By Prof Felicia Marie Knaul, PhD Prof Felicia Marie Knaul, Prof Felicia Marie Knaul, Prof Paul E Farmer, MD*, Eric L Krakauer, MD*, Liliana De Lima, MHA, Afsan Bhadelia, PhD, Xiaoxiao Jiang Kwete, MD, Héctor Arreola-Ornelas, MSc, Prof Octavio Gómez-Dantés, MD, Natalia M Rodriguez, PhD, Prof George A O Alleyne, MD, Stephen R Connor, PhD, Prof David J Hunter, MBBS, Diederik Lohman, MA, Prof Lukas Radbruch, MD, María del Rocío Sáenz Madrigal, MD, Prof Rifat Atun, FRCP†, Prof Kathleen M Foley, MD†, Prof Julio Frenk, MD†, Prof Dean T Jamison, PhD†, M R Rajagopal, MD† on behalf of the Lancet Commission on Palliative Care and Pain Relief Study Group‡

In agonising, crippling pain from lung cancer, Mr S came to the palliative care service in Calicut, Kerala, from an adjoining district a couple of hours away by bus. His body language revealed the depth of the suffering.

We put Mr S on morphine, among other things. A couple of hours later, he surveyed himself with disbelief. He had neither hoped nor conceived of the possibility that this kind of relief was possible.

Mr S returned the next month. Yet, common tragedy befell patient and caregivers in the form of a stock-out of morphine.

The lack of global access to pain relief and palliative care throughout the life cycle constitutes a global crisis, and action to close this divide between rich and poor is a moral, health, and ethical imperative. The need for palliative care and pain relief has been largely ignored. Yet, palliative care and pain relief are essential elements of universal health coverage (UHC).

 Commission aims to (1) quantify the heavy burden of serious health-related suffering associated with a need for palliative care and pain relief; (2) identify and cost an essential package of palliative care and pain relief health services that would alleviate this burden; (3) measure the unmet need of an indispensable component of the package—off patent, oral, and injectable morphine; and (4) outline national and global health-systems strategies to expand access to palliative care and pain relief as an integral component of UHC while minimising the risk of diversion and non-medical use.

Click here to read the full article (restricted access).

Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report

This toolkit is intended to serve as a resource for organizations considering advocating for increased access to palliative care and pain relief as a human right within the United Nations human rights system. It clarifies what human rights are and how they are relevant to palliative care, as well as what the UN Human Rights System is. It also presents why and how to engage with the UN human rights system to advocate for increased availability and accessibility of quality palliative care and pain relief.

Palliative care seeks to relieve suffering and improve quality of life for those with life-limiting conditions. It is a holistic approach that improves quality of life for patients and their families by addressing the psychosocial, legal, and spiritual problems associated with life-threatening illness. Palliative care has been shown to be highly effective in managing pain and physical symptoms, and can improve adherence to medications. It is a core component of health care and of the human right to the highest attainable standard of health. It is also connected with a range of other rights and is increasingly recognized as a stand-alone right.

WHAT ARE HUMAN RIGHTS AND HOW ARE THEY RELEVANT TO PALLIATIVE CARE?

Human rights are the basic freedoms and entitlements that we all need in order to live with dignity. They have been secured in international law since the agreement of the Universal Declaration of Human Rights in 1948. Palliative care has been specifically recognized as a component of the right to the highest attainable standard of physical and mental health (the right to health). Similarly, access to pain relief to avoid severe pain and suffering is required under the right to be free from torture and other cruel, inhuman or degrading treatment or punishment.

Using the UN human rights system to advocate for access to palliative care and pain relief

By Joanne Neale, Annabel Bouteloup,, Mel Getty, Casandra Hogan, Paul Lennon, Martin Mc Cusker, John Strang

If you have ever struggled to recruit participants to your trial, discovered that the results of your survey are compromised by missing data, wondered why interviewees in a qualitative study did not grasp the point of your questions or been disappointed that your research findings were not embraced enthusiastically by the treatment sector, then this editorial—on conducting research in collaboration with people who use substances—might be for you.

Terminology used to describe the concept we are discussing is confusing. We refer here to ‘collaborative research’, meaning researchers working ‘with’ members of the group being studied throughout the research process. We distinguish this from: (i) participation in research (where members of the group studied are involved as research participants), (ii) engagement in research (where information about research is shared with members of the group studied) and (iii) user-led research (where those directing the research are members of the group studied; e.g. people in treatment researching that treatment for themselves) [1,2].

