{"id":2187,"date":"2019-07-25T09:15:25","date_gmt":"2019-07-25T08:15:25","guid":{"rendered":"https:\/\/blogs-staging.imperial.ac.uk\/imperial-medicine\/?p=2187"},"modified":"2019-07-25T17:07:33","modified_gmt":"2019-07-25T16:07:33","slug":"an-open-letter-to-the-participants-of-my-hepatitis-c-study","status":"publish","type":"post","link":"https:\/\/blogs-staging.imperial.ac.uk\/imperial-medicine\/2019\/07\/25\/an-open-letter-to-the-participants-of-my-hepatitis-c-study\/","title":{"rendered":"An open letter to the participants of my Hepatitis C study"},"content":{"rendered":"
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\u00a9 Kotryna Zukauskaite<\/figcaption><\/figure>\n

For World Hepatitis Day<\/a> (28 July), Dr Philippa Prister\u00e0 shares an open letter to the people that she met and interviewed early last year as part of her research study exploring the experiences of people living with and accessing care for Hepatitis C, and their perspectives on cure.<\/strong><\/p>\n

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Dear all,<\/h2>\n

I am writing to you because you took part in my interview-based study \u2018Viewpoints from hepatitis C: accessing and experiencing cure\u2019*<\/a>. Some of you I met about a month before I gave birth to my daughter, others would have met my colleague Jane Bruton who kindly took over while I was on maternity leave. Since my return to work, I have spent my time reading over the interviews to see what key themes came through and would like to take this opportunity to update you.<\/p>\n

I want to say thank you<\/h2>\n

Thank you for sharing your story; for sitting down with a complete stranger, a heavily pregnant one, to be interviewed about your life. To help me build the context around your experiences and better understand your story, you revealed a great deal about your expectations and your beliefs, your current and past behaviour and their consequences. I was struck by your openness, and so grateful for your trust.<\/p>\n

Here\u2019s what you said about cure<\/h2>\n

One question I asked was \u201cWhat does the word cure mean to you\u201d; a question that highlights your motivations for treatment and your expectations of the future. A number of you who had once injected drugs described cure of hepatitis C as a fitting \u201cclosure on that chapter\u201d of your life. You shared how optimistic you were about the future, and how grateful you were for the care and support of the healthcare providers at St Mary\u2019s. But you also raised one interesting and important point: \u201cCure is a dangerous word for an addict\u201d.<\/p>\n

I know a number of you had tried to clear the virus in the past using earlier types of hepatitis C medication and how the knock-back that followed when that failed had been terrible. You shared stories of returning to drugs and believing you would never get cleared of the virus. You highlighted how \u2018hope\u2019 is one thing many addicts struggle with, so I can see how a word such as \u2018cure\u2019 may sound like a dangerous promise. Improved access to new direct-acting antivirals over the past few years has revolutionised treatment for hepatitis C in England, with latest figures suggesting cure (or viral clearance) can now be achieved in at least 95% of people treated<\/a>, but it\u2019s still not guaranteed. And what is going to be \u2018cured\u2019 is also open to interpretation, considering there are often no visible symptoms. Beyond clearing the hepatitis C virus, there\u2019s an awareness of continuing risks and consequences that may also concern you.<\/p>\n

Hepatitis C doesn\u2019t just affect people who inject drugs. A blood transfusion given in the years before screening began, a tattoo abroad, sexual contacts \u2013 these are three of the less well-known routes of hepatitis C transmission that came up in interview. You all described the relief that \u2018cure\u2019 or clearance of the virus would bring. Even if it hadn\u2019t had a huge impact on your lives, you shared how hepatitis C was always in the back of your mind, making you particularly conscious about possible onward transmission. The silence of the disease made it easier to forget the health risks at first. But as you got older and faced other health concerns, the \u2018ticking time bomb in [your] liver\u2019, as one of you described it, weighed more heavily on your mind, leading you to hope curative treatment would be developed, before it was too late.<\/p>\n

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\u00a9 Kotryna Zukauskaite<\/figcaption><\/figure>\n

Finally, some of you were also living with other chronic conditions, such as HIV. In this context, you saw treatment as eliminating one of the viruses and removing the additional health risks that come from living with both conditions. Some of you had been diagnosed in the past few years so were fortunate not to have to wait too long for treatment. However, I sensed a greater urgency for treatment among you compared with those who were not also living with HIV. The accelerated harm that living with HIV and hepatitis C is believed to cause was a huge motivator, but also a key factor underlying the stigma that you confirmed still exists towards hepatitis C within the HIV community.<\/p>\n

Many of you had been surprised by your hepatitis C diagnosis and talked about the lack of relevant information that was available to you on risks and routes of transmission, particularly for gay and bisexual men. Cure was also seen as less definite by some, either due to past treatment failure or because of the risk of acquiring hepatitis C again. As one of you said, “it\u2019s almost impossible [to monitor]\u2026 if someone says they\u2019re Hep C negative, unless they haven\u2019t had sex since they were tested, they can\u2019t say for sure.\u201d<\/p>\n

Here\u2019s what I plan to do next<\/h2>\n
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\u00a9 Kotryna Zukauskaite<\/figcaption><\/figure>\n

So much can be gleaned from the 12 hours’ worth of interviews that I collected. You shared your experiences and expectations of hepatitis C and cure, but you also told me things I wasn\u2019t expecting to hear; like the fact \u201cno-one wants to have safe sex anymore\u201d, or that \u201cpeople don\u2019t really know or care\u201d what hepatitis C is, or the barriers caused by lack of awareness, lack of disclosure and lack of proactive hepatitis C testing. It\u2019s not always possible for all elements of research to lead to change. However, now that you\u2019ve told me, here\u2019s what I\u2019m going to do:<\/p>\n