By Urte Macikene
My first day in my new role at Principle Consulting was spent at the Hepatitis C Patient Conference, run by our long-standing clients and partners, the Hepatitis C Trust. The conference coincided with World Hepatitis Day, an opportunity to highlight the organisation’s efforts to eliminate hepatitis C as a public health concern in the UK, and it’s work with international groups to meet the World Health Organisation target of global elimination by 2030.
Throughout the day, I assisted in filming videos of patients telling their stories. A queue of participants formed during the breaks, and all spoke with remarkable and impressive clarity and confidence of their diverse experiences. Many had contracted the virus through intravenous drug use, with injecting drug users being one of the most at-risk groups. Others had contracted the virus through other routes like blood transfusions.
One patient spoke passionately about how he had combined his engagement with the hepatitis C community with his activism in the gay community, and the discrepancy in awareness and service provision between hep C and HIV. The two viruses are often compared due to similar transmission routes and a possibility for co-infection. However, the global mortality rate from HIV has been declining, while global deaths from hep C are still on the rise, though the UK has seen an encouraging decline in mortality over the last two years.
In one session, a speaker asked all those in the room to raise their hands if they have or had hepatitis C, and the overwhelming majority of attendees did. When the speaker asked how many of them had cleared the virus, most hands stayed up. While many patients at the conference had endured the older interferon-based treatment, with an uncertain success rate and accompanied by a series of debilitating side effects, some had cleared it in the last few years with new direct-acting antiviral tablets. These come with few side effects and have a cure rate of over 90%.
This was the crux of the conference, and the cause of much optimism – hep C is curable, now via a highly effective and accessible treatment with few side effects. Yet an estimated 50% of the 160,000 people in England thought to be living with hepatitis C remain undiagnosed, with thousands more having been diagnosed in the past but since fallen out of touch with treatment services.
Later, I remarked upon the strangeness of feeling part of a minority as someone who had not had direct experience of the disease. I was grateful for the feeling, for the opportunity to evaluate my own position, to listen to the powerful stories of others. I was grateful for what, for many of the patients, must have been a remarkable and relieving reversal of every-day life – that they were surrounded by others who understood and shared their experience.
The Hepatitis C Trust is a charity with a clear goal – to eliminate its own need to exist. It is staffed mostly by people who have or had the virus. Principle has worked with the Hepatitis C Trust for over 10 years, and we see ourselves not as consultants, but as members of the Trust’s team, working out of the Trust’s offices and maintaining close staff relationships.
Over the years, our policy and parliamentary support has contributed to a series of ground-breaking developments in the hep C policy landscape, due in large part to the tireless and inspiring efforts of patient activists in keeping the issue on the agenda. We have been a key influence behind the forthcoming publication of a hepatitis C elimination strategy in Wales, and a broader commitment to elimination in Scotland. We are continuing to work towards elimination delivery strategies in Scotland and England.
Over the next few months, I look forward to returning to Edinburgh, my alma mater and home for five years, to launch a hepatitis C elimination blueprint, produced by The Hepatitis C Trust with the support of several MSPs. The blueprint will set out clear barriers and goals, pressing the Scottish Government to follow through on its 2015 commitment to eliminate hepatitis C.
It is exciting and inspiring to work with charities which are genuinely user and membership led on a daily basis, an approach that permeates everything about the organisation’s culture and operations. It is the kind of work that Principle is committed to contributing expertise to, and I’m thrilled to be on the team.