The term ‘collaborative research’ is often used interchangeably with ‘service user involvement in research’, ‘patient and public involvement in research’ and ‘community involvement in research’. Language is crucial, and the best form of words to use will depend upon context and political perspective [3]. For a treatment study, ‘patient involvement’ may seem appropriate, yet be offensive to those who do not consider themselves to be ‘sick’. ‘Service user’ may capture those in treatment, but exclude those who are not currently accessing services. Even the word ‘involvement’ is challenging, as it refers to a continuum of activities, e.g. advising, assisting and being equal partners in the research process [4,5].

Why we should conduct research in collaboration with people who use alcohol and other drugs

In the past decade, national and international interest in harm reduction in the MENA has increased. As a result, there has been an increase in research, improvements in disease surveillance, and establishment of significant health policies throughout the region.

• Scale up advocacy and harm reduction practices. Specifically in countries with a very high prevalence of HIV and large amount of PWIDs, like Egypt, Pakistan and Morocco.

• Improve data collection and surveillance by increasing research and/or collaboration among researchers in order to create usable sets of data. Data is most unreliable or unavailable in Yemen, UAE, Qatar, Iraq, Bahrain, Egypt, Libya, Saudi Arabia, Afghanistan, and Pakistan.

• Scale up surveillance of HCV, HBV, and tuberculosis among PWIDs. These diseases are highly prevalent in certain areas in the region and data is extremely limited

Harm reduction in MENA: where do we stand?

By Daniel Ciccarone, Jeff Ondocsin, Sarah G. Mars

The US is experiencing an unprecedented opioid overdose epidemic fostered in recent years by regional contamination of the heroin supply with the fentanyl family of synthetic opioids. Since 2011 opioid-related overdose deaths in the East Coast state of Massachusetts have more than tripled, with 75% of the 1374 deaths with an available toxicology positive for fentanyl. Fentanyl is 30–50X more potent than heroin and its presence makes heroin use more unpredictable. A rapid ethnographic assessment was undertaken to understand the perceptions and experiences of people who inject drugs sold as ‘heroin’ and to observe the drugs and their use.

Methods: A team of ethnographers conducted research in northeast Massachusetts and Nashua, New Hampshire in June 2016, performing (n = 38) qualitative interviews with persons who use heroin. Results:(1) The composition and appearance of heroin changed in the last four years;(2) heroin is cheaper and more widely available than before; and (3) heroin ‘types’ have proliferated with several products being sold as ‘heroin’. These consisted of two types of heroin (alone), fentanyl (alone), and heroin– fentanyl combinations. In the absence of available toxicological information on retail-level heroin, our research noted a hierarchy of fentanyl discernment methods, with embodied effects considered most reliable in determining fentanyl’s presence, followed by taste, solution appearance and powder color. This paper presents a new ‘heroin’ typology based on users’ reports.

Heroin uncertainties: Exploring users’ perceptions of fentanyl-adulterated and -substituted 'heroin'

This short document aims to provide a summary of the main issues that people engaged in developing drug policy, or in commissioning evaluations of drug policy, strategies and interventions, need to consider. There are many sources of more detailed information and guidance on conducting evaluations. This guide seeks not to duplicate or replace them but instead to act as an introduction, providing links to the wider literature and presenting the key issues for those managing rather than undertaking drug policy evaluations. Further reading and sources of more detailed information are provided at the end of this guide. There is also no single correct way to undertake an evaluation, and the choice of approach depends on many factors, including timing, objectives and the availability of resources. This publication is designed to assist people in choosing the best approach to suit their circumstances and to maximise the value of any evaluation.

There is a lot written about evaluation and sometimes the same terms are used to mean different things, so before starting it is important to clarify the definitions and concepts that the European Monitoring Centre for Drugs and Drug Addiction (EMCDDA) uses in this guide. The box below provides the definitions that we use in this guide for certain core concepts.

Evaluating drug policy: a seven-step guide to support the commissioning and managing of evaluations

In September 2017 CGL and Volteface convened a ‘round table’ to discuss responses to the growing threat posed by fentanyl and its analogues (often referred to as ‘fentalogues’ or ‘fentanyls’). Fentanyl and its analogues range from highly valued medicines to highly dangerous synthetic opioid drugs with little or no legitimate use in humans. The round table followed reports of at least 60 deaths linked to fentanyls in England and Wales in the previous eight months and CGL’s direct experience of managing outbreaks of fentanyl-related overdose deaths in two areas in England.

