TABLE OF CONTENTS
Identifying and addressing key 2016 obstacles to the elimination of hepatitis
C as a public health concern ............................................................................................................4
THE HCV SITUATION NOW & IN THE NEXT SIX MONTHS.......................7
1.The UK HIV Treatment Cascade....................................................................................................7
2.Moving towards a UK HCV Treatment Cascade ....................................................................8
3.Treatment access across Europe................................................................................................10
4.New Treatments for hepatitis C: Impact on morbidity and mortality – What could
possibly go wrong....................................................................................................................................11
5.Current HCV research gaps and challenges.........................................................................13
6.Generics in the UK..............................................................................................................................14
Comments on key opportunities and challenges across the HCV treatment
cascade in the next 6 months. ..........................................................................................................14
KEY GAPS AND CHALLENGES AND POSSIBLE FIXES IN THE
TREATMENT CASCADE INTHE NEXT SIX MONTHS...............................15
2.People who use injecting drugs workgroup............................................................................17
3.South Asians Work-group ...............................................................................................................19
CONCLUSIONS & ACTION PLAN FOR THE NEXT 6 MONTHS ..............21
Identifying and addressing key 2016 obstacles to the
elimination of hepatitis C as a public health concern
Uniting Voices for HCV Elimination was a key stakeholder meeting
that included clinicians, researchers, organisations, HCV patients and
former patients, people sitting on government bodies and pharmaceutical
representatives. The meeting aimed to serve as the starting point for
strategic and ongoing collaboration to proactively address gaps in the
HCV treatment cascade, in particular:
Awareness of HCV; awareness of curative treatment and related
Testing and diagnosis rates
Getting diagnosed individuals into treatment and care
Prevention of new infections and re-infection
In 2015 there were an estimated 214,000 individuals chronically infected
with hepatitis C in the UK. Deaths from hepatitis C related end stage liver
disease have doubled over the last decade – the majority occurring in
people under the age of 60 years1.
Although more people with hepatitis C are now getting tested across the
UK, awareness of hepatitis C infection is still relatively low and, as HCV
can exist for years without symptoms, many people are not receiving the
necessary care and treatment. As a result HCV is a leading cause of liver
disease in the UK, with 15% of all liver transplants in England, carried out
in patients with hepatitis C-related disease between 1996 and 20142.
Furthermore, data from several countries has shown that even after
being diagnosed, there are several stages at which people can disappear
from the care continuum. Until recently, HCV therapy was based on a
course of pegylated interferon and ribavirin. Side effects from this therapy
are numerous and many patients either discontinued therapy or decided
to wait until new treatments became available. Despite NICE recent
approval of new, highly effective drugs for all patients, the majority of
chronically infected people are still not being treated and uncertainty
remains amongst patients and their doctors as to who is eligible for
treatment. Patients who are either lost to care or just unwilling to
undertake interferon-based therapy remain unaware of the recent
changes and still need to be informed about these new treatment
There is an urgent need for clear pathways to help individuals navigate
the clinical process so that those who test positive do not fall through the
net. Increasing awareness, diagnosing people, retaining them in care and
ensuring access to care and treatment, including curative treatment, are
all part of the care pathway or `treatment cascade` that ultimately
determines who gets cured of hepatitis C.
Following a series of face to face meetings with key stakeholders, the
meeting was convened by ReShape and The Hepatitis C Trust to
promote a coordinated approach and encourage HCV-impacted
communities, organisations and individuals to take a more active role in
supporting hep C patients, clinicians and researchers in their efforts.
The meeting was based on a review of the hepatitis C treatment
cascade, providing a snapshot of the present moment, allowing the
participants to map out, immediately and clearly, areas of concern and
develop ongoing coordination for follow-up actions. The full-day
programme included panel discussions and presentations as well as a
planning session focusing on developing solutions and follow-up
community meetings in London, Birmingham and Manchester.
This report is a summary of the meeting and of the key
recommendations that will form the basis of a priority action plan for
viral hepatitis to be implemented in the next 6 months.
Public Health England: Hepatitis C in the UK 2015 report
Bryan Teixeira and Duncan Hamilton, meeting Chairs, officially opened
the meeting. Rachel Halford, The Hepatitis C Trust Deputy CEO and Ben
Collins, International HIV Partnerships (IHP) Director and ReShape
Convenor, welcomed the participants and presented the concept behind
Rachel Halford welcomed the meeting participants, expressing her hope
that this meeting would be the first of many events bringing people
together to work towards hepatitis C elimination as a public health
She gave a brief overview of what had happened in the past year with
regard to access to the new treatments, from the original approval by
NICE, the set up of an operational delivery network (ODN) and the
sequences put into place within ODNs to measure and hold the network
to account. This sequence of events had eventually culminated in NHS
England capping the number of people able to access the new drugs.
The purpose of this meeting however was not to focus on treatment at
this point but on the bigger picture. Rachel reminded the meeting that the
World Health Organization has adopted the first ever global health sector
strategy for viral hepatitis with a goal of eliminating hepatitis C as a public
health threat by 2030. The UK government has signed up to this goal
and, under the NHS constitution, patients have the right to drugs and
treatments recommended by NICE, if doctors consider them as clinically
appropriate for their patients.
However, while securing patients’ access to all the drugs remains a
priority for The Hepatitis C Trust and many other organisations, a
successful HCV elimination programme will require more than just
access to drugs. Other key areas need urgent attention, such as:
Prevention of new infections and re-infections
Diagnosis of people already infected
Linkage to care
The elimination of hepatitis C by 2030, she told participants, could not be
achieved by organisations working alone. All stakeholders needed to
unify and work together to create a universal framework that would help
mapping out the current situation, visualising where we are today, where
we need to go and what is needed to get there.
The aim of the meeting today is to start working towards the development
of this framework.
Ben Collins explained the background to the Uniting Voices meeting.
