The Hepatitis C Trust is the national charity for hepatitis C. Operational since 2001, our aim is to ensure no one dies from this preventable and treatable disease, and it is eliminated from the UK.

As a patient-led organisation we were set up by people with lived experience of hepatitis C, and our working model has always been to put patients and the patient experience at the centre of our work. Our peer-to-peer work is core to this model. Our main points of contact in the early days of our work were through our website and helpline, both of which were, and still are, run by peers with lived experience of hepatitis C - peers who offer advice and support by drawing on their own expertise and personal experiences. Today, while our website and helpline are still thriving, we offer an extensive peer-to-peer programme across the UK, with 140 staff and peer volunteers (52 staff and 88 volunteers).

Our peer support programme has evolved to meet the current needs of patients and the changing landscape of health service delivery throughout the UK. This has been fundamental to reaching those who face the most challenges accessing services.

In May 2016 the UK signed up to the World Health Organization (WHO) goal to eliminate hepatitis C by 2030. The Scottish Government subsequently stated the aim to eliminate hepatitis C six years before this target, while NHS England has set a goal of 2025.

This report puts forward the case for the unique and critical role of The Hepatitis C Trust's peer support work in overcoming the barriers necessary to effectively meet these targets. This work has contributed to successfully paving the way towards meeting elimination goals and will continue to do so in the future.

Leave no one behind: Engaging and empowering people in hepatitis C care and treatment through peer support

In September 2019, Transform Drug Policy Foundation and St George’s House convened a meeting of international experts on drug policy to discuss a scenario that many people feel may be edging closer to realisation: a world in which currently illicit drugs are legally regulated. This event provided an opportunity to discuss candidly the challenges and opportunities of this potential reality.

Transform is a leading global advocate for the legal regulation of drugs. However, the participants came from a range of backgrounds and brought different views on the question of drug policy reform. Participation did not imply, or require, agreement on the principle of legal regulation and the input of participants reflected this.

There was agreement that the so-called ‘War on Drugs’ has been waged at a high price in terms of fuelling crime and violence, drug-related health harms and deaths, undermining of institutions through corruption, and the exploitation and abuse of some of the world’s most vulnerable communities. This reflects wider shifts in attitudes towards drug policy. Global consensus on the goal of achieving ‘drug free society’ through the criminalisation of production, supply and possession has decisively fractured, with a growing number of jurisdictions experimenting with both the decriminalisation of possession, and more recently, the legal regulation of cannabis supply (including Canada, Uruguay, Mexico, and 11 US states, including California). Bolivia has also regulated the production of coca.

This consultation sought to grasp that moment and imagine a scenario where the legal regulation of drugs became a more global reality, for different drugs in different regions. The intention was not to anticipate the circumstances through which regulated markets might come to pass, or to rehearse well-trodden arguments for or against prohibition, but rather to imagine what consequences such an eventuality might have for everybody involved in, or impacted by, the global drugs market. It was an opportunity to envision that possible world, and for participants to freely and candidly discuss their responses.

This report summarises the discussions held over the two days of consultation and draws out consensus conclusions which we hope will be useful to advocates, policymakers, researchers and other parties interested in navigating a way forward. It was drafted by the independent rapporteur, Peder Clark, with editorial input from Transform Drug Policy Foundation.

Taking the points of consensus together, we propose seven principles as emerging from the discussion. Rather than focusing on what drug policy should be, these set out some key values on which reform should be based.

Challenges for a world where drugs are legally regulated

By the International Drug Policy Consortium and the Inspire Project

The Regional Dialogue organised by the International Drug Policy Consortium (IDPC) and the Inspire Project (administered by the Ministry of Justice, Thailand) was held in Chiangmai, Thailand, from 20 to 22 August 2019. The event gathered 35 participants from national drug agencies, correctional facilities, government ministries, national human rights bodies, UN agencies, NGOs and two formerly incarcerated women, mainly from Indonesia, the Philippines and Thailand, as well as invitees from Malaysia, the United Kingdom and the United States. The event was conducted in the format of a roundtable discussion in accordance with ‘Chatham House Rule’, whereby all statements recorded are not attributed to specific individuals.

