to acquire hepatitis again after cure. There are no limits to how many times testing or treatment for hepatitis C can be accessed in Australia. This means that treatment is always an option even for people who have had it in the past.