ReShape is an independent think-tank which was set up to reinvigorate
the community responses to HIV, hepatitis C, and related sexual and
mental health concerns for best sexual health and well-being. During The
Hepatitis C Trust conference last year, frustrations about drugs costs,
lack of access to drugs and the general lack of community engagement
were repeatedly cited as obstacles to hepatitis elimination as a public
health concern by health professionals and researchers alike.
Consequently, ReShape approached The Hepatitis C Trust to set up a
ReShape’s lab to focus on these issues. ReShape’s labs are small
working groups, set up to identify gaps, needs and possible responses.
Their mission is to promote activities (either inside ReShape or
externally), and act as vehicles for further action and evaluation.
The HCV lab was set up in 2015, comprising patients living with HCV and
activists. It became clear very early on that patients wanted their voices
to be heard, they wanted to be united and they wanted to be SMART.
The group also decided to be representative of all key populations and to
move towards elimination together. Using the 4P analysis (position,
problems, possibilities and proposal), the idea of hosting a stakeholders
meeting to facilitate collaborative work towards the overall goal of
elimination was developed.
With this aim in mind, representatives of the HCV Lab carried on a series
of face-to-face meetings with a diverse and representative range of
clinicians, researchers, and organisations to shape the meeting agenda
and draw up a list of participants. A series of outreach community
meetings involving different key populations throughout the UK was
planned for Birmingham, Manchester & London, as follow-ups to this
THE HCV SITUATION NOW & IN THE NEXT SIX MONTHS
1. The UK HIV Treatment Cascade
Laura Waters, Mortimer Market Centre, London
Laura Waters gave an overview of treatment cascades, focussing
specifically on the UK HIV Treatment cascade.
Cascades are relatively new ways of looking at diseases, giving a
broad overview of how well a given condition is managed. By looking
at the overall picture rather than concentrating on people on treatment,
as in clinical trials, they have emerged as a way to identify gaps in the
continuum of care.
A treatment cascade for an hypothetical condition works by first
looking at the estimated number of people with the condition, then at
how many are diagnosed, how many of those diagnosed are in care,
how many are treated and how many are optimally treated.
In the UK, the HIV treatment cascade shows us that out of an
estimated 110 000 people with HIV, 83% are diagnosed, 75% of those
diagnosed are on treatment and 70% of people on treatment are
virally suppressed. In the US by contract, the HIV cascade shows that
although most people with HIV are diagnosed, there is a big drop in
retention into care (30% of people living with HIV are on treatment and
Cascades can also be aspirational and be the basis of public health
targets and interventions. In 2014, UNAIDS 90-90-90 goals towards
ending the AIDS epidemic by 2030 were set: 90% of all people living
with HIV will know their status, 90% of people aware of their diagnosis
will be on treatment and 90% of people on treatment will be virally
suppressed by 2020. This means that overall 73% of all people with
HIV globally should be undetectable on treatment. The estimates are
that by achieving this by 2020, we could end the AIDS epidemic by
2030. The reality however is that globally only 32% of people of
treatment are undetectable.
Even though we are nowhere near achieving this target, there is
already a call to add a 4th 90 goal to the HIV treatment cascade: 90%
of people treated well are having a good quality of life. This adds a
concept of well-being often missing from treatment cascades.
2. Moving towards a UK HCV Treatment Cascade
Chloe Orkin, St Barts Hospital, London
In her presentation, Chloe Orkin looked at HCV and HIV testing
strategies in terms of similarities and differences.
While deaths attributable to HIV in Western Europe have decreased
with the introduction of antiretroviral therapy in 1995, HCV mortality
has been steadily increasing.
In terms of HCV care cascade, essentially we are looking at the great
unknown. Estimates are that around 50% of people with HCV are
being diagnosed, approximately 3% of people diagnosed are treated
and 63% are achieving a sustained virological response.
Whether looking at the HIV or the HCV cascade, the first step of
diagnosing 90% is not being reached: Screening. In HCV, testing is
crucially important, as there is a cure available.
Unlike HCV, HIV testing is happening in many different places (Clinics,
STI centres, saunas, prisons, prenatal clinic, GPs, DIY testing etc).
Testing methods are tailored to the settings. In HIV, seroprevalence
data underpins testing strategies. Testing in order to be acceptable
and destigmatising has to be de-exceptionalised.
In the UK, HIV testing is universal in medical settings while HCV
testing is targeted. This raises the question as to whether HCV cases
are being missed. To answer some of this question, a roll out phase of
a viral project testing for HCV in emergency departments is currently
underway in Royal London Hospitals and so far the results indicate
prevalence similar to the initial phase of the project: ≈3%, which is a
lot higher than current estimates for the general population.
In HCV no anonymous seroprevalence work is done. At present, there
is little willingness to discover the actual prevalence rate as it could
have massive implications for costing.
3. Treatment access across Europe
Raquel Peck, World Hepatitis Alliance, London
Raquel Peck provided a snapshot of treatment access across Europe,
framed against the backdrop of the new sustainable development
goals, including the elimination of hepatitis, to which 194 governments
have committed by 2030, including the UK. This document carries
time-bound goals: 90% of people must be diagnosed by 2030, and
80% must be treated. At present the UK only treats 3% of people
In Europe, 28 EU countries account for nearly 70% of the total
European population with an estimated 3.6 millions infections, of
which about a third have been diagnosed, 133 000 treated and 97000
cured. The average age of people diagnosed is 54 years old,
highlighting the need for rapid treatment. Out of these countries, 10
countries account for 85% of all infections and 6 countries account for
80% of treated patients (well out of the global 80% target needed for
In France, from September 2016 hepatitis C treatment will be given to
all people diagnosed (up to 230 000 people) and the government is
currently looking at renegotiating prices.
In Portugal, following great advocacy work from NGOs, the country is
now committed to elimination. Interestingly, the government has
agreed a deal whereby it only pays for people who are cured.
In Germany, civil societies came up with an eco-hep model describing
2 scenarios: Maintaining treatment and screening rates at a cost of
13.2 billions by 2040 or maintaining treatment rates but targeting
screening and prevention efforts at a cost of 14.2 billions. The results
of this model showed that for a small difference in cost, the second
scenario would have a huge impact on hepatitis rates. Germany is
unofficially working towards elimination by 2028.
