However, in 2015 she learned that she had been cured of the virus, following a 12-week treatment regimen with the anti-viral drug sofosbuvir. Recounting her experience living with hepatitis C (hep C), Anderson said it felt like she had received a death sentence.^2,3

Anderson became a spokesperson for the Canadian Liver Foundation shortly after her diagnosis to help dispel some of the stigma and misconceptions associated with the disease.⁴

What is it like living with hep C?

Following her diagnosis with hep C, Dr Sarah Skyrme of the Faculty of Biology, Medicine and Health at the University of Manchester, shared her experiences in an article published in the journal Frontiers in Sociology:⁵

“I had never experienced ill health that did not improve over time. Whilst there had been a gradual increase in fatigue, joint pain, and dizziness over the previous two years, I had only mentioned this to one doctor, who suggested it was depression and stress.

“Therefore, I had no frame of reference for what was happening when the symptoms intensified in the space of a few weeks, which then turned into months. I felt cut off from ordinary existence, using public transport became a dilemma, the crowds and uncertainty about getting a seat were a barrier to travel.

“Any type of daily activity needed an exit plan in case fatigue overwhelmed me, and my preference was to stay home if possible. My lifeworld shrank to fit this apparent ‘new normal’, and I felt that I had aged 20 years in a very short time. The diagnosis of hep C was overwhelming, and because it is a stigmatised condition, I was cautious who I told.

“The combined effects of feeling ill and no longer able to cope with the physicality of daily life, and my caution in discussing this with others led to feelings of isolation and of being alone with my dilemma. Increasingly, I felt marginalised and on the edges of a social world I had previously been a part of.”

The voices of patients living with hep C

In a quantitative study, by Kracht et al, participants described their initial reactions to their hep C diagnosis as ‘shock’, ‘fear’ and thinking ‘that this can’t be right’. They experienced stigmatisation and were confronted with feelings of guilt for having been at risk for the infection. Some opted to keep their diagnosis secrect.⁶

According to Saine et al, 95.5% of patients with hep C experience some degree of disease-related stigma. Furthermore, patients living hep C sometimes tend to self-stigmatise.⁷

Interestingly, Saine et al found that the greater the knowledge about the transmission and natural history of hep C, the greater self-stigmatisation among patients.⁷

The authors hypothesise that this may be due to the fact that the more knowledge patients have about the disease, the more aware they are of the stereotyping and social stigmas associated with hep C infection, which exacerbate their feelings of shame.⁷

Participants in a study by Kracht et al report that they felt like they have ‘done this’ (contracting hep C) to themselves, opting to ignore their condition and not seeking medical care.  Some even went as far as isolating themselves from family members because of fears of co-infecting their children, roommates, or sexual partners.⁶

A systematic review by Dowsett et al looked at patient perceptions about living with hep C. Their review revealed five overarching themes or challenges patients living with hep C experience:⁸

1. Disruption to daily life

Studies report that patients experience considerable impaired quality of life, and chronic physical as well as psychological symptoms related to the disease. The most common symptoms include fatigue, weakness, nausea, pain, swelling, headaches, and sweating. In addition, some patients experience psychological symptoms such as depression, anxiety or panic attacks, and irritability. Other symptoms include poor memory and the inability to concentrate.

2. Communication

Patients report that they were treated insensitively by healthcare professionals when given the diagnosis, that adequate time was not spent with them, confusing medical terms were used, and some were

refused treatment. Furthermore, patients felt they were given negligible information about hep C after diagnosis or were poorly informed, they were told different information during each visit, and were not given practical advice on how to deal with their disease.

3. Impact of diagnosis

After receiving a positive hep C diagnosis, some patients report a range of emotions, including distress (being overwhelmed, frightened, and hopeless), shame, disgust, shock, surprise, denial, and doubt, while others report feeling relieved. Those who were not shocked or surprised at the time of diagnosis were often current intravenous drug users who viewed contracting hep C as inevitable. Patients also report that their diagnosis impacted their relationships either negatively (eg divorce, breaking-up) or positively (eg family support).

4. Preferences for care

Many patients report having a negative relationship (eg healthcare providers focusing on the disease rather than the person, not feeling supported,  and being treated like a ‘leper’) with their healthcare providers.  Some patients also report feeling unworthy of medical care.

5. Stigma

As mentioned, most patients living with hep C experience societal or self-stigmatisation. In terms of societal stigmatisation, causes include the misconception that hep C is caused by either intravenous drug use or risky behaviours, and a lack of knowledge about transmission. Patients living with hep C report that misinformation made those around them afraid of touching them, and afraid of them using regular utensils and plates (eg those infected would be offered plastic utensils and paper plates). Patient responses to stigma include hurt feelings, shame, embarrassment, low self-worth, fear, anger, depression, isolation, feeling dirty, and rejected.

