Afsan Bhadelia

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

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

Closing the divide: the Harvard Global Equity Initiative–Lancet Commission on global access to pain control and palliative care

www.thelancet.com Published online March 9, 2015 http://dx.doi.org/10.1016/S0140-6736(15)60289-6 1 Access to palliative care—the prevention and relief of physical, emotional, social, or spiritual suff ering associated with any chronic or life-threatening illness, beginning from the time of diagnosis—is at the core of the right to health and is fundamental to health care. Alleviation of all forms of pain and suff ering, both acute and chronic, is an ethical duty of societies and health professionals. Yet most of the world’s population has little or no access to pain control and palliative care, forcing patients and families to endure a tremendous burden of avoidable suff ering. The absence of palliative care also undermines eff orts to improve human wellbeing, and impoverishes a host of interventions intended to reduce human suff ering and strengthen health systems. The need for palliative care is ubiquitous and will grow with population ageing and as chronic disease becomes increasingly common. In 2010, non-communicable diseases (NCDs) accounted for 54% of the global disease burden, compared with 43% in 1990. More than twothirds of deaths are attributable to NCDs, and 80% of these deaths are in low-income and middle-income countries (LMICs). Furthermore, palliative care is essential not only near the end of life, but also in combination with curative or disease-modifying treatment from the time of diagnosis. Infectious diseases such as HIV/AIDS, multidrug-resistant tuberculosis, and ebola, and complex humanitarian emergencies and severe injuries, also cause suff ering that requires pain control and palliative care for patients and their families. Access to pain control and palliative care is currently grossly inequitable. Most untreated pain and suff ering happens in LMICs, and data for opioid access poignantly show this reality. High-income countries account for less than 15% of the world’s population and 94% of global morphine consumption. In the poorest 10% of the world’s countries, a patient with pain who dies from AIDS or cancer has access to on average 200 mg of oral morphine (or equivalents); in the richest 10% of countries, the average morphine consumption per death in pain from AIDS or cancer is 99 000 mg. To remedy the neglect and marginalisation of palliative care, health systems and medicine need to be redefi ned. Global health is marked by a dearth of interest, indicators, investment, and interventions to provide for safe, secure, and dignifi ed death, and palliation of pain and suff ering throughout the life course. People highly value the avoidance of pain and suff ering, yet priority-setting methods that guide health-investment decisions focus almost exclusively on extending life and increasing productivity. In clinical medicine, the obsession with extension of life and treatment of disease, at any pecuniary or emotional cost, displaces adequate attention to human dignity and quality of life. Terminal illness is stigmatised, and dying patients are too often expelled or excluded from health-care systems. Universal health coverage—the widely accepted quest of health systems—must include access to pain control and palliative care with fi nancial protection as a fundamental goal. However, health entitlements and essential packages typically do not include drugs and other interventions to alleviate pain and suff ering. As a result, many opportunities to provide access to palliative care through health-system reform and national insurance have been missed. In LMICs, regulations hampering opioid accessibility, combined with the scarcity of trained doctors and other health professionals, has stymied delivery of pain treatment and palliative care. But these barriers are not insurmountable. Integration of pain control and palliative care into health provision is a quintessential example of a diagonal strategy that can strengthen health systems through positive externalities for disciplines as diverse as surgery and social work. Novel initiatives from developing regions provide valuable lessons to share and scale-up. Comprehensive pain control and palliative care are embedded into the Costa Rican health system. Several countries including Albania, Colombia, Mexico, India, and Rwanda have implemented palliative-care laws or national plans. Uganda and Nepal, despite high levels of poverty, are establishing national oral morphine-production programmes. Innovative models for training of clinicians at all levels of the health-care system in palliative care have been piloted in several LMICs. Furthermore, recent advances in the global Closing the divide: the Harvard Global Equity Initiative–Lancet Commission on global access to pain control and palliative care

Meeting the Emerging Challenge of Breast and Cervical Cancer in Low- and Middle-Income Countries

Cancer, particularly when it affects women and reproductive health, epitomizes the complexities and inequities of the epidemiological challenge faced by low‐ and middle‐income countries. Women in resource‐poor settings face a double cancer burden: the backlog of preventable cancer, and the emerging challenge of cancers that cannot be prevented but whose impact could be dramatically reduced through early detection and treatment. Disparities in cancer incidence, mortality, and other health and non‐health outcomes are exacerbated by gender inequity and compounded by discrimination and stigma. The combination of these barriers implies a multiplicative challenge for women who face cancer, particularly when the disease is associated with reproduction. The horizons of maternal and reproductive health should extend to include the life cycle of healthy changes and illness that are embodied in longer life for women. Numerous opportunities exist to strengthen health systems through sexual and reproductive and women and health platforms and better meet the challenge of cancer.

Women's health beyond reproduction: meeting the challenges

Women’s health and noncommunicable diseases are both generating increasing interest within the international community. Over the past two years major action platforms have been launched in these areas, including the United Nations’ Global Strategy for Women’s and Children’s Health and the Political Declaration of the High-level Meeting of the General Assembly on the Prevention and Control of Non-communicable Diseases. However, the intersection and relationships between the two areas have not been adequately explored and, as a result, the health needs of women beyond reproduction remain largely unaddressed.