4. New Treatments for hepatitis C: Impact on morbidity and
mortality – What could possibly go wrong?
Helen Harris, Public Health England, London
Helen Harris spoke about the new treatments and their potential
impact in terms of reducing morbidity and mortality. She also
highlighted some of the difficulties that could arise on the road to
elimination of hepatitis C as a serious public health threat.
Although viral hepatitis had a global burden of 1,46 millions deaths in
2013, until recently, viral hepatitis has generated a lower level of
attention than other diseases with lower disease burdens, like HIV and
To reach the new WHO target of elimination of hepatitis C as a major
public health threat by 2030, diagnosis and treatment rates need to
increase to drive down morbidity and mortality (by 10% by 2020 and
65% by 2030) while the number of new infections needs to decrease
(by 30% by 2020 and 90% by 2030).
New drugs have the potential to revolutionise HCV care; thanks to
their shorter treatment durations and less side effects, they are easier
to roll out in community settings. However, these new direct acting
antivirals are very expensive. It is therefore essential to identify the
consequences of focussing efforts on tackling severe liver disease vs
reducing transmission via treatment as prevention. To figure this out
two mathematical models were used:
A back-calculation model to estimate the impact of treatment of
mild, moderate and compensated cirrhosis on new cases of HCV
related end stage liver disease and hepatocellular carcinoma.
A dynamic model to determine the impact of the same treatment
strategies on incidence and prevalence of chronic infection in
people who use injecting drug, the main group at risk of infection
The results showed that dramatic reductions in HCV-related severe
liver disease are possible when people with advanced disease are
successfully treated, but this level of impact will not be sustained
beyond 2020 if only people with cirrhotic liver disease were targeted.
People with moderate stage disease also needed to be treated, and
they needed to be tackled quickly. Diagnosis and retention in care
therefore were key to this strategy.
CONCLUSIONS: WHAT IS NEEDED FOR ELIMINATION
Active screening & strong prevention efforts
Switching to the new drugs & expanding treatment to everyone
Increasing eligibility to older patients to reduce liver related
Stronger patient voice
Projections for reducing HCV disease burden will not be met if
we fail to treat at least 70% of those with cirrhosis
With regards to treatment as prevention, in England the main route of
transmission is through injecting drug use. Theoretically if we treat
those individuals we should be able to reduce the prevalence within
this group, and therefore the number of people getting infected. Using
the same strategies of treating people at different stages of the
disease, the modelling results showed that treating mild-stage PWIDs
was required to make a substantial impact on transmission. Treatment
as prevention, combined with other harm reduction measures have
the potential to reduce the prevalence and incidence of HCV among
PWIDs and need to be tested urgently.
SUMMARY OF CURRENT CHALLENGES & NEEDS
Cost of new drugs
Need to restructure treatment services to facilitate rolling-out
drugs to all
Need to raise awareness to increase testing
Need for improvement in prevention and harm reduction
Need to all work together as a group
5. Current HCV research gaps and challenges
Graham Cooke, Imperial College, London
Graham Cooke explored the current gaps in research as it stands
today, focussing in particular on what will be important in the next 5
years and what could be tested.
We still need a vaccine. As we get through the patients pools and we
start to think about elimination, evidence coming through from
modelling studies support this.
In terms of re-infection and recurrence, if we model out the risk of
recurrence after successful treatment in people at risk, we see
recurrence rates of around 5%, possibly higher for HIV co-infected
people. Projection over time for MSMs co-infected with HIV shows
that only by scaling up treatment, we can start seeing an impact on
transmission, however it will need to be combined with other
interventions in terms of risk reduction. We need to focus on how to
prevent people from being reinfected.
We will need better strategies for diagnosing people and will need to
diagnose as many people as we can.
We will also need to be smarter on how to use the new treatments.
New drugs are in development and coming forward for licensing but
we have not yet worked out how to use these treatments effectively
without “over-treating” people. A recent case from Glasgow illustrates
that some patients can be cured with much shorter treatment. This
would also have an impact on costs.
More data on resistance is needed. At present, resistance testing is
not part of tailored therapies but as data emerges, this will probably
change. So far, resistance does not appear to affect patients on
longer treatment, however it is worth noting that resistance is not
totally understood yet. New sequencing methods will give us more
information both on resistance but also on transmission.
To improve treatment rates, we will need to overcome the costs
barriers. Making smarter use of the treatments we have and not over-
treating patients will help reduce some of costs. At the same time, the
imminent arrivals of newer and effective drugs will increase the
competition between manufacturers. Flat pricing structures, increased
level of activism from the community sector and increased access to
generic treatments are other ways of achieving price reduction.
Finally, HCV is a global challenge: Viral hepatitis is the 7th cause of
mortality in the world in 2016. Hepatitis C has overtaken HIV, malaria
and Tuberculosis as a cause of mortality.
6. Generics in the UK
Graham Cooke, Imperial College
There is increasing interest in access to generics for those who cannot
access treatment through the usual channels. Generics are the same
compounds as original pharmaceutical products and are usually
produced off patent or with some voluntary licence agreement.
Patients can access generics online or through buyer’s clubs, such as
fiXHepC and are entitled to import drugs for 3 months supply. The
Redemption study is currently supporting over 400 patients worldwide
taking generics versions of Sofosbuvir, Ledipasvir and Daclatasvir.
Outcomes so far are broadly similar to patients receiving patented
drugs with few side effects.
Their use is fast becoming a day-to-day question for the clinics: are
generics safe, will they work, will the clinic monitor the patients using
them? Monitoring patients taking generic drugs not prescribed in the
UK may be difficult to arrange and support varies between Trusts.
They are also tensions between specialities. Issues around equity and
using resources in clinics have been raised.
Guidelines are currently being written and should hopefully be ready
soon but it will be down to each Trust to negotiate issues related to
Comments on key opportunities and challenges across the
HCV treatment cascade in the next 6 months.