The round table had support from a wide range of stakeholders: commissioners, police; academics; drug service managers; toxicologists; doctors; nurses; public health specialists; drug policy experts; ‘experts by experience’; and other stakeholders from the NHS and Voluntary Sector.

The aims and objectives of the round table were to:

Explore the causes and consequences related to the rise in fentanyl-related deaths.

Inform discussion on existing and new service provision models.

Help shape CGL’s internal response to fentanyls.

Inform the development of a multi-agency approach to help prevent future deaths where fentanyls were suspected to be implicated. While the round table focussed on the fentanyls, it was acknowledged at the outset that any subsequent recommendations would likely build on existing guidance on the wider goal of reducing all drug-related deaths as detailed in the following documents:

Understanding and preventing drug-related deaths: The report of a national expert working group to investigate drug-related deaths in England (Public Health England, September 2016).

Reducing opioid-related deaths (Advisory Council on the Misuse of Drugs, December 2016).

Fentanyl Report

Problematic substance use (PSU) can negatively affect the outcomes of those involved with the criminal justice system: it can contribute to criminal behaviours, hinder progress within the justice system and create difficulties for those reintegrating into the community. This fact is concerning as approximately 75% of individuals arrive at Canadian federal institutions with a serious substance use problem (Correctional Service Canada [CSC], 2010). Further, those involved in the criminal justice system are more likely to have diverse physical and mental health conditions such as mental disorders, learning disabilities and infectious diseases (CSC, 2015a; CSC, 2010). These individuals are likely to have experienced substantial adverse events (e.g., witnessing family violence) and abuse, and to have a lower than average socioeconomic status (Kouyoumdjian, Schuler, Matheson, & Hwang, 2016), which varies based on diversity (e.g., Indigenous offenders).

Understanding how PSU plays a role in the success of an individual is key to improving the reintegration of those involved in the criminal justice system. PSU is a recognized criminogenic risk factor, meaning someone with a history of PSU is more likely to recidivate or commit future crimes (Harrison & Gfroerer, 1992). Addressing PSU and other risk factors can lead to a reduction in criminality, successful reintegration and a cost savings for corrections (Wooditch, Tang, & Taxman, 2014; Visher & MallikKane, 2007; CSC, 2009).

The primary goal of this environmental scan was to summarize evaluations of criminal justice interventions that aimed to reduce substance use and related behaviours, or recidivism or both. More specifically, the purpose of this environmental scan is:

To identify and summarize best practices in assessing and addressing PSU among those involved in the criminal justice system, with a focus on supporting the transition from the institution to the community; and

To develop a comprehensive picture of specialized initiatives or programs that have already been implemented in Canada.

The intended audience for the scan includes researchers in the field of criminology or substance use, practitioners involved in the criminal justice system or the treatment of PSU, and federal, provincial and territorial policy and decision makers responsible for health, justice or corrections.

Supporting reintegration in corrections by addressing problematic substance use

The UK government has published its 2017 drug strategy,12 and we are greatly concerned at the lack of focus on harm reduction—an evidence based response that protects people and saves lives—at a time when drug related deaths are the highest on record. The government acknowledges in the strategy that the rise in drug related deaths is dramatic.

Is the UK’s 2017 drug strategy fit for purpose?

The Rights Reporter Foundation (RRF) is a non-profit organisation founded by Hungarian activists to advocate for the human rights of vulnerable populations. We use the power of video for community mobilisation and advocacy campaigning. Our vision is of a society where policies affecting vulnerable communities are evidence-informed and respect human rights, as well as developed and implemented with the meaningful involvement of these communities. The main focus of our work is on people who use drugs, sex workers, and people who live with HIV, but we are glad to work with other stigmatised communities, such as LGBTQ people, ethnic minorities, migrants, refugees, and homeless people. Our mission is to educate the public about the role of evidence in policy formulation, to provide a voice for vulnerable communities, and to improve the advocacy efforts of NGOs by providing technical assistance and training. The RRF team is based in Budapest, and most of our activities focus on Europe, but we have cooperated with a number of NGOs beyond Europe, from New Zealand to Canada, from Mexico to Indonesia.

Rights Reporter Foundation – Annual Report 2016

Hepatitis C virus (HCV) is a major global public health concern, with approximately 114.9 (91.9-148.7) million people having antibodies to HCV, 3-4 million people newly infected each year and 350,000 deaths occurring annually. People who inject drugs (PWID) are the key at risk group in most high income countries and in most countries over half of PWID have been infected with HCV.

