IDF Response to WHO Zero Draft of Global NCD Action Plan 2013-2020 The International Diabetes Federation (IDF), an umbrella organisation of over 220 national diabetes associations in 170 countries, is the unique global voice of the diabetes community. The global diabetes epidemic is an urgent and overwhelming challenge which no country has under control. In 2011 there were 366 million people with diabetes, and this number is expected to rise to 552 million people by 2030 with the greatest acceleration in low and middle income countries (LMICs). Up to half of all people with diabetes are still undiagnosed. While the challenge remains immense, the global diabetes community has made significant progress in elevating diabetes onto the global agenda, with the 2006 UN Resolution on Diabetes and the 2011 UN High-Level Summit on Non-communicable diseases (NCDs). Now, IDF’s Global Diabetes Plan 2011-2021 now sets out a ten year framework for action with three priority objectives – to improve health outcomes, prevent type 2 diabetes and prevent discrimination against people with diabetes – which we call on WHO to reflect within the Global NCD Action Plan 20132020. IDF commends the WHO Zero Draft of the Global Action Plan on NCDs (GAP), which builds on progress made in the previous WHO Action Plan and reflects the changed political landscape for diabetes and NCDs after the historic UN Summit. We recognise that WHO have reflected many of IDF and the NCD Alliance’s (NCDA) recommendations from the initial consultation on the GAP in September, and applaud the Secretariat for doing so. The Zero Draft represents a robust roadmap of implementation for the UN Political Declaration, and outlines an Action Plan to drive progress in a new era for diabetes and NCDs. As a founding member of NCDA, IDF strongly supports all the recommendations proposed in NCDA’s submission to this consultation. The remainder of IDF’s submission presents a diabetes perspective on the feedback points outlined by WHO in the Zero Draft. In Summary, IDF’s diabetes-specific recommendations are: - The GAP to recognise that diabetes is a serious disease in its own right and never just a risk factor for CVD, that it is not a new disease and that cost-effective solutions exist to prevent and manage diabetes, and that it is a critical entry point for health more broadly due to its synergies across mental disorders, communicable diseases and maternal newborn child health. - The GAP’s overarching principles – specifically human rights and empowerment – to be clarified and underpinned by specific action points for alleviating the discrimination and inequality in diabetes prevalence and care, particularly the global inequality in access to insulin for children with type 1 diabetes and ensuring people with diabetes are empowered and engaged to be at the centre of the response. - National Diabetes Plans or Programmes – which strengthen the provision of diabetes prevention, treatment and care and fully engage civil society and people with diabetes in policy development, implementation and monitoring – to be at the heart of national multisectoral NCD policies and strategies. - The GAP to reflect the fundamental importance of healthy nutrition for reducing diabetes, obesity and NCD risk, including actions that focus on both under- and over-nutrition across the life-course and during the early childhood development. - The GAP to strengthen action on conducive environments for health promotion, with a specific focus on cities which promote physical activity and the greater engagement of city authorities. - The GAP to focus on early detection and treatment as a cost-effective means of avoiding and delaying serious complications (including amputations, kidney failure, and blindness) and premature death from diabetes. 1 - The GAP to recognise the critical importance of empowering people with diabetes and those at risk to improve their own health outcomes, ensuring self-management education for diabetes is delivered across the life course by fully trained, integrated and multidisciplinary health teams. - The GAP to recognise that diabetes is a critical maternal and newborn child health issue, with gestational diabetes (GDM) and uncontrolled type 1 diabetes causing maternal morbidity and mortality and poor maternal health increasing risk of type 2 diabetes in future generations. - The GAP to recognise that major challenges for accurate diabetes and NCD monitoring exist around the world, and provide clear and concrete recommendations for Member States to scale up integrated and effective surveillance across the four NCDs and their shared risk factors - The GAP to be full resourced and proposed actions for selected UN agencies strengthened in order to harness the expertise and resources across the entire UN system. 2 WHO Feedback Point IDF Detailed Comments Overview of Global Action Plan – Scope, Targets, Goals and Relationship to existing Plans 2: Guidance on the coherence of the proposed objectives for the Action plan Objectives: Support the currently proposed objectives. Recommend the GAP includes a (prominently presented) flow chart to indicate more clearly how the objectives 1-6 relate to each other. Cross-cutting objectives: Support cross-cutting objectives, and recommend adding resources, partnerships, integration and accountability as additional cross-cutting objective. Also recommend explicitly making clear throughout what the action points are for these cross-cutting objectives, as it is currently not clear. Principles: Commend the inclusion of human rights, universal coverage and equity, the life course approach, evidence-based practice and the empowerment of people as principles that underpin the GAP. A rights-based approach and empowerment of people is particularly important for people with diabetes. The GAP should define clear priorities for how the rights-based approach to health and commitment to equity will be implemented within the response to