Charles Gore, Hepatitis C Trust
Charles Gore summed up the morning discussion, and set the scene
for the working groups in the afternoon session by highlighting some
of the questions that would need answering if we were to respond to
the HCV epidemic successfully.
Elimination has to be our goal. The UK has signed up to it, and it is the
global ambition. We should be able by 2030 to have a reduced
mortality by 65%.
Although cascades are a very useful way of looking at the
management of hepatitis C, they do not always help us think about the
details. For example, prevention does not feature in the treatment
cascade but re-infection is potentially a critical issue in all key
populations. Awareness of HCV and how we tackle stigma will be
crucial to preventing re-infection.
Questions remain on how to get the large amount of people who are
undiagnosed to come for testing, as well as how often and where?
Once people have been tested, we still need to ensure that they do
turn up for an assessment. Should we bring the assessment to them
instead? And how do we keep people engaged especially if we are not
treating them? Run rates currently are creating barriers to treatment in
the community, if not everyone can be treated, it is difficult to maintain
interest and retain people into care.
We also need to look at ways to support people, not just in term of
linkage to care but also in terms of quality of life. Treatment must be
more than just a medical intervention. People often need support to
stop being a person with a chronic illness and they need help to move
Re-infection is creating reluctance to treat and we need to know at
which point and where this is occurring and we need to think about
strategies to make sure it does not. Do we use cluster treating, do we
use messages, and where, what kind and how?
None of these questions and challenges can be addressed without
community intervention and collaboration across the sector.
KEY GAPS AND CHALLENGES AND POSSIBLE FIXES IN
THE TREATMENT CASCADE IN THE NEXT SIX MONTHS
The afternoon session was dedicated to exploring the current gaps
and challenges across the treatment cascade. The participants were
split into 4 groups, each focussing on a key population:
People who use injected drugs
Each group was asked to look at the overall picture and select 3 key
topic areas, which they felt would be crucial to improve the HCV
treatment cascade in the next 6 months, underscoring doable goals in
each of these areas. Based on this initial assessment, they then went
on to identify specific actions that could be taken by organisations,
health professionals and individuals in order to reach the stated goals.
These could be steps by individual organisations, actions across a
network of organisations or actions to be taken by the affected
The ensuing worksheets were to provide the foundation of a
framework around which all the key stakeholders could engage and
strengthen the response to hepatitis in the next 6 months as well as
improve the collaboration and coordination of activities across the
sector. It is hoped that ideas generated from these workgroups will be
shared across organisations and other stakeholders to help them
identify possible next steps in their programme planning.
In addition to shaping key opportunities and actions for the next 6
months, the group sessions also compiled a list of other gaps and
challenges, which although not considered immediate priorities, will
need to be revisited at a later date.
1. Co-infected workgroup
People living with Hepatitis might also have co-infections such as HIV.
Linkages between HIV and hepatitis services, as well as access to
effective treatments for both infections, are needed to ensure the
effective management of co-infection and to secure the health gains
acquired through antiretroviral treatment. With decreased HIV-specific
mortality, HCV has become a major problem in co-infected patients.
Despite a long history of activism around HIV, there is still a lack of
engagement from affected communities around hepatitis and a
substantial amount of stigma and ignorance surrounding the virus.
Public education and awareness activities will be key strategies for
improving public understanding of viral hepatitis and constitute the first
step on the road that will ultimately lead to an informed and active
Goal 1.1: Build a community around hepatitis
Proposed activities: Development of safe spaces for
discussions around hepatitis C and HIV (physical spaces but
also virtual spaces). These could include movie nights, stigma
confrontation events, peer support groups; social media pages.
These safe spaces will provide a network of support and
understanding in a “controlled” environment where people will
feel comfortable enough to contribute to the discussion on HCV,
HIV and related issues and support one another without feeling
marginalised or stigmatised. Safe spaces can also help bridge
gaps between the different communities and link potential allies
in various social surroundings, thus opening up the possibility of
stronger united communities.
Potential partners: GMFA, ReShape, Positively UK, Hepatitis
Needs: Spaces, network of people, promotion of events.
Goal 1.2: Produce a consistent guide on HCV acquisition,
treatment and rights relevant to all affected communities
Due to rapid changes and the diversity of populations affected by
HCV and HIV, it is currently difficult to find resources that are easy
to read and with clear defined messages that would speak to all
Proposed activities: Development of simple patient information
leaflets and dissemination into the community. It should include
a call to action to increase participation and create
empowerment: once you have read the leaflet, this is what you
can do to participate.
Potential partners: BASHH, I-Base, HepC Trust, NAM etc.
Need: Development and distribution costs.
Goal 1.3: Create a national prioritisation system for treatment
There is currently no national prioritisation tool, only variable
scores. A national prioritisation system would enhance decision-
making and facilitate equitable access to treatment across the
country. Health professionals treating patients also need guidance
regarding the use of rapidly evolving regimens, including decision
Proposed activities: Development of a fair and equitable
proposal for prioritised groups based on a point system. This
will need to be transparent with justifications.
Potential partners: NAT with the help of the HepC Coalition and
Needs: Agreed cooperation, a digital space to produce this tool,
development of a parliamentary group to lobby for this.
2. People who use injecting drugs workgroup
Limited knowledge about HCV, limited accessibility to testing
locations, negative perceptions from healthcare staff about poor
adherence and ongoing substance use, are all barriers to HCV
testing and care for people who use injecting drugs.
When planning interventions for people who use drugs, it is
therefore important to ensure that services are low threshold,
accessible, and responsive to the needs of people who use drugs.
At the same time, community awareness needs to be improved by
developing and mobilising community resources: outreach, face-
to-face and peer-to-peer contacts through, for example, community
cafés. Outreach helps to bring treatment and testing services to
people and raises awareness about available health services.
Outreach peer workers can also be a reliable source of harm
reduction information and services, not only to people who use
drugs and their families and friends, but also to agencies providing
services to drug users to whom they can provide invaluable
feedback . Outreach workers can be opinion-makers and raise
awareness of HCV and drug use among communities.
