Providing equitable, appropriate care for those with hepatitis C

April 1, 2021

People living with hepatitis C are still subject to stigma and discrimination. But new treatments and alternative ways of providing care can help ensure they get the care they need.

Viral hepatitis C (HCV) affects an estimated 80 million people worldwide.1 Diagnosing and engaging in meaningful care with people living with viral hepatitis is an urgent priority, both nationally and internationally. Nurses are well placed to provide this care.

Globally, 1.1 per cent of the population are chronically infected2 with a viral infection that can lead to significant negative health outcomes, including death. The World Health Organization (WHO) states that, in 2015, 1.34 million people died from consequences of viral hepatitis infection.2 While this statistic relates to hepatitis B and C combined, it shows the seriousness and worldwide impact of these viral infections. In 2017, the WHO released its Global Hepatitis Report that called for the elimination of viral hepatitis as a public health threat by 2030.3 Unlike hepatitis B, HCV does not have a preventative vaccine. Elimination targets are focused on harm reduction to prevent infection, and treatment and cure of existing infections.

Arduous treatment

Historically, HCV treatments were arduous, with low efficacy and ill-suited for many, resulting in poor uptake.4 The advent of highly effective, well tolerated, oral short-course treatment regimes has paved the way for countries to realistically look at meeting the WHO’s public health elimination goals. However, the availability of effective treatment is not the only consideration in successfully meeting these goals. Inequity is a major factor in HCV and the social determinants of health must be considered, alongside the pathophysiology, to succeed in achieving these targets.

In February 2019, PHARMAC fully funded a highly efficacious, direct-acting antiviral medication (Maviret) here in New Zealand.5 The majority of people living with HCV require an eight-week course of three tablets once a day, with expected cure rates of around 98 per cent.6 This has the potential to revolutionise the care of people living with HCV.

The estimated prevalence of HCV in the New Zealand population is around 1.2 per cent of the population,7 – approximately 50,000 people. Around half of these people will be unaware they are living with HCV.8 To find the estimated 25,000 cases of undiagnosed HCV,8 a targeted testing approach is recommended. This means identifying people who have a current, or past risk of exposure to any of the known transmission routes of the virus.

HCV is a blood-borne virus and transmission in New Zealand is predominantly by injecting drug use.1 However, other transmission routes must not be forgotten. Receipt of blood products before 1992; vertical transmission (mother-to-child); sexual transmission (low transmission); migration from a high prevalence country (or recipient of health care in high prevalence country); incarceration; and non-professional tattooing/piercing are all considered risk factors warranting HCV testing.8

Acute hepatitis C infection is often asymptomatic. Eighty per cent of people will go on to develop a chronic infection, with around 20 per cent spontaneously clearing the infection, leaving non-protective antibodies.9 Those chronically infected with HCV often remain asymptomatic for many years; however for around one in five, the ongoing inflammatory process within the hepatocytes causes significant scarring and liver cirrhosis. Decompensated cirrhosis, liver cancer and extra-hepatic manifestations are the most serious outcomes for some of those burdened by HCV.10 While the health implications of this virus can be very significant, the ongoing health-care requirements of those who are sickest is also significant and continues to grow.11 The upward trend in serious chronic liver disease, liver cancer and death (related to HCV) is predicted to continue for some time, with hepatocellular carcinoma the most rapidly increasing cause of cancer mortality in New Zealand.12

Targeted testing fails to take into account the stigma and discrimination associated with the declaration of risk and then possible diagnosis of a blood-borne virus.

Finding the missing thousands of people living with an undiagnosed hepatitis C infection must be a health priority, if the dramatic increase in liver-related deaths in New Zealand is to be reduced. Targeted testing aims to prioritise and test appropriate populations,10 but is not without problems. To test the targeted person, self-identification of risk is necessary. Targeted testing fails to take into account the stigma and discrimination associated with the declaration of transmission risk activity and then possible diagnosis of a blood-borne virus.13 Sadly, stigma and discrimination in health-care settings is well documented14 and significantly affects the power dynamic between patient and care provider. Initial diagnosis is not the only barrier; linking people into care and keeping them in care once a diagnosis is made, is vital to enable treatment. Prevention or optimised care of chronic liver disease sequelae and prevention of ongoing transmission are also essential.

