Hepatitis C in South Africa: A primer for civil society on the need for action
By Maria Stacey, Tim Lane, Anton Ofield-Kerr and Carlos Orte
OPINION: When the topic of Hepatitis comes up in conversation amongst people involved in the HIV response, people often confess they know very little about the illness. And yet, globally, viral hepatitis currently causes more deaths than HIV; and while the number of HIV-related deaths are falling, those associated with hepatitis are increasing yearly. Our National Strategic Plan for HIV, TB and STIs 2017-2022 recommends integrating viral hepatitis vaccination, screening and treatment into our comprehensive HIV response. Yet, there are significant barriers to making this a reality, including lack of awareness amongst health professionals, lack of public education, a lack of registration of life-saving medicines, and stigma and discrimination towards people at high risk for viral hepatitis, including people who inject drugs (PWID).
Viral Hepatitis basics
The most common forms of viral hepatitis are Hepatitis B (HBV) and Hepatitis C (HCV). There are an estimated four million people with Hepatitis B and 400,000 with Hepatitis C in South Africa. Hepatitis C, in particular, affects key populations, especially people who inject drugs (PWID). Like HIV, Hepatitis C is a blood-borne virus, but is able to survive and remain infectious outside of the body longer than the HIV-virus. Although it can be sexually transmitted, the most efficient, and common, mode of transmission, is through re-used or shared needles and razor blades, or direct contact with infected blood.
Prior to the 1990s, most HCV transmission occurred iatrogencially, that is, unintentional transmission through medical procedures, including medical injections using unsterile needles, and blood transfusions before the blood supply was screened for HCV. Most of the up to 400,000 South Africans with chronic HCV infection acquired HCV through these means. Most of these are likely unaware of their HCV infection unless it has caused liver disease (see “Symptoms of Hepatitis C” below). Thankfully, iatrogenic infection is now extremely uncommon and preventable through many of the same precautions through which health care professionals prevent HIV transmission in medical settings, including the use of gloves, sterile needles, and safe disposal of medical waste products.
Nevertheless, South Africa is currently facing a significant viral hepatitis epidemic challenge. Recent epidemiological studies reveal rapidly growing hepatitis outbreaks among South African PWID populations. HCV prevalence estimates among PWID range between 45% and 94%; as many as half of all PWID may be co-infected with HIV and HCV; and around 5% of PWID have chronic HBV infection. PWID in the national capital of Tshwane appear to carry the highest burden of viral hepatitis: two separate, independent studies by the national NGO TB HIV Care and the University of California San Francisco in 2018 found three-quarters or more of PWID with an untreated viral hepatitis infection.
The structural and human rights challenges which make PWID a key population for HIV apply to Hepatitis C as well: high levels of stigma, discrimination, violence, criminalization of drug using behaviour and police harassment, low access to health services, high rates of homelessness, and high rates of incarceration.
Symptoms of Hepatitis C
Like HIV, people who are infected with Hepatitis C may be unaware of the infection, as they can be symptom-free for years. Infection has an acute phase – the first six months after becoming infected – during which as many as 20% of infected people may naturally clear the virus. For the remaining 80%, infection will become chronic.
Some people with chronic Hepatitis C will progress to develop fibrosis and cirrhosis (scarring) of the liver, liver cancer or end stage liver disease, while others experience very little liver damage, even after many years. In cases where there is an absence of symptoms many people do not discover that they have HCV until some time after they have been infected. Heavy alcohol use and co-infections, including HIV and HBV, can exacerbate and accelerate progression of chronic HCV infection to cirrhosis or liver cancer.
Another reason that Hepatitis C goes undiagnosed for many years is that its symptoms are often non-specific and are frequently attributed to other illnesses. These include depression, fatigue, difficulty concentrating, skin problems, insomnia, pain and digestive disorders. In fact, often hepatitis C infection is picked up by doctors when they do a liver function test while monitoring for another medical condition; hepatitis C infection is then confirmed with HCV antibody and viral RNA testing. For these reasons Hepatitis C is often referred to as the ‘Silent Epidemic’.