Goal 2.1: Bring Hep C care into the community as an
alternative to hospital-based clinics
Proposed activities: Development of a community clinic - A
community-based clinic staffed with key health professionals
would fill both a therapeutic function and a diagnostic function.
Additionally easy and friendly access to care would engage
people to participate in a more productive dialogue about their
Potential partners: Hospital Trust, CCGs, drug services and
other relevant services, services users/peers, commissioners.
Needs: Development of peer support to ensure treatment take-
up and adherence and recruitment and training of “champions”
in the local area to support the clinical team and their patients;
Hospital buy-in of relevant staff;
Mobile fibroscan for the clinic;
Service level agreement agreed with commissioners;
Development of pack for setting up a community clinic;
Goal 2.2: Raise community awareness
Proposed activities: Development of a peer-to-peer model and
of staff training; advertising campaign.
Potential partners: Commissioners, services providers,
community groups, peer coordinators, champions.
Needs: Good information, support and training for peers,
access to overall support and expenses. Staff training. Open
doors policy for support services.
Goal 2.3: Reach out to people who are not accessing drug
Proposed activities: Outreach and testing campaigns in
homeless hostels, pharmacies and needle exchanges; testing
at point-of-care; staff member at testing point and peers training
so they can do the test; “Talk and test” activities with peers
giving the information then performing the test.
Potential partners: Needle exchanges; pharmacies; housing
providers; local authorities; champion lead services.
Needs: Training for peers and pharmacists to perform the tests,
funding for testing kits, development of pathways.
3. South Asians Work-group
HCV infection rates in some South Asian countries, such as
Pakistan, have been shown to be as high as 5 to 7.5%. Medical
care is very much injection-based and carries a high risk of HCV
transmission. Furthermore, common cultural practices such as
block circumcision, shaving rituals (at births, during Haji) are also
high-risk activities. People of South Asian origin have been shown
to be substantially at higher risk of HCV than the general UK
population, particularly if they have visited high prevalence
countries and have received medical or dental treatment or shared
razors while abroad. At the same time, relatively low levels of
awareness and stigma surrounding hepatitis C continue to pose
obstacles to testing and care.
Goal 3.1: Improve testing rates and retention in care by
raising awareness of hepatitis C
Proposed activities: Awareness campaigns on local radio;
development of “Asian Ladies” groups to talk to the community
(Reading has been running very successfully such an initiative
which could be rolled out in other cities), awareness campaign
on BBC Urdu.
Potential partners: HepC Trust, local radios, existing Asian
ladies groups, NHS services, local religious leaders.
Needs: Identify sites to send people for testing and care,
collaboration with partners to be set up, identify existing training
resources to train Asian Ladies.
Goal 3.2: Distribution of emergency medical travel kits
Proposed activities: Distribution of medical travel kits, with set of
colour-coordinated needles. These kits have already been
produced, but need to be rolled out for under £10. To be easily
accessible, they also need to be made available in a variety of
settings related to the travel industry specialising in South Asia.
Potential partners: Hep C Trust, manufacturers of travel kits,
pharmacies & travel industry for promotion and distribution.
Needs: Negotiations with travel kits manufacturers through the
HepC Trust, contact with travel agents, travel clinics etc.
Goal 3.3: Address Cultural differences
Proposed activities: Awareness campaigns and information
dissemination on the risks of circumcision and shaving in
culturally and linguistically appropriate ways (leaflets in
specialised travel agents, fact packs for mosques, oral
information sharing with Asian ladies).
Potential partners: Asian Ladies, Imams and council of
mosques, travel agents.
Needs: Collaboration with councils of mosques, development
and training of Asian ladies group.
In addition, all 3 goals would require an in-depth look at the
various stages involved in the process of travelling to determine
where hepatitis C awareness could be promoted and information
distributed: Airlines, travel clinics, travel agents, visa services etc.
In October 2013 Public Health England (PHE), NHS England and
the National Offender Management Service (NOMS) agreed to
introduce an opt-out testing policy for hepatitis B, hepatitis C and
HIV across the prison estate by 2017. Although some prisons,
such as HMP Pentonvile, have implemented the policy, there are
still issues that need to be addressed across the prison estate.
There is, in particular, no clear picture as to which prisons are
implementing the policy and which are not, highlighting the need
for a tracking tool in order to map out prison regions and uptake of
this policy. At the same time, prison staff lacks awareness of HCV
and prisoners lack awareness of both HCV and opt-out testing.
The development and training of HCV champions or Opt-out
champions in each prison would provide ownership on ensuring
the policy is fully implemented.
Goal 4.1: Raise awareness amongst prisoners, health care
staff and prison staff on HCV and Opt-out policy testing
Proposed activities: Training of staff: 1 or ½ day training
delivered by voluntary organisations such as HCT who already
have delivered some training. Education for prisoners utilising
prison radio, poster and leaflet campaigns. Identification and
training of HCV champions in each prison.
Potential partners: PHE/NOM’s, Hepatitis C Trust, NHS Health
Needs: Training programmes for health and prison staff,
involvement of voluntary organisations, leaflets/posters/DVD.
Goal 4.2: Implementing the opt-out testing strategy across the
Proposed activities: Monitor the roll out and hold areas and
specific prisons to account, using the regional format map-out
the progress of prisons to date and research whether they are
using Fibroscans or Elf testing.
Potential partners: NHS England Health and Justice, PHE,
voluntary sector organisations.
Needs: Mapping of all regions for individual prison data
regarding the implementation of opt-out policy & the use of
Fibroscan or ELF, details of hospital links, ODN areas.
Goal 4.3: Support in place for all prisoners testing positive,
whether still in prison or released into the community
Proposed activities: Train peers in prison and local communities
to work with patients, whether in prison or in local communities,
and help expanding access to testing and treatment. Utilise
trained Peers on patient councils to provide support to patients
in prison ensuring their voices are heard in the local ODNs.