Report from a symposium on catalyzing primary and secondary prevention of cancer in India.

AbstractPurposeOral, breast, and cervical cancers are amenable to early detection and account for a third of India’s cancer burden. We convened a symposium of diverse stakeholders to identify gaps in evidence, policy, and advocacy for the primary and secondary prevention of these cancers and recommendations to accelerate these efforts. MethodsIndian and global experts from government, academia, private sector (health care, media), donor organizations, and civil society (including cancer survivors and patient advocates) presented and discussed challenges and solutions related to strategic communication and implementation of prevention, early detection, and treatment linkages.ResultsInnovative approaches to implementing and scaling up primary and secondary prevention were discussed using examples from India and elsewhere in the world. Participants also reflected on existing global guidelines and national cancer prevention policies and experiences.ConclusionsSymposium participants proposed implementation-focused research, advocacy, and policy/program priorities to strengthen primary and secondary prevention efforts in India to address the burden of oral, breast, and cervical cancers and improve survival.

Improving pathology for better cancer care and control in countries of low and middle income

In their Correspondence (Feb 25, p 712),1 Drucilla Roberts and colleagues highlight a substantial barrier to expanding access to cancer care and control in resource-constrained settings: the absence of adequate pathology. This gap can render largely useless otherwise successful efforts to expand access. Indeed, improving cancer diagnosis and pathology expertise is recommended in the report of the Global Task Force on Expanded Access to Cancer Care and Control,2 discussed in an Editorial.

Closing the pain divide: the quest for effective universal health coverage

Abstract Background More than 5·5 billion people, most in low-income and middle-income income countries (LMICs), live with limited or no access to pain control and palliative care. This inequality—the pain divide—is a grave injustice. As a result, many patients around the world, especially those with chronic diseases, needlessly suffer pain. The Harvard Global Equity Initiative–Lancet Commission on Global Access to Pain Control and Palliative Care (GAPCPC) aims to address the pain divide through the promotion of effective universal health coverage (UHC) and by harnessing existing platforms for health systems strengthening. Methods The Commission has convened experts from the health systems, global health, and palliative care communities. It merges efforts between research, policy, and implementation partners at the global and national levels for policy-oriented research and evidence-based policy-making. The Commission is reviewing country cases of innovative reform and policy-making on palliative care in Mexico, Colombia, and Costa Rica, to identify the greatest opportunities and challenges for UHC. Findings The Commission noted examples of reforms in legislature, education, and health systems to improve access to pain relief in Mexico, Colombia, and Costa Rica. Such reforms include the development of palliative care curricula for undergraduate and post-graduate courses to expand protocols for prescription of opioids for pain control. The Commission focuses on the impact of contextual and enabling factors to producing equitable, effective, and affordable pain control and palliative care services in various LMICs, including these three Latin American countries. Further, it examines the policy, regulatory, and training barriers to achieving effective UHC and strategies for future reform. It aims to enhance knowledge exchange between experts and policy-makers in LMICs on pain policy, as well as on the training of different cadres of the health workforce and models of service delivery to meet palliative care needs across diseases, and throughout the life course. Interpretation Policy-makers require guidelines for action and effective planning at the country level. A systematic guide and tool for drafting national pain and palliative care plans in LMICs is missing. Documenting the process and the development of guiding tools based on country cases of effective strategies can help other LMICs along their trajectories in making pain control and palliative care for all a reality. Funding The HGEI-Lancet Commission on GAPCPC is primarily supported by Harvard University.

Advancing access and equity: the vision of a new generation in cancer control

172 www.thelancet.com/oncology Vol 18 February 2017 As the next generation of cancer advocates and leaders, we inherit a legacy that is in many ways, remarkable. The past few decades have seen rapid and unparalleled progress in cancer control. Investigative breakthroughs, such as those in cancer genomics and immunology, have transformed our understanding of the disease. New discoveries in cancer prevention have mitigated risk factors, and improvements in surgical techniques, radiotherapy technologies, and systemic agents have led to substantial improvements in cancer cure rates— an absolute survival increase of roughly 20% during the past three decades. This progress has been impressive, but its distribution has not been equitable. Signifi cant disparities in cancer outcomes persist between and within countries resulting in a so-called cancer divide, a deplorable situation compounded by the fact that the greatest burden of cancer aff ects low-and-middle-income countries (LMICs). It is the call of our generation to close this cancer divide, especially in view of the rapid acceleration of the global burden of cancer and its consequent strain on social, economic, and health systems. The challenges are many. Inadequate prioritisation of eff ective prevention strategies exacerbates the global burden. Early detection is complicated by limited primary care and pathology capacity; in many LMICs, even the most basic diagnostic and treatment services are inaccessible or unaff ordable. Supportive and palliative care is absent in most of the world, a startling inequity that permits the needless suff ering Advancing access and equity: the vision of a new generation in cancer control cost of signifi cant fi nancial strain, inadequate palliative care, and unmanaged existential suff ering, it would seem so. The question arises as to how physicians can better manage the care of patients with advanced cancer in an age of unlimited access to knowledge. It is crucial that from the very outset hope is balanced against realism. In this, physicians, patient advocates, the media, government agencies, and the pharmaceutical industry all have parts to play in the provision of honest, measured information for patients and their families. Realistically, we need to accept that many of our patients will seek a second opinion (if not more) online, and be prepared to engage with them in interpreting the results of their enquiries. And yes, we should celebrate the victories with our patients. But we should also temper their expectations. As we inform our patients that their time may be limited, we should ask—“Is there anything you want or need to do that you haven’t yet done? In order for me to best look after you, I need to know what matters to you.” Confronting yes, but it is questions such as these that can profoundly refocus the therapeutic relationship in a way that acknowledges not only the limits of our ability to defy death, but the intrinsic value of the life that has been lived. In the post-truth age our obligations as physicians remain the same. We should use information with precision and wisdom, much as a surgeon uses a scalpel. As we strive to provide compassionate care, it is up to us to ensure not only a steady hand, but that the knife is not wrested from our grasp.