diabetes and NCDs. In particular, the GAP should draw from the principles of IDF’s Charter of Rights and Responsibilities for People with Diabetes and uphold the rights of people with diabetes and NCDs to care, information and education and social justice. The inclusion of clear actions on self-management education and health literacy in Objective 5 will be crucial in this regard. The GAP should include a greater focus on culturally sensitive programmes, policies and advocacy to alleviate the discrimination and stigma surrounding diabetes in sectors such as marriage, employment and education. Proposed actions for partners: Recommend that under each section for “proposed action for international partners” the GAP clearly defines what partners are being referred to, and allocates specific actions for each group. Given the critical role of civil society/NGOs in NCD prevention and control, we specifically recommend that civil society/NGOs be mentioned under “international partners” and be assigned specific actions throughout the GAP. Objective 1: Strengthen advocacy and raise the priority of NCDs in UN development agenda 5: Guidance on appropriate indicator to monitor global trends to assess global progress made in the implementation Recommend Objective 1 be measured by the presence of a high level target or goal for NCD prevention and control within the post-2015 development agenda, and the presence of NCD-related indicators in goals for other development issues such as poverty, inequality and sustainability. 6: Guidance on possible modification required concerning proposed actions for MS, international partners and secretariat In general, the objective captures the advocacy agenda for NCDs. However a greater focus on advocacy to address the grave lack of essential treatment and care for diabetes and NCDs is needed. The advocacy actions proposed for all sectors need to cover the urgent need to provide essential and lifesaving treatment and care for these diseases. Recommend additional indicators on progress towards the ’25 by 25’ mortality target and other elements of the GMF; the proportion of countries with NCD policy frameworks; the conclusions of the UN Secretary General’s Progress Report on NCDs in 2014; increased budgetary allocations and the presence of predictable and sustainable financing for diabetes and NCDs; progress on the social determinants of health. In proposed actions for Member States: - (b) add evidence on discrimination and stigma surrounding diabetes and NCDs, since they pose significant barriers to prevention, treatment and care. - (c) strengthen the “NCD social movement” with the engagement of other sectors, including the media and health care professionals such as nurses and care providers. Healthcare professionals knowledge of the complexity of the diabetes and NCD response makes them a crucial partner for advocacy and policy development more generally. - (c) add advocacy to ensure diabetes/NCDs are included in the post-2015 development agenda. This should not solely be an action for international partners. - (d) add increased allocation of Official Development Assistance (ODA), as diabetes and NCDs continue to be grossly underfunded and neglected in bilateral and multilateral development aid. This is contrary to the Paris Declaration on Aid Effectiveness. In proposed actions for international partners: 3 - Recommend adding an action point on “resources”, including bilateral and multilateral development aid (ODA). Objective 2: Strengthen capacity, leadership, governance and accountability to accelerate country response for NCDs 7: Guidance on appropriate indicator to monitor global trends to assess global progress made in the implementation Recommend that in addition to an indicator for the number of countries with a national NCD policy and unit, progress is measured by: budgetary allocations for diabetes and NCDs; level of funding for diabetes and NCDs; the number of NCD staff; the number of meetings between NCD units and civil society. 8: Guidance on possible modification required concerning proposed actions for MS, international partners and secretariat In proposed actions for Member States: - (d) the multisectoral NCD policy must be fully aligned to the multisectoral strategy in Obj 3, led by a strong NCD Unit in the Ministry of Health, and be fully costed and adequately resourced. Recommend adopting the “Three Ones” principle of UNAIDS which encouraged governments to develop one agreed action framework, one national coordinating authority, and one agreed country-level monitoring and evaluation system. - (d) where appropriate, the NCD policy should include discrete disease-specific plans/programmes, including National Diabetes Plan (NDP) or Programme to improve the organisation, quality and reach of diabetes prevention, treatment and care. NDPs should address primary and secondary prevention, education, management, treatment and care, and be developed in collaboration with all stakeholders including civil society and people with diabetes. In proposed actions for Secretariat: - (d) in technical support, recommend adding guidance to countries on what constitutes a national NCD/disease-specific plan and best practice In proposed actions for international partners: - (c) recommend that the social movement be strengthened to reflect the contribution of civil society in securing leadership and political priority. This should focus on active partnerships between civil society and governments – particularly through whole of government mechanisms or parliamentary committees – to keep diabetes and NCDs on the political agenda. - Recommend adding an action point on accountability and monitoring, in recognition of the crucial importance of civil society monitoring and shadow reporting in measuring national progress on diabetes and NCDs. Currently both the level of global expenditure on NCDs, particularly through Official Development Assistance (ODA), and the means by which resources for NCDs are reported and monitored (e.g. by WHO and OECD) are inadequate. Indicators for this action should therefore measure both progress on the level of resources for NCDs and the tracking and reporting of those resources. Objective 3: Promote whole-of-government approach for multisectoral action and partnerships for NCDs 9: Guidance on appropriate indicator to monitor global trends to assess global progress made in the implementation Recommend indicators on the implementation of multisectoral policy and strategy; regular meetings of a multisectoral partnership or forum; and the number of meetings held between civil society, communities and policymakers; proportion of countries and UN agencies using the Health in All Policies (HiAP) model in sectors to make decisions. 