Potential partners: Community Rehabilitation Companies
(CRC), prisoners who are engaged with services, patient
council members, voluntary organisations.
Needs: Agreed working arrangements between voluntary
organisations and prisons/CRC, access to prisons, promotion of
peer-to-peer in prisons.
CONCLUSIONS & ACTION PLAN FOR THE NEXT 6
In May 2016, the 69th World Health Assembly (WHA), formally
adopted the Global Health Sector Strategies for HIV, viral hepatitis
and sexually transmitted infections (STIs). This was an important
milestone, which fully aligned the three strategies with the attainment
of the Sustainable development goals. The World Health
Organization’s (WHO) global health sector strategy on hepatitis
defines for the first time global targets of eliminating viral hepatitis as a
major public threat by 2030, starting with a 30% reduction in incidence
The strategy defined a set of priority actions and interventions for
countries to undertake, centred around services and medicines, which
need to be covered in whole or in part by public funding to ensure
access to services to all who need them. This national health
improvement framework covers the entire cascade of care, from
prevention and diagnosis to treatment and care.
However, this global recognition has not resulted in country action.
Despite the UK having signed up to the global health strategy, along
with 193 other countries, access to the new treatments has been
restricted to 10 011 patients per year by NHS England. Current
mathematical models suggest that to reach the 2030 target of
elimination of hepatitis C as a public health threat, many more patients
will need to be treated. The lack of a national improvement framework
is also contrary to the realisation of the hepatitis strategy goal.
Public Health England 2015 report estimates that 214,000 individuals
were chronically infected with hepatitis C in the UK, with a majority of
infections occurring in marginalised groups. Deaths from hepatitis
related end stage liver disease have doubled over the last decade.
The new direct action antiviral regimens, with higher cure rates,
shorter therapies and less side effects, have the potential to
dramatically reduce morbidity and mortality. In this era of curative
treatments, the social and human cost of hepatitis is clearly
preventable and people should be receiving the full range of hepatitis
services they need, as stated in the April 2016 WHO guidelines for the
screening, care and treatment of persons with Chronic Hepatitis C
While the fight to secure access to treatment for all patients must
continue in order to reach the 2030 target of elimination, community
involvement and mobilisation throughout all stages of the care
continuum are also essential elements to success. Raising awareness
in the community, and among health-care workers and services
providers, to reduce stigma and educate about the benefits of testing
and prevention, remains key to hepatitis prevention and management.
Furthermore, the community can play a key role, from the
development of appropriate services, the support of HCV patients and
of their care team, to providing feedback on the services provided.
Success will only be achieved with the support of a broad mix of
people united across the HCV sector. By working together on the
development of an action plan and a set of achievable goals for the
next 6 months, Uniting Voices is hoping to improve community
engagement and collaboration and coordination of activities across
The key desirable goals highlighted during the 4 afternoon workshops
- co-infected, PWIDs, Prisons and South Asian populations - provided
the foundation for the overall Uniting Voices action plan. They have
been grouped under 3 key areas, spanning all 4 populations and
covering all steps of the HCV treatment cascade: testing, diagnosis,
treatment and care. A set of desirable goals is listed under each
It is hoped that this action plan will be used as a foundation around
which stakeholders and communities can identify actionable
opportunities to advance responses to HCV in the next 6 months and
beyond. These could be steps that simply complement existing
activities or new activities. Stakeholders are encouraged to identify:
specific actions they, or their organisation, could take to implement
these goals, partners they could engage in collaboration and key and
effective messages that would facilitate their realisation.
Successful implementation of these goals will require sustained
momentum and continued innovation. Regular meetings to monitor
progress and strategise about overcoming obstacles, capitalise on
new opportunities or emerging needs will be conducted.
Action plan for the next 6 months
1. Priority area 1: Educate providers and communities
Develop simple but innovative and aspirational messages that
can be use to unite voices around all activities, to gain media
support and increase organisations and communities
willingness to participate.
Conduct public education and awareness activities in
communities affected by HCV through film nights, stigma
workshops, webinars, radio broadcasts, social media and peer
support in 3 cities across the UK (London, Birmingham and
Publish a clear guide to hepatitis C that will speak to all groups,
including a call to action to increase participation and
Train champions who can go out in the community to raise
awareness (Prison champions, Asian Ladies group etc).
Involve health providers at all levels in the development and
implementation of this work-plan to raise their awareness of
opportunities for prevention, care and treatment, garner their
feedbacks and help them share information with their patients.
2. Priority area 2: Support communities and providers in the
prevention, care and treatment of viral hepatitis
Regular meetings with stakeholders to review the action plan
and identifies regional activities, priorities, gaps and
Seek new partnerships that might not be traditionally linked with
hepatitis-related activities (travel industry, religious leaders,
Collaborate locally with potential partners who will be able to
engage and reach the populations most impacted by HCV.
Advocate for the development of mobile clinics to bring the
clinic to the communities.
Provide physicians with national tools to facilitate equitable
access to treatment and develop guidance for physicians.
Identify gaps in provider training needs and materials.
3. Priority area 3: Build on existing strategies, tools, resources and
services to create new opportunities
Build on relationships with key people and organisations, in and
out of the HCV sector
Identify existing training resources to train champions, peers
Keep pushing for things that do not happen but should: e.g.
outreach is in the specification of the ODNs, including prison
outreach, put pressure on ODNs to deliver on their contract.
Develop and/or adapt culturally and linguistically relevant tools
and materials for populations at risk.
Initiate discussion with travel industry and medical kit
manufacturers to promote and distribute an affordable travel kit
Monday 4 July, 10.00 to 16.30
09.30 - 10.00 Registration
Royal Society of Medicine
10.00 - 10.20 Welcome
Bryan Teixeira, Meeting Chair,
Duncan Hamilton, Co-chair, ReShape Hep C lab
Rachel Halford, Hepatitis C Trust
Ben Collins, ReShape
10.20 - 12.10 The HCV Situation now and in the next six months
10.20 - 10.35 1. The UK HIV Treatment Cascade
Laura Waters, Mortimer Market
10.35 - 10.45 2. Moving towards a UK HCV treatment Cascade
Chloe Orkin, St Barts Hospital
10.45 - 10.50 Questions of clarification regarding the HCV treatment cascade
10.50 - 11.05 3. Treatment access across Europe
Raquel Peck, World Hepatitis Alliance
11.05 - 11.30 4. New treatments for hepatitis C: Impact on morbidity and
mortality – What could possibly go wrong?