Women, incarceration and drug policy: Regional dialogue in Southeast Asia

By Bryce Pardo, Beau Kilmer and Rosalie Liccardo Pacula, RAND Europe/RAND Drug Policy Research Center | EMCDDA

This report provides an overview of the changes in cannabis policies in the Americas and the evidence emerging from evaluations of their impact. Highlighting the challenges in monitoring and evaluating regulatory changes in the drugs field, it will be of particular interest to those involved in planning or evaluating any modifications to cannabis regulation.

Monitoring and evaluating changes in cannabis policies: Insights from the Americas

The U.S. is in the throes of a deadly overdose crisis that claimed almost 70,000 lives in 2018. Of those, around 30,000 deaths involved synthetic opioids like fentanyl,a Policymakers have responded to the overdose crisis with a rhetorical emphasis on “treatment instead of incarceration,” leading journalists to comment that we are in the midst of a “gentler war on drugs.” However, despite a change in discourse, draconian policies have persisted and in many cases been expanded. This is exemplified by many lawmakers’ reaction to fentanyl and other analog drugs, both on the state and federal level.

Since 2011, 45 states have proposed legislation to increase penalties for fentanyl while 39 states and Washington DC have passed or enacted such legislation. At this moment, some members of Congress are working to codify harsher penalties by placing fentanyl analogs permanently into Schedule 1 in both the Senate and the House with proposed legislation like the Stopping Overdoses of Fentanyl Analogues Act of 2019 (SOFA) and the FIGHT Act. In his annual State of the State 2020 address this month, New York’s Governor Cuomo proposed banning fentanyl analogs and expanding access to medication assisted treatment in the very same sentence. Legislators have dusted off the drug war playbook and proposed a variety of new punitive measures including new mandatory minimum sentences, homicide charges, involuntary commitment, expanded powers for prosecutors and more. These efforts repeat the mistakes that epitomize the failed war on drugs, while undermining efforts to reform our criminal justice system and pursue a public health approach to drug use. Indeed, such proposals risk compounding the overdose crisis.

Punitive approaches to fentanyl are particularly disturbing because they run counter to recent policy shifts that have been largely bipartisan in nature. One recent policy shift is a growing promotion of public health approaches to drug use. There is mounting support for a number of policies and interventions – such as increasing access to voluntary, medication-assisted treatment and naloxoneb – as more effective responses to the current overdose crisis than the revolving door of jail or prison. Another notable policy shift is the long-overdue recognition that decades of harsh and racially-biased drug enforcement have had devastating consequences on individuals and communities, while wasting billions of taxpayer dollars. A recent analysis of federal fentanyl sentencing revealed that 75% of all individuals sentenced for fentanyl trafficking were people of color, suggesting that fentanyl enforcement already mirrors other disparate drug enforcement.

The criminal justice reform movement has made tremendous progress on reducing drug sentences at the local, state and federal levels. The trend toward tougher penalties for fentanyl presents a threat to the reform movement, undercutting initiatives to reduce mass criminalization and incarceration. To date, none of the states that enacted harsher penalties for fentanyl, nor the federal government, have demonstrated a reduction in fentanyl-involved deaths because of these new laws.

In this context, the criminal justice reform movement must do more to combat punitive proposals, putting as much energy into challenging the exceptionalism around fentanyl as other efforts to reduce sentences.

This paper aims to shine a light on the danger that harsh fentanyl penalties present to the criminal justice reform movement and efforts to end the war on drugs:

Harsh penalties for fentanyl are detrimental to public health and exacerbate the overdose crisis.

People who use and sell drugs are often unaware of the composition and potency of their drugs and have little control over the quality of product available.

Fentanyl in heroin is increasingly the “new norm” in many parts of the country.

Lawmakers may believe they are addressing an issue that may pass with time, but fentanyl is no passing trend.

There are already harsh penalties in effect for fentanyl and they disproportionately target communities of color.

Differentiating between people who use and sell drugs is not possible.

The most effective ways to address the fentanyl crisis are evidence-based public health and harm reduction approaches. We recommend that policy makers and advocates focus their efforts to promote the following:

Expand and protect 911 Good Samaritan laws,

Expand community-based naloxone access and distribution,

Improve drug checking, surveillance and data collection and make them more widely accessible,

Authorize supervised consumption sites (SCS)c on the state and local level,

Fund pilot injectable opioid treatment as an option for some people with chronic heroin use disorder.