10: Guidance on possible modification required concerning proposed actions for MS, international partners and secretariat In general, commend WHO for recognising the important role played by people living with NCDs, NGOs, and wider civil society in the support of national efforts for NCD prevention and control. Recommend this sentiment is better reflected in the subsequent actions, with the role of patient organisations and relevant NGOs within multisectoral mechanisms, partnerships and forums for NCDs explicitly stated. Measuring progress on the whole of society response to diabetes will additionally require indicators across multiple sectors including: food and agricultural policies, trade agreements, urban planning and transport. In proposed actions for Member States: - (e) recommend explicitly referencing the Health in All Policies (HiAP) approach when referring to policy consistency across different sectors. Objective 4: Reduce modifiable risk factors for NCDs and create health promoting environments 4 11: Guidance on appropriate indicator to monitor global trends to assess global progress made in the implementation Recommend all exposure indicators currently being discussed in the WHO consultation. For diabetes primary prevention, priority indicators are overweight/obesity; blood pressure; blood glucose; physical inactivity; tobacco; and alcohol. 12: Guidance on possible modification required concerning proposed actions for MS, international partners and secretariat In general, commend the GAP actions for promoting healthy diet and physical activity, as these are fundamentally important in curbing the diabetes and obesity epidemic. Recommend the need for a comprehensive set of indicators for nutrition, including but not limited to the current proposed indicators in the WHO consultations. Priority indicators should include childhood obesity; marketing of unhealthy foods to children; fruit and vegetable consumption; calorie intake; fat intake; consumption of sugar-sweetened beverages (SSB); and energy density – such as intake of added sugar as a percentage of total daily energy. Recommend that WHO’s ‘health indicators for sustainable development’ series is used for indicators on conducive environments – such as the percentage of person trips/passenger kilometers travelled by urban public transport or active travel. In general, recommend actions specifically focus on targeting high risk and vulnerable populations. There is conclusive evidence that diabetes can be prevented in people at high risk through nutrition counseling, increasing physical activity and weight reduction. If resources are available, Member States should implement lifestyle interventions for high risk groups such as women with GDM, indigenous communities, overweight children in schools and in workplaces. In proposed actions for Member States on promoting healthy diets: Strongly support “developing or strengthening of national nutrition policies and action plans” but note that the recommendations in this section are severely weakened by use of the word “consider.” (b) include specific action on the energy or calorie content of foods in action for food producers and processes. Energy intake needs to be adequate, but not excessive. Consumption of too much energy is the main driver behind the obesity epidemic, and maternal and infant undernutrition fuels the intergenerational cycle of NCDs. Policies related to healthy diet will be ineffective without addressing calorie intake, and need to focus on reducing calorie intake in areas with high obesity prevalence and ensuring adequate (and nutrient dense) calories in areas with high prevalence of undernutrition. (b) strengthen the action point to “reduce the content of free sugars” with action to reduce the production, marketing and consumption of sugar-sweetened beverages (SSB.) In light of substantial evidence showing that SSB are leading risk factors for obesity and diabetes, the GAP needs to drive an overall reduction in the over-consumption of these energy dense drinks to promote a healthy diet. (f-h) strengthen the aims on public campaigns, nutrition education and nutrition labeling to include a specific focus on the overconsumption of energy – and energy dense and nutrient poor foods such as SSB - in order to enable people to make well informed and healthy choices. Recommend adding an action point on whole-of-government and multisectoral action to increase access to healthy foods, including coordination with agricultural ministries and the agricultural sector involved in farming, procurement, processing, distribution and sale of food. In proposed actions for Member States on promoting physical activity: Recommend a greater focus on preventing sedentary behaviour and inactivity as well as promoting physical activity. Sedentary time is associated with an increased risk of diabetes and NCDs, and can be prevented through culturally appropriate policies in specific settings such as schools and workplaces. In proposed actions for Member States on other modifiable risk factors: (c) in promoting a conducive and health promoting environment, recommend greater engagement of city authorities as specific actors. Recommend