Supporting people who use drugs & providers: hep C info & care Magdalena Harris London School of Hygiene and Tropical Medicine LJWG Conference - Hepatitis C in London – practical steps to elimination 17 November 2014, London.

Overview State of play in the UK: Prevention, testing & treatment? – What is the role of hep C literacy? Hepatitis C information needs: PWID & providers – Current resource provision Our response: LJWG & LSHTM partnership Information resource development & production The process …. The resources Next steps

The state of play in the UK …. Prevalence ~185,000 people living with chronic hep C Prevention 90% new cases due to use of unsterile injecting equipment Testing Only ~40% of people diagnosed: ~100,000 undiagnosed 36% of PWID attending drug services have never received a hep C test Treatment <3% receive treatment in the UK. Few are current PWID Elimination? Requires intensive scale up of prevention initiatives, case finding (often ex-PWID) & treatment provision for current PWID

What is the role of hep C literacy? For prevention – Enhance safe practices For testing – Reduce rates of undiagnosed For treatment – Increase access to & uptake of HCV treatment For health – Enable engagement in health care & HCV self management For empowerment – Enhance needed advocacy & activism

An information need: PWID Prevention Through them years, I have used a spoon that maybe someone else has used, but I’ve never used dirty works. You know, nothing dirty. (Max) Testing I’ve had boosters for hep C. I’m not due anymore boosters now. (Colin) Treatment With the treatment, you can’t use or drink alcohol or anything on top (Ivana) Hep C / cirrhosis I just want to know what’s going on with me, what do the pains mean? Can you tell, what is my [life] expectancy?... It’s scary because you haven’t got a clue what’s going on. (Frieda)

An information need: providers …. Missed opportunities for hep C prevention information Missed opportunities for testing Missed opportunities for treatment referral & initiation I was only diagnosed last June, but I had been backwards and forwards to the GP for many years just unwell and they did loads of tests, even gave me a hysterectomy, full hysterectomy, had the lot out... so I don’t know if that was necessary or not. (Jane) The [drug services] workforce haven’t got the right information so they don’t feel confident in helping someone to make the decision about treatment. (Focus group) I think that we lack the tools. Almost all that I do in consultation is verbal, and yet I’m a very visual person. I would much sooner somebody showed me in pictures what cirrhosis was … massively [ helpful] just to have a resource that I can show somebody what cirrhosis looks like. (Hepatologist)

Current resources Poor range & availability There’s nothing about hep C in the doctor’s surgery, there’s nothing about hep C in the hepatology clinic, you’d think that it’s about liver health, there’s nothing about hep C. (Sally) Language employed can be stigmatising, misleading, moralising “What kinds of people get hepatitis C...” “people around you are only at risk if they come in contact with your bodily fluids” “taking recreational drugs is dangerous and harmful to your health” Perceived as out of date / patronising … This is what is still on display in my GPs, this is ’03, they look dated … And the language in some of them, this is what I was given at [hospital] when we talked about treatment … the language used in that, I didn't like it at all, I found it very patronising. (Rita)

Our response …. Resource development plan (LJWG & LSHTM) Focus groups / workshops assessing need & developing content – Initial focus: treatment decision making resource Gilead support – making project tangible – Advisory board meeting, additional workshops, writer & designer A broader scope – Two booklets: Hep C info, Hep C care An iterative process – bottom up! – Resource development working group & advisory group

Wide range of involvement Role Workshop participation feedback Service users / PWID 510 BBV nurses 42 Drug service providers / leads 10 Researchers 20 Commissioners 21 Hepatitis C Trust staff 21 LJWG members 30 Public Health England 02 Industry 01 Total focus group/workshops & feedback: 20 month period Lambeth Service Users Council feedback

What was important? Clear, non-stigmatising language & visuals Rights rather than responsibility emphasis Harm reduction info acknowledging structural constraints to best practice Non-biased, not pushing treatment Drawing on research findings (re barriers & what is important to PWUD) Incorporating voices of people living with hepatitis C &/or PWUD Signposting links to other support

What was included? Resource 1: Hep C info Understanding hep C: prevalence, role of liver, natural history, cirrhosis, symptoms, transmission Testing: where to go, what it involves, antibody/PCR, testing reasons and rights, changing GP info, availability of DBS Disclosure: family/friends, work, finance, medical etc Staying safe: where to get injecting supplies, how to inject safely, tattooing / piercing info, transmission around the home /first aid Resource 2: Hep C Care Understanding hep C: genotypes, natural history, cirrhosis Living well with hep C – symptoms, self management, lifestyle Treatment: rights, eligibility (OST info, co-infection), testing / liver monitoring, new & current treatments, side effects, self management, support, appointment & medications, treatment pros & cons Support/ resource links (in both booklets)

Some examples Rights based All people with hep C are entitled to assessment and, unless there is a medical reason (contraindication) such as pregnancy, heart disease or severe depression, they are also entitled to treatment Real voices I come back and I told her, she was outside waiting for me, and she took one look at my face and she went, “It is isn’t it?” and I went, “Yeah,” and then I started crying and she went, “It’s alright, don’t worry about it, you know, I’ll do the test now and see if I’ve got it and if we have we’ll both start treatment and we do this together babe,”(Abel) Pragmatic harm reduction advice If you can’t clean a surface for preparing your hit or if you’re injecting outside, use a layer of tissue, toilet paper, or newspaper to lay your injecting equipment on.

Ongoing / next steps…. Workshop at 4 th National Recovery Conference, Glasgow Launch of resources at LJWG conference Resource circulation to Addaction South West, Blenheim CDP, Lambeth & Southwark Feedback collation, changes to content & redesign January 2015: larger print run & distribution Paper on process for peer-reviewed journal PHE has supported concept of wider roll out. Possible evaluation

Current design

Potential re-design

In summary Little knowledge among PWID about eligibility for treatment Little knowledge about new treatments on horizon Few referrals & treatment assessments despite eligibility Many missed opportunities for testing and diagnosis A desire for relevant hep C information: PWID & providers Resources were produced in partnership & through consultation Vital peers are central to any intervention development Information → advocacy → action I don’t think we can underestimate the impact of patient power or lobbying that actually brought about change in terms of accessing those drugs for people living with HIV. (Hepatologist)

Acknowledgements Everyone who took part in the resource development process!!! THANK YOU!!!! Lambeth Service Users Council Danny Morris, Jon Daniel, Dee Cunniffe, Nicola Brett, Claire Munro, David Badcock, Murad Ruf, Ashley Brown, David Nutt The Hepatitis C Treatment Journey study participants, partners & study sites. National Institute of Health Research, Gilead Sciences, LJWG Magdalena Harris is funded by a National Institute of Health Research Postdoctoral fellowship: NIHR-PDF