Faith Mwangi-Powell

Promotion of access to essential medicines for non-communicable diseases: practical implications of the UN political declaration

Access to medicines and vaccines to prevent and treat non-communicable diseases (NCDs) is unacceptably low worldwide. In the 2011 UN political declaration on the prevention and control of NCDs, heads of government made several commitments related to access to essential medicines, technologies, and vaccines for such diseases. 30 years of experience with policies for essential medicines and 10 years of scaling up of HIV treatment have provided the knowledge needed to address barriers to long-term effective treatment and prevention of NCDs. More medicines can be acquired within existing budgets with efficient selection, procurement, and use of generic medicines. Furthermore, low-income and middle-income countries need to increase mobilisation of domestic resources to cater for the many patients with NCDs who do not have access to treatment. Existing initiatives for HIV treatment offer useful lessons that can enhance access to pharmaceutical management of NCDs and improve adherence to long-term treatment of chronic illness; policy makers should also address unacceptable inequities in access to controlled opioid analgesics. In addition to off-patent medicines, governments can promote access to new and future on-patent medicinal products through coherent and equitable health and trade policies, particularly those for intellectual property. Frequent conflicts of interest need to be identified and managed, and indicators and targets for access to NCD medicines should be used to monitor progress. Only with these approaches can a difference be made to the lives of hundreds of millions of current and future patients with NCDs.

Generating an African palliative care evidence base: The context, need, challenges, and strategies

The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. A collaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activities in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented.

Provision of pain- and symptom-relieving drugs for HIV / AIDS in sub-Saharan Africa.

CONTEXT Although pain and burdensome symptoms among HIV-infected persons can be effectively managed, the availability of opioids and other symptom-controlling drugs is a particular challenge in sub-Saharan Africa. OBJECTIVES This study aimed to identify current drug availability and prescribing practices in 12 sub-Saharan African countries and to examine the barriers and potential facilitators for use of opioids and other key HIV/AIDS symptom-controlling drugs. METHODS This was a cross-sectional survey, integrating data from palliative care facilities and competent authorities within ministries of health in 12 African countries. RESULTS Of 62 responding facilities, problems were reported in accessing named nonopioids, with a small number of facilities unable to dispense them. Less than half the facilities were currently prescribing opioids of any strength. Further problems were identified in terms of the availability and supply continuity of named antiemetics and anxiolytics. The data identified a number of systemic problems, suggesting that opioid supply issues are similar to less controlled drugs, such as antiemetics. Among competent authorities, there was no agreement on whether further opioid expansion was possible. Integration of data from care facilities and competent authorities highlighted a disparity in the understanding of the availability of specific drugs, with competent authorities naming drugs that were not listed by any responding facility in their respective country. CONCLUSION This study shows that opioid expansion needs to balance supply and skills: Currently there are insufficient trained clinical personnel to prescribe, and supply is unreliable. Efforts to expand supply should ensure that they do not weaken current systems.

Improving access to analgesic drugs for patients with cancer in sub-Saharan Africa.

WHO expects the burden of cancer in sub-Saharan Africa to grow rapidly in coming years and for incidence to exceed 1 million per year by 2030. As a result of late presentation to health facilities and little access to diagnostic technology, roughly 80% of cases are in terminal stages at the time of diagnosis, and a large proportion of patients have moderate to severe pain that needs treatment with opioid analgesics. However, consumption of opioid analgesics in the region is low and data suggest that at least 88% of cancer deaths with moderate to severe pain are untreated. Access to essential drugs for pain relief is limited by legal and regulatory restrictions, cultural misperceptions about pain, inadequate training of health-care providers, procurement difficulties, weak health systems, and concerns about diversion, addiction, and misuse. However, recent initiatives characterised by cooperation between national governments and local and international non-governmental organisations are improving access to pain relief. Efforts underway in Uganda, Kenya, and Nigeria provide examples of challenges faced and innovative approaches adopted and form the basis of a proposed framework to improve access to pain relief for patients with cancer across the region.