For lawmakers to respond meaningfully to fentanyl, public health solutions are a much more viable and affordable approach without additional harsh penalties and further criminalization. The criminalization of drug use only drives people who use drugs into more dangerous situations. This makes it less likely that they will seek support; rather it makes it more likely that they will suffer a fatal overdose.

Advocates have made considerable gains in promoting criminal justice reforms to address the many collateral consequences of our failed war on drugs. While the criminal justice reform, treatment and harm reduction movements have many victories to celebrate, there is a real risk that the proliferation of harsh penalties for fentanyl will lead to an increase in the prison population, subverting the fight to end mass incarceration.

Criminal justice reform in the fentanyl era: One step forward, two steps back

Harm Reduction International (HRI), the International Drug Policy Consortium (IDPC), the International Network of People who Use Drugs (INPUD), NoBox Philippines, and the World Coalition Against the Death Penalty welcome the opportunity to submit information to the Human Rights Committee ahead of the adoption of the List of Issues for the review of the Philippines.

This submission will assess the impact of the Philippines’ drug policy on the enjoyment of civil and political rights, with a focus on developments since the intensification of the anti-drug campaign in July 2016; and provide suggestions for issues to be raised with the government of the Philippines. In particular, this submission will provide information on:

Arbitrary deprivation of life in the context of anti-drug operations (Article 6);

Failure to protect the life of people who use drugs (Articles 6 and 26);

Attempts at reinstating the death penalty, specifically for drug offences (Article 6);

Torture and ill-treatment in detention (Articles 7 and 10);

Compulsory drug detention and treatment (Articles 7 and 9);

Proportionality of the criminal justice response to drugs and prohibition of arbitrary arrest and detention (Articles 9 and 14);

Arbitrary interference with the right to privacy (Article 17);

Shrinking civil society space: targeting of human rights defenders and drug user activists (Articles 19 and 21).

Submission to the United Nations Human Rights Committee ahead of the fifth periodic review of the Philippines

This publication was part of a two-part series on overdose prevention. Click here to access 'Overdose prevention - New technology-based solutions'.

By Graham Shaw & Jean-Paul Grund / Stop Overdose Now (SON)

Fatal and non-fatal overdoses related to opiates use are on the rise in many parts of the world, with North America, Australia and Central Asia being the most affected regions. In Europe as well opioid-related overdose deaths show a continuous increase, at least since 2013. Naloxone is the centrepiece of the response to opioid overdose. This opioid antagonist medication rapidly and completely reverses the effects of opioids and thus, when timely administered, prevents opiate overdose death. Globally, about half of the countries (101 out of 196) had registered injectable naloxone by September 2017, a requirement for the drug to be legally available in the country and for licenses to be issued for the manufacture, importation and/or distribution of the drug. In Europe, by the same time, 80% of the countries (37 out of 45) had Naloxone registered by national authorities. Lack of legislation and registration can hinder Naloxone access. Policymakers and advocates can count with several guidelines to support them in drafting required policies and standard operating procedures to allow the drug’s manufacture, importation and/or distribution. Another barrier to Naloxone access is the costs. Generic and domestically produced naloxone, as well as country-collaboration for bulk purchase can help addressing this. Finally, fostering Good Samaritan Laws, positive media, community education and the meaningful involvement of people who use drugs can help broadening naloxone access, as it fights stigma and discrimination.

Good practice interventions to respond to opioid overdoses include naloxone take-home programs, peer-to-peer naloxone programs, prison and treatment pre-release programmes, and broader interventions such as drug consumption rooms and safe injecting facilities, heroin assisted treatment, and drug checking services (including fentanyl test stripes). These interventions demonstrate that Naloxone and overdose prevention must move from mainly hospital and clinical settings into the hands of people in the community (street users, carers, agency staff) to improve access and timely response. Peers can be a great asset both to improve Naloxone availability and to provide training to various actors in how to administer the drug. Training prison staff and engaging prisoners who use opiates with local health services in the weeks following their release also helps preventing overdose deaths in this population.