To reach the WHO’s elimination goals (mortality reduced by 65 per cent and new chronic infections reduced by 90 per cent, compared to 2015 rates3) by 2030, there must be better engagement with those most at risk of viral hepatitis. For HCV, this means breaking down barriers for vulnerable and often highly marginalised groups of patients. People who inject drugs (PWID) bear the largest burden of this chronic disease and are often least engaged with health services.15 Addiction is noted as both cause and effect of widening inequalities in health.16 Linking into care and treating this group not only has individual health benefits, but also significant public and population health benefits. Reduction of the infective pool is an important tool in public health17 with treatment becoming a tool in preventing re-infection.13 A 2017 study at an inner city Sydney health clinic showed efficacy rates for direct acting anti-viral treatment in a highly marginalised, predominantly PWID population.18 It showed that treatment was effective and this has been the basis for extending hepatitis C treatment programmes away from traditional hospital outpatient settings.

People living with housing instability are vulnerable and have an increased HCV risk for a variety of complex inter-related health determinants, such as mental ill health, alcohol, substance and drug misuse, and more frequent involvement with the prison and justice system.19

Hepatitis C care in the Bay of Plenty has historically been a secondary-care model, based in a hospital outpatient setting, with the service provided by a range of specialists, including a specialist nurse, infectious disease physician, gastroenterologist and hepatologist. The advent and funding of improved curative medicines, along with good working relationships between local opioid and hospital specialist services, helped improve existing services, but these were not enough. The one-size-fits-all approach to care did not provide optimum care for this population. In late 2018, enough interested parties – from primary care, secondary care, regional providers and peer-led needle and syringe programmes – were able to collaborate to create a nurse-led, GP-supported collaborative hepatitis C clinic based at the local needle exchange.

Once a month, with the support of the peer-led, harm-reduction service, a nurse-led, one-stop shop is held. A visiting nurse from secondary care provides services, including hepatitis C testing, liver assessment, treatment, education and support. This removes the need to attend a formal outpatient appointment at the hospital. By removing these barriers to care, we provide a more acceptable service. As a group of researchers has stated: “It is the broader social hierarchies that underpin exclusion from mainstream health care and the poorer health outcomes experienced by marginalised groups. Evidence is clear that when health services are not culturally appropriate, health consumers rarely use them.”20

Taking health care to the population in need utilises peer worker advocacy. Peers can help navigate health processes in ways acceptable to the clients, thus enabling collaboration and fostering trust.21 Models of care that promote community self-determination and utilise peer support help advocate for vulnerable groups.

The removal of barriers, such as appointment times, “did-not-attend” policies, initial referral, prescription costs, multiple encounters with different health staff and eligibility, increased access for this marginalised group. The service attempts to change the power differential between the service user and the care provider. This needed to be carefully balanced because of the trust and confidence issues for users of a service which provides needle and syringes within the harm reduction model. The involvement of peer workers, who promote the service, explain it and encourage others to use it, is pivotal to the success of any such clinic.4

An informal review of the service found it was acceptable to those directly involved in the initiative and, importantly, it was not a barrier to those accessing the primary service of needle and syringe exchange. The success of treating small numbers of people for HCV, who may otherwise have not accessed care, led to reaching out and trying to engage more with other priority groups for HCV care. In late 2019, the secondary care hospital hepatitis service, supported by peer workers, reached out to Tauranga Moana men’s night shelter, to see whether a hepatitis C service could benefit to the men using that service. The disproportionate infection rates in people who experience homelessness and between men and women made this population a priority.

A meta-analysis studying gender difference in the burden of blood-borne viral infections reveals an almost two to one ratio of male to female HCV burden, though in a very particular population.22 However, studies do show particular populations where this biological sex difference is disputed.23

Specialist nursing roles in hepatitis care in New Zealand lack consistency and range from registered nurses with expert knowledge to nurse practitioners (NP) working in the field. What is consistent is that this group is highly skilled, experienced and passionate, many with advanced practice capabilities and some with advanced nursing roles. Nurses are able to deliver effective care to those with, or at risk of, or living with the consequences of HCV. Substantial research into the NP workforce shows it is highly effective at delivering care to those with chronic health conditions, as well as being able to address the health inequities that indigenous, marginalised and vulnerable populations face.24

By applying a social justice lens to the work of engaging with populations most affected by HCV, we bring the best of a nursing paradigm to the proven biomedical one.25 Nurses are well placed to challenge health-care systems that further restrict, rather than enable, access to care.13 The advanced nursing characteristics of encompassing “not only the care delivery system in which the ANP [advanced nurse practitioner] practises, but also the community and society in which that care is provided”25 are pivotal to meeting the ongoing need of those most burdened by HCV.