Health-related suffering: from Lancet Commission to DeclarAction

As the world unites to achieve universal health coverage (UHC) and we strive to measure, adopt, adapt, and account for progress, awareness of the most basic of health-care needs and intrinsic goals of health systems has been obliterated: the prevention and alleviation of suffering. Suffering is a state of distress that manifests in physical, psychological, social, and spiritual forms. The alleviation of suffering—reducing the pain of debriding a wound or easing the symptoms of a cancer patient—is a core component of medicine and public health. Yet, remarkably, the need to alleviate healthrelated suffering has been largely ignored by health professionals. This omission is unacceptable in any conception of a decent society. Most of the more than 61 million people worldwide who experience serious health-related suffering (SHS) have almost no access to the palliative care and pain relief that could alleviate their symptoms. Poor countries and poor people lack even the most basic of medicines—oral immediate release and injectable morphine—to relieve their pain in moments of need. Indeed, the poorest 50% of the world live in countries that have only 1% of this essential medicine. The Lancet Commission on Global Access to Palliative Care and Pain Relief, in 2017, drew attention to this access abyss, created a novel framework to measure the burden of SHS, and proposed an inexpensive essential package of palliative care and pain relief to include as part of UHC. The shroud of ignorance has been lifted. This Lancet Commission propels health systems into a new realm of accountability. Countries, as well as the global health system, must include the alleviation of suffering as they assess performance on the basis of both the volume of services delivered to patients and the value generated for the patient by these services. The alleviation of suffering must be a fundamental goal of health systems, in addition and complementary to the extension and preservation of life. The Lancet encouraged this Commission to include a programme to translate its evidence into further outcomes. The Commission’s report includes a strategy for accountability, and the publication was accompanied by the creation of an implementation group comprised of global and regional civil society organisations and academic researchers, coordinated by the International Association for Hospice and Palliative Care. On April 5–6, 2018, the implementation group and The Lancet spearheaded a launch of the report at the University of Miami, the host institution of this Commission. Global and regional palliative care civil society organisations attended the event, making it possible to commit to global action. These organisations, together with advocates, researchers, and health-care providers, wrote and adopted the Miami DeclarAction (appendix). The Miami DeclarAction translates the recommendations of the Lancet Commission into tangible commitments. It is a bold initiative led by the palliative care community, promising to promote dignity in life and death. The Miami DeclarAction aims to revitalise health care to encompass suffering. With this broader vision to avert and alleviate human suffering, the palliative care community is presented with an opportunity to reinvigorate itself by integrating with other domains of health care, including prevention, and avoid continuing as a clinical silo. Implementation of the Miami DeclarAction requires an accountability mechanism, which in turn must be For the International Association of Hospice and Palliative Care see https://hospicecare.com Published Online May 18, 2018 http://dx.doi.org/10.1016/ S0140-6736(18)31123-1

Beyond divisive dichotomies in disease classification

www.thelancet.com/lancetgh Vol 5 November 2017 e1073 in designing health-system responses. Time is a continuous variable; however, a widely shared convention is to characterise a disease as either of short or long duration, and the nature of the required health-system response tends to be sufficiently different to justify categorising diseases as either acute or chronic. Adopting two dimensions to stratify diseases generates a fourfold typology: communicable chronic diseases (CCDs), communicable acute diseases (CADs), non-communicable chronic diseases (NCDs), and noncommunicable acute diseases (NADs). Retaining the abbreviations of these diseases preserves the known categorisation and acronym, but now the second letter refers to the crucial issue of chronicity. This framework integrates epidemiological and health-system issues, emphasises the complex and diverse origin of diseases, accommodates for change from scientific discovery and technological progress, and offers a set of acronyms that expresses the complexity of disease patterns. Consider the advantages of this classification when applied to HIV/ AIDS. From an epidemiological control point of view, the fact that HIV/AIDS is communicable is hugely relevant, but from a health-system perspective, chronicity is key as patients live with multiple, acute complications and comorbidities. The debate on nomenclature offers a unique opportunity to secure a more balanced and integrated approach Beyond divisive dichotomies in disease classification