Helen Harris, Public Health England
11.30 - 11.50 Discussion/Questions
11.50 - 12.00 5. Current HCV research gaps and challenges
Graham Cooke, Imperial College
12.00 - 12.10 6. Generics in the UK
Stuart Flanagan, St Barts Hospital
12.10 – 12.30 Preparation for small groups brainstorming session
Comments on key opportunities and challenges across the HCV
treatment cascade in the next six months
Charles Gore, Hepatitis C Trust
12.30 – 12.40 Guidance for small groups in the afternoon session
Bryan Teixeira and Duncan Hamilton
12.40 – 13.40 LUNCH
13.40 - 14.30 Key gaps and challenges and possible fixes across the HCV
treatment cascade in the next six months - in small groups
People who use injected drugs
14.30 - 14.45 BREAK
14.45 - 16.10 Plans for the next six months
14.45 - 15.30 1. Report back from small groups’ leads and recorders
What are your group’s key gaps and challenges for the next 6
months and what can wait?
What are your proposed fixes for these key gaps and
15.30 - 16.10 2. Open discussion
Consensus on key gaps and challenges to be addressed in
the next 6 months
16.10 - 16.30 Closing
Summary of action points
Bryan Teixeira & Duncan Hamilton
Ben is the convenor of ReShape, a London-based think tank to
reshape the response to HIV, HCV and related sexual and mental
health concerns for best sexual health and wellbeing. Ben is the
director of International HIV Partnerships (IHP) working with local
partners across Europe and the Middle East, especially low HIV
prevalence countries, for successful responses to HIV and HCV. He is
a member of EATG, serves on the EACS education committee and
the European Testing Week work group.
Ben has been HIV+ since 1982 and undetectable since 1998.
Graham Cooke is a clinical academic based in Infectious Diseases at
Imperial College. His practice and research is centred on HIV co-
infection. He leads work on the global burden of viral hepatitis, the
STOPHCV-1 trial (funded by MRC/NIHR) and point of care
diagnostics development (http://www.imperial.ac.uk/people/g.cooke)
Dr Stuart Flanagan is an NIHR Clinical Research Fellow in Viral
Hepatitis at Queen Mary's University of London while currently out of
training as a Specialist Registrar in HIV/GU Medicine at Royal London
Hospital. His research interests are BBV screening and Viral
Hepatitis, and he was part of the Going Viral team, a study on BBV
screening in Emergency Departments. Stuart is also an experienced
medical broadcaster for the BBC, as resident doctor on BBC Radio 1's
Surgery and CBBC's Newsround. He wrote and presented a BBC
Radio 4 documentary on Antimicrobial resistance "The Path Of Least
Resistance", available to listen to via iPlayer.
Charles Gore was diagnosed with hepatitis C in 1995 and cirrhosis in
1998 and in 2000 he set up The Hepatitis C Trust together with 3
friends who also had hepatitis C. He has worked extensively with
Government Departments, NICE and the National Health Service in
the UK, championing the patient perspective.
He was closely involved in the creation of the European Liver Patients
Association and was elected its first President from 2004 to 2006. In
2007 he established the World Hepatitis Alliance, of which he is
President, and was the driving force behind the WHO’s adoption of
World Hepatitis Day and the creation of WHO’s Global Hepatitis
Programme. The World Hepatitis Alliance is WHO’s official partner in
co-ordinating World Hepatitis Day each year.
Charles continues to work closely with WHO globally and regionally
and with individual Member States as they look to develop national
hepatitis strategies. Charles has sat on the WHO Guidelines
Development Groups (GDG) for both hepatitis B and hepatitis C and
treatment and is currently on the GDG for hepatitis B and C testing.
He is also a member of the WHO Director-General’s Strategic and
Technical Advisory Committee on Viral Hepatitis.
Rachel has over 20 years’ experience of working with people at high-
risk of viral hepatitis, and liver disease generally – the homeless,
prisoners, substance users and migrants. The past 12 years of which
have been in senior management roles within the voluntary/ NGO
sector. Passionate about equality and human rights, Rachel joined
The Hepatitis C Trust in 2015 as deputy CEO, before this she was
CEO of Women in Prison, a national UK campaigning organisation
that provided support and advocacy for women affected by the
criminal justice system. Diagnosed with Hepatitis C in 1998, Rachel
completed Interferon treatment in 2007 clearing the disease.
Duncan Hamilton is a passionate young activist and aspiring
psychology academic with strong interests in social well-being,
equality, environmentalism and HIV/HCV. His involvement in HCV is
an intimate one; only having been cured of the virus in 2015 through
interferon based treatment. Being positive about his HIV+ status, he
did not expect to find himself compelled to speak on stage about
stigma and treatment inequality. Recently, Duncan's main projects
are ReShape: HCV & LGBT+ Against Islamophobia.
Helen is a Clinical Scientist and Research Associate within the
Immunisation, Hepatitis & Blood Safety Department at Public Health
England’s National Infection Service in London.
Helen leads a programme of work on hepatitis C natural history and
disease burden, co -coordinating the work of the national HCV register
along with other national surveillance projects. Helen has published a
number of papers in the field of hepatitis C natural history and disease
burden. She also manages and edits the Hepatitis C in the UK report,
which summaries current knowledge about hepatitis C and reports on
the progress of UK Action Plans in tackling the infection.
Dr Orkin is Consultant and Honorary Reader in HIV Medicine at the
Royal London Hospital and runs an HIV & HIV/Hepatitis C research
unit. She has 70 peer-reviewed publications and co-authored 4British
HIV Association Guidelines: ARV & Hepatitis, Malignancy and Routine
Dr Orkin is External Examiner to the Diploma in HIV Medicine. She is
passionate about making HIV testing routine.