Dowsett et al conclude that greater education, compassion, and patient-centred healthcare could improve the experience of people living with hep C.^8p9

According to Dr Skyrme, there is limited public knowledge about hep C or awareness of the needs of patients. To create greater awareness, World Hepatitis Day is held annually on 28 July. The date was selected to coincide with the birth of Nobel-prize winning scientist Dr Baruch Blumberg, who discovered the hep B virus and developed a diagnostic test and vaccine for the virus.^5,9

Who is at risk of hep C infections?

Hep C is transmitted most often through exposure to infected blood. Vertical transmission may occur, but the risk is low. The risk of getting hep C through sex is also low but is possible.  Without using condoms, the following situations increase the risk of getting hep C from sex: If infected with HIV or another sexually transmitted disease, multiple sexual partners, rough sex that could cause tears or fissures and receiving anal intercourse. The most common route of transmission, before blood donor testing was instituted, was through blood transfusions.¹⁰

Although hep C infection is associated with intravenous drug use, intranasal cocaine use, tattoos, piercings, incarceration, patients who undergo haemodialysis, and healthcare workers (eg needle pricks) are also at risk of hep C infection.¹⁰

Other healthcare-related factors that contributed to hep C transmission include therapeutic injections with re-used syringes or unsterilised needles and unsafe injection practices during vaccination campaigns.¹¹ 

Direct-acting antivirals a game-changer in hep C treatment

Above we looked at the psychosocial impact of hep C on patients. The physiological impact on patients is even more devastating and can result in cirrhosis, hepatocellular carcinoma, liver failure, and liver-related death.¹⁰

Hep C can be acute (symptoms can last up to six months) or chronic (long-lasting infection). About 75% to 85% of patients living with acute hep C will develop chronic hep C.¹³

Of every 100 patients infected with hep C, between five to 25 will develop cirrhosis within 10 to 20 years. Patients who develop cirrhosis have a 1%-4% annual risk of developing hepatocellular carcinoma and a 3%-6% annual risk of hepatic decompensation. For the latter patient populations, the risk of death in the following year is 15%-20%.¹²

According to Lam et al, the management of chronic hep C has been revolutionised by the development of direct-acting antiviral agents (DAAs)^10p1b, resulting in cure rates of between 90%–100%.¹⁰

Until the launch of DAAs, the standard treatment included interferon, which was usually combined with the oral drug ribavirin. Interferon requires regular injections and takes between six and 12 months to potentially eradicate the virus.⁵

The treatment is associated with a number of side effects including flu-like symptoms, nausea, digestive disturbance, headaches, anxiety, fatigue, and anaemia, and has a sustained virologic response (SVR) rate of 30%–40%.⁵

The first DAAs for the treatment of chronic hep C were approved in 2013. These agents are taken in tablet form, have fewer side effects, and can be effective in as little as six to 12 weeks.⁵

Earlier this year, Gilead Sciences, a biopharmaceutical company,  announced the launch of fixed-dose co-formulation sofosbuvir and velpatasvir in South Africa.¹⁴

Sofosbuvir is a pan-genotypic antiviral that acts by inhibiting hepatitis C virus (HCV) RNA synthesis through inhibition of non-structural protein 5B (NS5B) polymerase. It possesses fewer adverse outcomes and has a low tendency towards resistance. Velpatasvir is a non-structural protein 5A (NS5A) HCV protein inhibitor. It also acts against all HCV genotypes.¹⁵

The combination of sofosbuvir and velpatasvir for the treatment of chronic hep C has shown efficacy of 99% to 100% (SVR at 12 weeks [SVR12]) in non-cirrhotic treatment-naïve patients. A recent study by Shah et al showed that the SVR12 in patients with cirrhosis was 89.7%.¹⁵

In South Africa, co-formulation sofosbuvir-velpatasvir is indicated for the treatment of chronic hep C infection irrespective of genotype in treatment naïve or treatment-experienced patients aged 12-years and older and weighing at least 30kg:¹⁶

• Without cirrhosis, or with compensated cirrhosis
• With decompensated cirrhosis in combination with ribavirin.

Conclusion

She was fortunate, concluded Dr Skyrme. She was able to purchase the antivirals and to move on with her life. The availability of more affordable and effective antivirals now available has made it possible for patients living with hep C to regain control over the lives.⁵

REFERENCES

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