Overdose prevention - Status quo and challenges

This publication was part of a two-part series on overdose prevention. Click here to access 'Overdose prevention - Status quo and challenges'.

By Jean-Paul Grund & Graham Shaw / Stop Overdose Now (SON)

An innovative way of preventing opiate overdose deaths is through emerging online technologies. Online user forums as well as informative websites and mobile phone apps, are an asset in improving access to both information and naloxone itself. Web-based interventions are easily accessible from non-urban areas and across the globe, and help to circumvent stigma, punitive drug policies and harsh law enforcement. Besides, as the growing online drug market challenges traditional harm reduction service provision such as outreach work, innovative projects are using the same online channels to provide harm reduction services. High quality information websites and instructive apps increase access to information on overdose prevention, preparing PWUD and those near to them to properly respond in the event of an opioid overdose. Overall, the use of technology in support of the response to opioid overdose falls into two overlapping categories, namely communitybased networking of the response to overdose emergencies; and monitoring and research in support of risk management and response readiness. Among others, apps may offer geobased information on naloxone availability and harm reduction services to PWUD (connecting people in need of naloxone/services with those who can provide it). Other apps concentrate on post event incident reporting and monitoring of overdose only. These can potentially generate important data for overdose prevention projects and policy planning.

Innovation, however, does not come without challenges. Not all people in need possess mobile phones, and there are limits to current location technology to provide accurate geospatial location. Besides, safety, privacy and data security measures must be adapted to safeguard app users from law enforcement, hackers, and potential malicious behaviour by other app users. Finally, assuring uptake and acceptance by the PWUD community is essential, as well as securing funding to (further) develop tech-savvy initiatives to prevent overdose deaths.

Overdose prevention - New technology-based solutions

Many people who inject and use drugs experience negative interactions with the police and, as a result, are over represented in criminal justice systems, prisons and compulsory drug treatment centres. This happens because in many countries, the production, trafficking and use of some drugs is illegal and police are tasked with enforcing the law. Harm reduction programmes at their core recognize that drug use has implications for individual and public health, and these harms must be reduced as a fundamental step towards ensuring the human right to health. Despite these policy and programmatic shifts, people who use and inject drugs frequently report being targeted and searched by police, as well as experiencing harassment, humiliation, extortion, violence and arbitrary detention at the hands of the police.

In many countries, research has documented that these types of police practices increase vulnerability of HIV acquisition and onwards transmission, and are not conducive to access and retention in care for HIV and other related health services for people who use and inject drugs. In recognition of this, the World Health Organization recommends the decriminalization of drug use and possession for personal use as a critical enabler for an effective HIV response. The police have a central role in creating supportive environments where harm reduction programmes can exist and that, by fulfilling this role and becoming a partner in harm reduction, both the police and the broader communities in which they serve benefit immeasurably.

Law enforcement must work in partnership with the community, including people who use drugs, in pursuit of creating a rights- and health-affirming environment. While protecting public health is not the primary function of the police, operating within a human rights framework that improve health and well-being is part of progressive and effective policing practice.

Reducing harm: Police as partners in preventing HIV, promoting public health and protecting the rights of people who use drugs

The 45th meeting of the Programme Coordinating Board (PCB) took place in calmer waters than the previous meetings of the board. The venue was, as usual, the Executive Boardroom of the World Health Organization (WHO) in Geneva, Switzerland and the meeting was held from December 10 -12, 2019. It was the first meeting of the newly appointed third UNAIDS Executive Director in the history of the Joint Programme, and the first woman to hold that position, Ms. Winnie Byanyima from Uganda. The meeting was chaired by Ms. Li Cui from China.

Winnie’s report to the board was generally well-received, including by the NGO Delegation. Yet, as the current UNAIDS Strategy nears its expiration date in 2021, her report initiated a debate among members of the board about a possible next UNAIDS Strategy and the process involved. This discussion was closely linked with the agenda item that reflected on the report of the Joint Inspection Unit (JIU).