But most hepatitis care is still delivered through biomedical care models that are not flexible or patient-centred enough for those with the complexities that often accompany HCV. To find and engage with people living with undiagnosed HCV, there have to be more collaborative, holistic systems of delivering care, many of which are best provided by advanced nursing roles.18

As nurses, we need to extend ourselves, seize opportunities and challenge the status quo to gain further development and recognition. Nurse prescribing within advanced nursing practice is now becoming a reality, and so may soon become more attractive to nurses caring for those with HCV. The Nursing Council is currently undertaking a comprehensive review of the approved list of medicines on the nurse prescribing list, with submissions for additions to this list including HCV antiviral treatment.26 The challenge will then be to encourage nurses to become clinical nurse specialists with prescribing rights, thus enabling the delivery of better care.

Hepatitis nurses with the necessary advanced knowledge and experience can and should lead the way in creating better systems more suited to those with HCV. There are many other discrete vulnerable groups where a similar alternative model of care would likely be as effective as for those with HCV. Reaching out to these vulnerable groups may be the first step towards authentic, effective, patient-centred specialised care, which reduces inequities and makes a difference in people’s lives. The challenge is to recognise, use and empower nurses to break down barriers and facilitate, first, the identification of these vulnerable groups, and, secondly, to link them into, and ensure their ongoing engagement with care. As nurses, we must all take our roles in advocating for our patients more seriously. If nurses caring for those with HCV both create new models of care delivery and advocate for their clients, elimination of hepatitis C infection in New Zealand by 2030 is a realistic aim.

Nicola Caine, RN, BSc, PGDip, is the hepatitis/HIV nurse at Tauranga Hospital, Bay of Plenty District Health Board.


This article has been reviewed by hepatitis C specialist nurse Jenny Bourke, who ran Christchurch’s hepatitis C community clinic for 14 years, and the Kai Tiaki Nursing New Zealand co-editors.

