The Lived Experience of Inequalities in the Provision of Treatment for Hepatitis C.

Sarah Louise Skyrme

doi:10.3389/fsoc.2021.649838

Abstract

The issues of health, illness, stigma and inequalities in healthcare provision, areas that in my role as a social researcher were already of interest and concern, shifted to a different perspective when I was diagnosed with hepatitis C. From this altered position, my body and lifeworld were a nexus point for a range of ongoing challenges around staying as well as possible, and the struggle to get my healthcare needs met. There is a gap between the support provided for some ill and disabled people, and the help that they actually require. This is particularly so for conditions that are not well understood, that have a low public profile, limited funding, and/or are in some way stigmatised due to perceived differences to social norms. Hepatitis C is one such condition, it is a viral disease that is transmitted through blood-to-blood contact and it causes ongoing damage to the liver. Because of the systemic nature of the disease, individuals may struggle to cope with the demands of work and daily living, and their lifeworld and opportunities are frequently limited. It can be challenging for the patient to advocate for themselves due to low energy levels, self-blame for getting ill, and the stigma associated with the condition. The first generation of effective anti-viral drugs emerged from clinical trials in 2013, but in the United Kingdom context, access was only possible for those with advanced liver disease. Therefore, many patients felt compelled to purchase the anti-virals through Buyers Clubs, whereby generic versions of the drugs are imported for personal use at a fraction of the market cost. In this article I draw on my own lived experience of joining a Buyers Club as an example of how risks and benefits are weighed, and to explain the contexts in which decisions are shaped and made.

Highlights

In this article I will discuss and explore my experience of becoming ill with hepatitis C and how the combination of ill health, limited treatment options, and financial constraints intersected and shaped the decision-making I engaged with
Hepatitis C is caused by a blood-borne virus that affects the liver, and transmission routes include direct blood-to-blood contact such as infected blood transfusions, needle-sharing, and unsterilized tattooing equipment (Hepatitis C Trust)
Blood donations have been screened for hepatitis C since 1991 in the United Kingdom, following on from the identification of the hepatitis C virus in 1989

Summary

INTRODUCTION

In this article I will discuss and explore my experience of becoming ill with hepatitis C and how the combination of ill health, limited treatment options, and financial constraints intersected and shaped the decision-making I engaged with. These experiences include the loss of health, and limited support mechanisms that led to moments when I felt devoid of any agency, uncared for and alone Those losses remain active memories that have changed how I view life because I experienced at first-hand how policy decisions shape the way that ill people cope and the resources they can access. When news emerged around 2013 that successful clinical trials were resulting in first generation life-changing drugs, time was spent waiting for the anti-virals to become available to the majority of patients This period of waiting was difficult for me to bear as it increased the risk that my diseased liver was going to become more damaged. I began to research and choose a reliable source and completed the necessary steps in the process of legally importing the anti-virals

DISCUSSION

CONCLUSION