Just as in previous years, the first two days of the PCB discussed the report by the NGO Delegation and several other more policy and programme-driven items such as prevention, barriers to funding of community-led responses, and the Global Partnership for action to eliminate all forms of HIV-related stigma and discrimination. The third day of the meeting focused on the Thematic segment to inform the members of the PCB about possible actions to reduce the impact of AIDS on children and youth.

The PCB NGO delegation's communique: 45th Programme Coordinating Board meeting

This report enriches the information and knowledge base of harm reduction interventions in Europe from the viewpoint of civil society organisations (CSOs) that directly work for, and with, people who use drugs. This approach is a necessary, and useful, contribution to the development of drug policy in the region and C-EHRN plans to repeat this reporting on an annual basis to identify developments, changes and trends over time.

The report consists of four parts. The introduction provides background information concerning the development of the questionnaire, the data collection process, methodology used, and the nature of the data. Chapters 2-5 report on civil society involvement in drug policy and related decision-making processes as well as on hepatitis C and drug overdose prevention and management services together with the use of new drugs and new patterns of consumption. Each chapter begins with a short summary of the main results and ends by discussing conclusions and policy implications.

Most CSOs responding to the C-EHRN survey are experienced in contributing to data collection and, crucially, have close contact with many important actors in the field and have access to timely and quality information that complements the data collection mechanisms already in place. Consequently, this report reinforces the added value of the role played by CSOs in the collection of data that can inform harm reduction practice. In most countries, civil society involvement is, to some extent, enabled through dialogue and/ or information exchange but, often, the impact is regarded as unbalanced and ineffective. Permanent and formalised structures that ensure dialogue between civil society and government representatives are beneficial for such civil society involvement as structures allow for cooperation on a regular basis and oversee both the formulation of policy and its implementation. Formalised structures, however, do not safeguard meaningful involvement of civil society if they do not lead to accountable outcomes.

C-EHRN Monitoring shows that people who inject drugs (PWID) are still not allowed access to treatment of the hepatitis C virus (HCV) in 10 European countries. Although 23 countries have guidelines that include specific HCV management for PWID, many C-EHRN respondents are somewhat pessimistic about the impact of such guidelines on improving access to the HCV cascade-of-care in their country, especially to good practice, integrated, test-and-treat services at the same site. HCV testing and treatment at pharmacies remains very rare. On a more positive note, 23 European countries reported PWID organisations working actively to increase political awareness concerning HCV interventions. Compared to 2018, more attention has been paid over the past year to HCV awareness campaigns (in 15 countries), to testing at the service providers’ own premises (in 18 countries), and to treatment at the service providers own site (in 15 countries). The main barriers to address HCV among PWID include a lack of funding, knowledge, recognition, political support and skilful staff as well as weakness of civil society organisations and legal barriers.

In 15 countries of the region, the government monitors the number/proportion of people who progress through each stage of the HCV cascade-ofcare at the national level, with monitoring at the regional or local level also performed in 12 countries whereas monitoring is not performed at any level in a further 9 countries. There are still big differences within Europe as to where and how PWID can undertake a HCV test. This means PWID are in an unequal position in different European countries, regions and cities. Rapid HCV testing is available to prisoners in 21 countries.

Treatment of HCV using direct acting antivirals (DAAs) is available in all countries of the region except North Macedonia. However, 10 of 34 countries still place restrictions on access to DAA’s for those people who are active drug users. However, if access to DAA treatment is achieved, the costs are reimbursable by health insurance or through the public health service in all countries except the United Kingdom.

Consequently, to reduce the HCV-related disease burden among PWID and achieve the 2030 elimination goals as set out in the WHO Global Health Sector Strategy on Hepatitis, a radical change in the HCV response is needed in many European countries. National treatment guidelines that specifically address recommendations for treating PWID, guaranteed access by PWID to DAA treatment, improvements in the continuum-of-care and introduction of one-stop HCV testing and treatment services - including such services delivered by harm reduction organisations - needs to be further developed and adopted by all government and civil society stakeholders.