References

  1. Howell, J., Pedrana, A., Cowie, B., Doyle, J., Getahun, A., Ward, J., Gane, E., . . . & Hellard, M. (2019). Aiming for the elimination of viral hepatitis in Australia, and the Pacific Islands and Territories: Where are we now and barriers to meeting World Health Organization targets by 2030. Journal of Gastroenterology and Hepatology, 34, 40-48. doi:10.1111/jgh.14457
  2. World Health Organization. (2019). Consolidating strategic information guidelines for viral hepatitis: planning and tracking progress towards elimination. Geneva: WHO.
  3. World Health Organization. (2017). Global Hepatitis Report, 2017. Geneva: WHO.
  4. American Association for the Study of Liver Diseases (AASLD). (2018). Hepatitis C Guidance 2018 Update: AASLD-IDSA Recommendations for Testing, Managing, and Treating Hepatitis C Virus Infection. Clinical Infectious Diseases. 67, 1477-1492. doi:10.1093/cid/ciy585
  5. PHARMAC. (2018). Decision to fund a new hepatitis C treatment (Maviret) and to widen access to adalimumab (Humira) for psoriasis.
  6. Medsafe. (2019). New Zealand Datasheet – Maviret (PDF, 557 KB).
  7. Gane, E. J. (2015, Jul). Chronic hepatitis C. New Zealand Doctor, 35-38.
  8. Ministry of Health. (2020). Hepatitis C.
  9. Baden, R., Rockstroh, J. K.,& Buti, M. (2014). Natural History and Management of Hepatitis C: Does Sex Play a Role? Journal of Infectious Diseases, 209(S3), S81–S85. doi.org/10.1093/infdis/jiu057
  10. European Association for the Study of the Liver (EASL). (2017). EASL Recommendations on Treatment of Hepatitis C 2016. Journal of Hepatology, 66(1), 153-194. doi:10.1016/j.jhep.2016.09.001
  11. Hsiang, J. C., Bai, W. W., Raos, Z., Stableforth, W., Upton, A., Selvaratnam, S. Gane, E. J., & Gerred, S. J. (2015). Epidemiology, disease burden and outcomes of cirrhosis in a large secondary care hospital in South Auckland, New Zealand. Internal Medicine Journal, 45(2), 160-169. doi:10.1111/imj.12624
  12. Hassan, I., & Gane, E. (2019). Improving survival in patients with hepatocellular carcinoma related to chronic hepatitis C and B but not in those related to non-alcoholic steatohepatitis or alcoholic liver disease: a 20-year experience from a national programme. Internal Medicine Journal, 49(11), 1405-1411. doi:10.1111/imj.14304
  13. Harris, M., Albers, E., & Swan, T. (2015). The promise of treatment as prevention for hepatitis C: Meeting the needs of people who inject drugs? International Journal of Drug Policy, 26(10), 963-969. doi:10.1016/j.drugpo.2015.05.005
  14. Northrop, J. M. (2017). A dirty little secret: stigma, shame and hepatitis C in the health setting. Medical Humanities, 43(4), 218-224.
  15. Scott, N., Doyle, J. S., Wilson, D. P., Wade, A., Howell, J., Pedrana, A., Thompson, A., & Hellard, M. (2017). Reaching hepatitis C virus elimination targets requires health system interventions to enhance the care cascade. International Journal of Drug Policy, 47. 107-116. doi.org/10.1016/j.drugpo.2017.07.006
  16. Svanberg, J. (2018). Addiction, inequality and recovery. In A. Bonner (Ed), Social Determinants of Health (73-85). Policy Press.
  17. Laraque, F., & Varma, J. K. (2017). A Public Health Approach to Hepatitis C in an Urban Setting. American Journal of Public Health, 107(6) 922-926. doi:10.2105/AJPH.2017.303718
  18. Read, P., Lothian, R., Chronister, K., Gilliver, R., Keraley, J., Dore, G. J., & van Beek, I. (2017). Delivering direct acting antiviral therapy for hepatitis C to highly marginalised and current drug injecting populations in a targeted primary health care setting. International Journal of Drug Policy, 47, 209-215. doi.org/10.1016/j.drugpo.2017.05.032
  19. Hetherington, K,. & Hamlet, N. (2018). Health and homelessness. In A. Bonner (Ed), Social Determinants of Health (195-207). Policy Press.
  20. Mitchell, O., Malatzky, C., Bourke, L., & Farmer, F. (2018). A modified continuous Quality Improvement approach to improve culturally and socially inclusive care within rural health services. The Australian Journal of Rural Health, 26, 206-210. doi:10.1111/ajr.12409
  21. Crawford, S., & Bath, N. (2013). Peer support models for People With a History of Injecting Drug Use Undertaking Assessment and Treatment for Hepatitis C Virus Infection. Clinical Infectious Diseases, 57(S2), s75-s79.
  22. Ayano, G., Tulu, F., Mikiyas, S., Haile, K., Assefa, D., Habtamu, Y., Araya, G., & Yohannis, Z. (2018). A systematic review and meta-analysis of gender difference in epdidemiology of HIV, hepatitis B and hepatitis C infections in people with severe mental illness. Annals of General Psychiatry, 17(16). doi:10.1186/s12991-018-0186-2
  23. Iversen, J., Wand, H., Gonnermann, A., & Maher, L. (2010). Gender differences in hepatitis C antibody prevalence and risk behaviours amongst people who inject drugs in Australia 1998-2008. International Journal on Drug Policy, 21(6), 471-476. doi:10.1016/j.drugpo.2010.04.004
  24. Adams, S., & Carryer, J. (2019). Establishing the nurse practitioner workforce in rural New Zealand: barriers and facilitators. Journal of Primary Health Care, 11(20), 152-158.
  25. Esposito, C. L., & Sollazzo, L. C. (2019). Nurse Entrepreneurs: The Real Independent Practice of Nursing. Journal of the New York State Nurses Association, 46(2) 26-39.
  26. Nursing Council of New Zealand. (n.d.). Registered Nurse Prescribing.