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‡

Availability of essential drugs for managing HIV-related pain and symptoms within 120 PEPFAR-funded health facilities in East Africa: A cross-sectional survey with onsite verification.

Background: World Health Organization’s essential drugs list can control the highly prevalent HIV-related pain and symptoms. Availability of essential medicines directly influences clinicians’ ability to effectively manage distressing manifestations of HIV. Aim: To determine the availability of pain and symptom controlling drugs in East Africa within President’s Emergency Plan for AIDS Relief–funded HIV health care facilities. Design: Directly observed quantitative health facilities’ pharmacy stock review. We measured availability, expiration and stock-outs of specified drugs required for routine HIV management, including the World Health Organization pain ladder. Setting: A stratified random sample in 120 President’s Emergency Plan for AIDS Relief–funded HIV care facilities (referral and district hospitals, health posts/centres and home-based care providers) in Kenya and Uganda. Results: Non-opioid analgesics (73%) and co-trimoxazole (64%) were the most commonly available drugs and morphine (7%) the least. Drug availability was higher in hospitals and lower in health centres, health posts and home-based care facilities. Facilities generally did not use minimum stock levels, and stock-outs were frequently reported. The most common drugs had each been out of stock in the past 6 months in 47% of facilities stocking them. When a minimum stock level was defined, probability of a stock-out in the previous 6 months was 32.6%, compared to 45.5% when there was no defined minimum stock level (χ2 = 5.07, p = 0.024). Conclusion: The data demonstrate poor essential drug availability, particularly analgesia, limited by facility type. The lack of strong opioids, isoniazid and paediatric formulations is concerning. Inadequate drug availability prevents implementation of simple clinical pain and symptom control protocols, causing unnecessary distress. Research is needed to identify supply chain mechanisms that lead to these problems.

The Cape Town Palliative Care Declaration: Home-Grown Solutions for Sub-Saharan Africa

341 CURRENTLY MORE THAN 28.5 MILLION people are living with human immunodeficiency virus/ acquired immune deficiency syndrome (HIV/ AIDS) in sub-Saharan Africa, accounting for 95% of the global population affected by HIV/AIDS.1 In 2001, approximately 3.5 million people in subSaharan Africa became infected with the HIV virus and 2.3 million people died from AIDS.1 The extent of the pandemic is staggering. The toll in terms of its human impact is dreadful. Most, if not all, of these people will die of their illness. Already impoverished families, communities, economies, and health programs are being decimated. Young orphans are being left to fend for themselves. To add insult to injury, the majority of people with advanced disease will experience severe pain and opportunistic infections and yet they currently have no access to palliative care services and essential drugs such as strong opioids to alleviate their suffering. Cancer also continues to exact a heavy toll. Since the onset of the HIV/AIDS epidemic, there have been more than 150 million new cancer cases globally; sub-Saharan Africa has accounted for half of these.2 Furthermore, HIV/AIDS and cancer are often linked. More than one third of patients with AIDS will develop cancer, particularly Kaposi’s sarcoma. Yet cancer care in most sub-Saharan African countries is largely forgotten and left untreated because it requires relatively expensive radiotherapy and chemotherapy treatments that are unavailable in a continent with less than 5% of the global cancer treatment resources.2 Many of the cancers in the West could be controlled or even cured, but remain fatal in subSaharan, Africa. Indeed, in many parts of sub-Saharan Africa, 60% of people will never see a doctor or nurse before they die. As with AIDS patients, their physical and mental tortures, many of which could be ameliorated with basic palliative care treatments and drugs, remain unattended to. In sub-Saharan Africa, care for people with HIV/AIDS and end-of-life care is mostly undertaken within the community, where patients and families face mammoth challenges. Families, friends, and neighbors become the caregivers. These informal caregivers are poor, often sick themselves, and totally unrecognized for the vital health, social, and educational role they play. They literally provide a lifeline in communities ravaged by HIV/AIDS yet they generally operate outside the formal health systems with little access to professional guidance, training, and support. Palliative care should be a component of quality health care and integrated into the health care system.3 Formal health systems need to take account of the informal networks of community caregivers and vitally to ensure that professional support is made available to underpin community-based care, enabling access to advice and stronger medication where this is needed. The ab-