A further key contribution by civil society is collecting data on the context of drug-related overdose events and interventions at a local level, feeding into already existing data and reports. Only 5 countries reported separate overdose prevention strategies or action plans. Much improvement is needed to be able to adequately respond to overdoses in Europe. Evidence demonstrates that a range of measures – including drug consumption rooms (DCR), take-home naloxone (THN) programmes in the community, and naloxone distribution before release from prison - can reduce opioid and other drug-related overdose deaths. However, C-EHRN Monitoring shows a mixed picture of policies and measures across Europe. There is a significant disparity in how, and by whom, such overdose data is collected which can ultimately influence what is recorded as a drug-related death. To address this, the EMCDDA should encourage the respective national health authorities, their own Reitox Network, as well as others who collect such data, to collaborate more with national harm reduction networks and experts in their field of work. Furthermore, due to the uneven status of naloxone – the safe and simple response to an opioid overdose as recommended by WHO – political authorities are called upon to take appropriate legal initiatives to ensure, without delay, that naloxone is available free of charge and without prescription in pharmacies for people who use drugs; experience from Italy can be the basis for this action. In addition, to obtain a real overview of the number of doses of naloxone administered and data on the successful use of naloxone, a national reference point should be established to collect and analyse this and other data.

In general terms, the results of C-EHRN Monitoring correspond with what we know from other sources concerning new drug trends. In addition, the process of data collection as undertaken by C-EHRN Focal Points in each country has the potential of generating additional information and at a quicker pace than other methods, bringing added, qualitative value to this sector.

A review of the approach used by C-EHRN Monitoring to collect such information suggests that focus groups held several times each year would be more effective than a questionnaire as it would lead to consensus-based data. Also, a focus on drug trends, including new drugs, is preferable rather than the emergence of specific drugs. In addition, the focus should be at the city/urban level, rather than national, as this will likely provide higher quality data, and a reduction in the number of questions is recommended.

Civil society monitoring of harm reduction in Europe, 2019

This collection of case studies is an attempt by experts of the Eurasian Harm Reduction Association (EHRA) to introduce and systematise various models of alternative financing that have been implemented successfully in the current environment.

In recent years, many non-profit organisations (NPO’s) in the countries of Central and Eastern Europe and Central Asia (CEECA) have witnessed significant changes in the structure of their revenues; the volume of grant financing provided by charitable foundations has been gradually decreasing. Such a development has forced NPO’s to search for alternative sources of funding for their programmes and projects. At present, NPO’s are moving towards significantly more complex financing models, such as crowdfunding, involvement of businesses in charitable projects, and the establishment of social enterprises, amongst others. These activities are reaching a new level and becoming more mature and professional; they are now taking into consideration the interests and particularities of all stakeholders involved in the process.

This publication offers a description of various alternative financing mechanisms which NPO’s can use in their search for available financial resources, specifically the forms that such mechanisms could take; how the work should be built from the very beginning; what the motives of participating partners in such initiatives could be; and identification of the secrets of success and the possible risks, amongst other issues. This collection is prefaced with an analytical article offering a typology of alternative financing models for NPO’s. Furthermore, specific case studies are provided as illustrations of such models; the examples provided include both large and small scale projects.

Different outcomes are presented through the examples given of NPO’s utilising alternative financing mechanisms. Certain organisations are successful in their implementation of one or other of the listed approaches, whilst others may have not had such an experience but still continue to be active in this sphere while learning from their mistakes; others may just be starting their journeys and are only considering additional opportunities.

This collection is intended to provide help for both experienced and beginner NPO’s and could be of use to the leaders of such organisations, fundraisers and other specialists working with NPO’s. It may also be of interest to specialists of state bodies, business structures and also to everyone who is interested in building long term relations with NPO’s and who are willing to enhance their competencies in the fields of strategic partnership and fundraising.

A number of semi-structured online interviews with representatives of NPO’s working with vulnerable groups and implementing various alternative financing practices were conducted to collect the data introduced in this publication. Most respondents were leaders of such organisations.

In total, 20 NPO representatives from 15 countries of Western, Eastern and Southern Europe took part in the survey, including Ukraine, Georgia, the Russian Federation, Moldova, Poland, Romania, Bulgaria, Slovenia, Serbia, Armenia, Croatia, the Netherlands, Switzerland, England, and Scotland.

It is hoped that many public organisations will be able to use the experiences presented here to obtain alternative financing for the implementation of their own projects.

Publications