Raquel Peck is the CEO of the World Hepatitis Alliance (WHA), an
international umbrella organisation of more than 230 hepatitis groups
which she helped to establish in 2007 because viral hepatitis had
been inexplicably neglected for so long. This persistent neglect means
that there is an awful lot of catching up to do so she campaigns for a
higher profile and priority for these diseases, ensuring the voices of
patients are at the forefront of national and global health discussions.
Before being appointed CEO, Raquel worked as the International
Relations Director for the WHA and was part seconded to the World
Health Organization (WHO) after the Global Hepatitis Programme was
established to help the team in Geneva with their communications
strategy. Previously to this she was employed as a Public Relations
Coordinator for the only UK national charity dedicated to hepatitis C -
The Hepatitis C Trust.
Raquel's dedication to the fight against hepatitis contributed to the
adoption of two WHO resolutions on hepatitis as well as the adoption
of a robust Elimination Strategy for the diseases by 194 governments
in 2016. She is committed to seeing a world where hepatitis is no
longer a public health issue and will continue to campaign for the
ultimate goal of eliminating the epidemic.
Bryan Teixeira has over 30 years’ experience leading on community-
based sexual health and HIV programmes. More recently, he was the
CEO of NAZ (London) for 11 years and also served for 3 years on the
NGO Delegation at the UNAIDS Programme Coordinating Board
(Geneva). He has extensive experience in high-level, multi-
stakeholder meeting facilitation. Currently, Bryan works as a freelance
consultant and is the Chair of the Policy Working Group of the
European AIDS Treatment Group (EATG), Brussels.
Laura Waters is a GU/HIV consultant and the HIV & hepatitis lead at
the Mortimer Market Centre, London. She works predominantly in HIV
and viral hepatitis outpatient services. Laura previously worked in
clinical trials at Chelsea & Westminster and Brighton, gaining an MD
on ART simplification and switch and is currently principle or chief
investigator on several antiretroviral trials. She is chair of the BHIVA
treatment guidelines, vice-chair of the BHIVA conferences sub-
committee and a member of the BHIVA executive committee. She is
the previous treasurer and current chair of the BASHH HIV SIG,
a member of the 2015 PEP guidelines writing group and is chairing
the forthcoming update of the BHIVA/BASHH/FSRH SRH guidelines
for PLWH. She is on the HIV CRG including the Drugs subgroup and
the CRG PrEP subcommittee. She has published and presented
widely and is a regular columnist for Boyz magazine.
The Hepatitis C Trust
The Hepatitis C Trust is the national UK charity for hepatitis C. It is a
patient-led and patient-run organisation: most of its board, staff, and
volunteers either have hepatitis C, or have had it and cleared it after
treatment. The Trust firmly believes in patient-centred medicine and
we are committed to ensuring that all our actions are for the benefit of
patients, not for the benefit of other parties. We are also committed to
the principle of continually increasing the employment opportunities at
the Trust for people with hepatitis C, both as paid staff and as
The Trust’s ultimate goal is to close down because it is no longer
needed and to do so as soon as possible. It’s no surprise then that we
are whole-heartedly committed to the idea of eliminating hepatitis C in
the UK by 2030. Our strategy is based around the three strategic
pillars of better prevention, more diagnosis and treatment for all, and
we have a range of projects and services to deliver this.
ReShape is an independent London-based think tank formed to
respond to the ongoing crisis in sexual health. ReShape seeks to
promote personal happiness and social well-being by reinvigorating
our community responses to HIV, hepatitis C, and related sexual and
mental health concerns.
ReShape works in small study groups, called labs, and in partnership
with others, to focus on specific issues and projects of
community/public health interest. The labs identify gaps, needs and
possible responses, inform ReShape internal discussion, promote
activities (either inside ReShape or externally), and act as vehicles for
further action and evaluation. ReShape activities are borne out of the
Thank you to all who have helped develop the Uniting Voices for HCV
Thank you to our hosts, Joanna Skoczylas, One Wimpole Street and
the Royal Society of Medicine.
Thank you to all the presenters, group leads and recorders and to
Bryan Teixeira and Duncan Hamilton, today’s meeting chairs.
Thank you to the Hepatitis C Trust, especially Charles Gore and
Rachel Halford, for encouraging ReShape to join them on this effort.
Thank you to the ReShape HCV Lab, mostly people living with or
cured of HCV, who addressed the current HCV situation and its
problems, weighed proposals and then made a plan to push for HCV
elimination for all with greater community engagement that has
resulted in this initiative.
Thank you to the clinician / researchers who offered open support for
ReShape to move forward on this initiative including Mark Nelson,
Sanjay Bhagani and Babu Ranjababu.
Thank you to Alison Rodger and Anna Maria Geretti who played a
more important role than they might realise in developing this
initiative, by expressing their own personal frustration with policies and
prices that were keeping life saving drugs from their patients.
Thank you to all of the people who advised us as we developed the
initiative including Andrew Wilkinson, Hepatitis C Coalition; Andy
Ustianowski, North Manchester General Hospital ; Peter Moss, Chair,
NHS England Commissioning Advisory Group on Hepatitis C; Dee
Cunniffe and Claire Foreman from London Joint Working Group on
Substance Use and Hepatitis C; Chloe Orkin, Barts; Magdalena
Harris, London School of Hygiene and Tropical Medicine; Yusef Azad
and Susan Cole from NAT; Kam Gill, NHS England Health & Justice
Commissioning Support Manager, North Midlands; Ahmed
Elsharkawy, University Hospitals Birmingham; Sema Mandal, PHE;
and Oliver Standing, Adfam.
Thank you to representatives from Abbvie, BMS, Gilead, Janssen and
MSD for their counsel, especially Bahar Turkoglu.
Thank you to Gilead for financial support to launch this initiative.
We welcome further support from a broader group of funders.
for HCV elimination
4 July 2016, London