New drugs bring eradication within our reach
In the past, the only HCV treatment option available was weekly injections of interferon, combined with daily oral ribavirin, for up to one year. Interferon-ribavirin treatment was associated with high rates of unpleasant chemotherapy-like side effects, including anaemia, flu-like symptoms including severe fatigue after interferon injections, and psychological side effects including irritability, severe depression, and suicidal thoughts. Even for those who could endure the full course of treatment, cure rates were only around 50%.
However, now, finally, new solutions exist to treat Hepatitis C. New direct acting antiviral drugs (DAAs) provide a safer, more effective, orally administered cure over a shorter time period (either an 8 or a 12-week course) that is well-tolerated with none of the severe side effects associated with interferon-ribavirin treatment. South Africa has recently approved National Hepatitis Guidelines, in line with the latest WHO recommendations for DAA treatment. A National Hepatitis Action Plan (NHAP) is being finalised, for launch in mid-2019. As many as 96% of chronic HCV infections in South Africa can be cured by DAA therapies. It may even be possible to eradicate HCV in South Africa by 2030.
Yet, South Africa faces significant barriers to scaling up Hepatitis C screening and treatment for all. These include lack of awareness amongst both healthcare providers and the general population who may have been exposed through medical procedures before the 1990’s, as well as high-risk groups such as PWID; the current lack of availability of DAAs except through a special Section 21 named patient procedure; failure by the South African Health Products Regulatory Authority (SAHPRA) to register any of the new medications; lack of treatment activist engagement in the silent epidemic; overwhelmed public health infrastructure; and a lack of ambition to plan and implement an eradication strategy based on mass case-finding, screening, treatment and cure.
What are the barriers and what needs to happen?
For South Africa’s NHAP strategy to be effective, a few things need to happen:
- Increased awareness among healthcare providers. At the moment, awareness of Hepatitis C amongst health professionals is very low, and expertise is highly centralised within tertiary hospitals. There is a dire need to increase expertise amongst health professionals at primary and secondary level, so that they become alert to the symptoms of Hepatitis C, and are competent in the diagnosis and treatment of the condition.
- Multi-sectoral cooperation to reach key populations. Partnerships between public health facilities and NGOs, especially those working with key populations, will create synergies. NGOs can engage with key population communities, raise awareness, conduct social mobilisation, refer for treatment, and provide sensitisation training for health facility staff.
- Registration of DAAs. Direct acting antiviral drugs have been awaiting registration by the SAHPRA for up to five years. These drugs will address a large unmet public health need and must be processed and approved by SAHPRA urgently.
- Human-rights affirming HCV prevention, care, and treatment for PWID. Punitive law and drug enforcement policies and programmes targeting PWID drive people away from health services, contribute to the growing HCV epidemic outbreak, and ultimately, cost lives. Programmes and policies to assist PWID should all be guided by WHO-recommended harm reduction best practices, including access to sterile needles, and opioid substitution therapies (OST) to treat heroin addiction.
- Needle and Syringe Programmes (NSP). PWID often do not have access to clean and sterile needles despite peer-based NSP outreach to PWID. For example, in eThekwini, the municipality shut down a civil society NSP. PWID need a continuous supply of adequate quantities of needles and syringes, otherwise even if people are treated for HCV, they can become re-infected.
- Cost-effective Opioid Substitution Therapy (OST) access and scale up. OST is currently out of reach for most PWID due to its high retail cost. For example, the OST drug Methadone is currently approximately 30-40 times more expensive in South Africa than in other countries. Public health emergency strategies must be invoked to decrease the cost, including encouraging introducing competition into the market through new applications to SAHPRA.
Civil society advocacy has the power to unlock the hepatitis response in South Africa and save hundreds of thousands of lives, as it did with HIV. It is time for civil society to educate ourselves, talk openly about hepatitis, advocate for integration of hepatitis screening into primary health care and sexual and reproductive health services, and to reduce barriers to care and treatment, especially among PWID and other key populations. It is also time for government to lead the hepatitis response, with an ambitious strategy aimed to eradicate hepatitis through mass screening, treatment and cure.
- The authors are Directors of Equal International, a niche consultancy group focused on supporting multi sectoral partnerships to ensure marginalised groups are not ‘left behind’, and would like to thank the PITCH programme (a strategic partnership a strategic partnership between Aidsfonds, Frontline AIDS and the Dutch Ministry of Foreign Affairs) for supporting multi-stakeholder engagement around Hepatitis C and PWID in South Africa.