Provision of Palliative Care in Low- and Middle-Income Countries: Overcoming Obstacles for Effective Treatment Delivery

Despite being declared a basic human right, access to adult and pediatric palliative care for millions of individuals in need in low- and middle-income countries (LMICs) continues to be limited or absent. The requirement to make palliative care available to patients with cancer is increasingly urgent because global cancer case prevalence is anticipated to double over the next two decades. Fifty percent of these cancers are expected to occur in LMICs, where mortality figures are disproportionately greater as a result of late detection of disease and insufficient access to appropriate treatment options. Notable initiatives in many LMICs have greatly improved access to palliative care. These can serve as development models for service scale-up in these regions, based on rigorous evaluation in the context of specific health systems. However, a multipronged public health approach is needed to fulfill the humane and ethical obligation to make palliative care universally available. This includes health policy that supports the integration of palliative care and investment in systems of health care delivery; changes in legislation and regulation that inappropriately restrict access to opioid medications for individuals with life-limiting illnesses; education and training of health professionals; development of a methodologically rigorous data and research base specific to LMICs that encompasses health systems and clinical care; and shifts in societal and health professional attitudes to palliative and end-of-life care. International partnerships are valuable to achieve these goals, particularly in education and research, but leadership and health systems stewardship within LMICs are critical factors that will drive and implement change.

How to analyze palliative care outcome data for patients in Sub-Saharan Africa: an international, multicenter, factor analytic examination of the APCA African POS.

CONTEXT The incidence of life-limiting progressive disease in sub-Saharan Africa presents a significant clinical and public health challenge. The ability to easily measure patient outcomes is essential to improving care. OBJECTIVES The present study aims to determine the specific factors (if any) that underpin the African Palliative Care Association African Palliative Outcome Scale to assist the analysis of data in routine clinical care and audit. METHODS Using self-reported data collected from patients with HIV infection in eastern and southern Africa, an exploratory factor analysis was undertaken with 1337 patients; subsequently, a confirmatory analysis was done on two samples from separate data sets (n = 445). RESULTS Using exploratory factor analysis initially, both two- and three-factor solutions were examined and found to meet the criteria for simple structure and be readily interpretable. Then using confirmatory factor analysis on two separate samples, the three-factor solution demonstrated better fit, with Goodness-of-Fit Index values greater than 0.95 and Normative Fit Index values close to 0.90. The resulting three factors were 1) physical and psychological well-being, 2) interpersonal well-being, and 3) existential well-being. CONCLUSION This analysis presents an important new opportunity in the analysis of outcome data for patients with progressive disease. It has advantages over both the total scoring of multidimensional scaling (which masks differences between domains) and of item scoring (which requires repeated analyses). The three factors map well onto the underlying concept and clinical goals of palliative care, and will enable audit of facility care.

Models of delivering palliative and end-of-life care in sub-Saharan Africa: a narrative review of the evidence.

Purpose of reviewThis narrative review examines evidence for models of palliative and end-of-life (eol) care delivery in sub-Saharan Africa (SSA) since 2010. It highlights recent developments, on-going challenges and innovative approaches used to address obstacles to increased access to care. Recent findingsElectronic databases were searched for the literature published in English during the period 2010–2012 around broad thematic areas of palliative and eol care delivery models in SSA. Literature showed increased palliative and eol care service development, underpinned by advocacy work undertaken by regional and national palliative care associations. Despite this increase, care provision remains inadequately integrated in national public health agendas and systems. Consequently, it continues to be heavily reliant upon nongovernmental, community-based and home-based care (HBC) models. Efforts are, however, underway to integrate palliative care into national health systems, which should increase access to care. National policies and government financing will be important to sustain this integration. SummaryAlthough community and HBC programs remain primary models of palliative and eol care delivery in SSA, there is an urgent need to develop a public health approach that integrates care into national health systems to increase accessibility.