Evidence shows that injecting with needle/syringes previously used by someone else is the main risk factor for infection with HIV and HCV among PWID. Additional risks for HCV acquisition in this population include sharing drug preparation containers, filters, rinse water and backloading (a method of sharing drugs by transferring them from the needle of one syringe into the barrel of another). The provision of sterile injecting equipment through needle and syringe programmes (NSP) and enrolment in opioid substitution treatment (OST) are among the primary interventions for reducing HCV and HIV transmission among PWID. NSPs provide sterile needles/syringes and other injecting equipment to PWID, via fixed-sites, outreach, peer networks, vending machines, and pharmacies. By maximising the amount of sterile injecting equipment (including syringes, cookers, cottons) in circulation, the time infected equipment remains in circulation decreases and the proportion of unsafe injections or the need to share equipment to prepare drugs reduces. OST is prescribed to dependent opioid users to diminish the use and effects of illicitly acquired opioids and reduce the frequency of injection and exposure to unsafe injecting practices. The most commonly prescribed forms of OST are opiate agonist treatments - methadone maintenance therapy and buprenorphine maintenance treatment. NSPs and OST are often the first point of service contact for PWID and so they provide referrals and support to other social and welfare services.

There is good evidence that NSP and OST in combination reduce injecting risk behaviours and some evidence of an impact on HIV incidence. However, evidence for their impact on HCV incidence among PWID is limited.Recent reviews have estimated a moderate effect of NSPs in reducing HIV transmission by 48% (95% confidence interval (CI) 3-72%) and strong evidence for OST reducing HIV transmission by 54% (95% CI 33-68%). Previous evidence syntheses for use of NSPs has focussed primarily on HIV as the main outcome and, as a consequence, failed to include all the available evidence on HCV. Another review that measured the effect of NSP use did not include a metaanalysis due to heterogeneity in the measurement of NSP exposure and focussed on evidence from North America, limiting the generalisability of findings to othersettings including Europe. An analysis of pooled data examined the effect of NSP coverage on HCV incidence showed that high coverage of NSP (≥100% of injections with a sterile syringe) or receipt of OST either currently or within the past 6 months can each reduce HCV infection risk by 50%; and in combination by 80%. The small number of incident HCV cases meant that the efficacy estimate for 100% NSP among those not on OST was weak.

Needle syringe programmes and opiod substitution therary for preventing HCV transmission among people who inject drugs: findings from Cochrane Review and meta-analysis

North America is facing an epidemic of opioid addiction and opioid overdose with an unprecedented level of mortality. The crisis was spurred by a broad expansion of medical use of opioids, which began in the 1990s as a legitimate response to the under-treatment of pain, but which was soon exploited by the unethical behavior of pharmaceutical companies eager to increase their revenue. The rise in supply fed high levels of diversion among an economically stressed and vulnerable population. The present wave of opioid dependence differs from the heroin crises of the 1980s and 1990s, both in the sheer extent and in the social backgrounds of a large part of the affected populations. In Canada, which is second only in per capita opioid consumption to the United States, the rise in fatal overdoses is more linked to higher potency or ad-mixing of other drugs in areas where there was already a relatively high incidence of heroin use.

Initial reactions were to limit prescriptions and to introduce pills that were harder to manipulate. The reduced supply of prescription opioids, however, drove an important minority of people with addiction to less expensive and more accessible street heroin. Under what has become known as the “iron law of prohibition”, cheaper and more potent opioids—including fentanyl and its derivatives— increasingly appeared on the market. This has even further accelerated the rate of fatal overdoses.

Media and government attention has primarily focused on the supply through doctors. The fact that most addictions start with diverted supplies rather than among pain patients has been largely ignored. Policymakers have also failed to address the role of economic upheaval, unemployment, inequality, and other systemic sources of despair in increasing the risk for addiction and decreasing the odds of recovery. Health systems were completely unprepared and treatment is still dominated by abstinence-focused programs, where no regulatory standards have to be met. Furthermore, among other factors, prejudice against the most effective treatments for opioid addiction—opioid substitution therapy (OST)—has translated into lack of treatment for those in need. Opioid substitution therapy has proven effective in treating addictions to heroin and should be offered to those dependent on or addicted to prescription opioids.

Publications