this action prioritises: safe, equitable and low carbon transport such as active travel strategies and incentives; restrictions on car use; and urban planning for streets, public spaces and workplaces which encourage physical activity and social interaction. WHO’s Healthy Cities Plan should be strengthened, monitored and expanded across the UN as the crucial vehicle for action in this area, and WHO’s technical assistance should focus on developing and disseminating best practice demonstration projects. Recommend adding an action point on maternal and newborn child health. The GAP focuses predominantly on adult risk factors rather than a life-course approach, requiring actions for reducing risk in the early life stages and during pregnancy. This action points would cover issues including - 5 malnutrition and low birth weight and pregnancy conditions such as maternal obesity and gestational diabetes. Also recommend that MNCH is identified as a specific synergy in Annex 1. Objective 5: Strengthen and reorient health systems to address NCDs through people-centred primary care and universal coverage 13: Guidance on Recommend indicators to measure strengthened and reoriented health systems in LMICs including appropriate percentage increase of health facilities which can effectively treat diabetes and NCDs, including access to indicator to monitor essential medicines and technologies; percentage of health workers trained with diabetes and NCD global trends to material (such as the WHO PEN Package and management guidelines); increased use of referral systems. assess global For the secondary prevention of diabetes complications, indicators could include HbA1c; blood pressure; progress made in lipids; eGFR (renal function); haemoglobin; use of metformin; RAS inhibitors; and tertiary prevention to the implementation prevent further complications (heart attack, renal failure, lower limb amputation, cancer and mortality). 14: Guidance on possible modification required concerning proposed actions for MS, international partners and secretariat In general, commend the detailed set of commitments on health systems strengthening for Member States, which if implemented will improve treatment and care for the millions of people with diabetes worldwide. In proposed actions for Member States: - (c) support the priority of strengthening people-centred primary care for ensuring early detection, treatment and care in low-income settings, where health systems remain gravely inadequate. However, given the complex and lifelong nature of diabetes – and risk of recurrent hypoglycaemia, multiple comorbidities, complications and hospitalizations – strongly recommend an interdisciplinary approach where possible, involving a range of specialist health care workers and other disciplines (such as social support) where resources allow. In LMICs, action on integration should focus on improving referral systems. - (d) recommend strengthening the emphasis on self-management education to reflect its fundamental importance in the treatment and care of diabetes and other NCDs. Self-management education needs to be offered to all people with diabetes – and their carers – at diagnosis and sustained across the lifecourse to enhance the knowledge, skills and confidence of people to manage the disease effectively. - (d) recommend the GAP prioritises urgent action in the training of health workers – whose knowledge of diabetes remains poor in many countries – with clinical guidance through prevention and management guidelines and protocols. - (e) support action points on access to essential medicines and technologies for NCDs as this remains a major challenge for millions of people with diabetes worldwide. The focus in this action should be on the availability of essential, affordable and quality-assured medicines and technologies, and recommend alignment with the WHO Model Essential Medicines Lists. Also recommend the implementation of nationally standardised treatment protocols and pathways to ensure appropriate use and cost-effectiveness of diabetes medicines. In proposed actions for Secretariat: - (e) in research, recommend strengthening WHO’s research on cost-effectiveness from focus on the national application of the ‘best buys and good buys’ to more comprehensive research agenda. This could include research into cures, improved treatment, and evaluating the implementation and costeffectiveness of different care models for people with diabetes and NCDs at different stages of the life course. Objective 6: Monitor NCD trends and determinants and evaluate progress 15: Guidance on appropriate indicator to monitor global trends to assess global progress made in the implementation Given the statistical nature of disease monitoring, recommend precise indicators are established to ensure all stakeholders are accountable. Propose the following: - percentage of the population covered by statistical information systems; range of information collected (personal characteristics, risk factors, quality and outcomes); local availability of proper database/statistical software; ability to report on data quality compared to international standards; adoption of standardized definitions (or possibility to map local definitions with international standards); 6 16: Guidance on possible modification required concerning proposed actions for MS, international partners and secretariat - production of regular regional/national reports for each disease; - public disclosure of health statistics (transparency and accountability); - ability to deliver NCD data to international agencies and report regularly on the Global Monitoring Framework for NCDs; - direct use of health information for policy making (through clinical audits or quality improvement programs); In general, support GAP focus on monitoring and surveillance. Diabetes surveillance remains weak worldwide. Accurate cause of death reporting for diabetes – where people die of complications – is a major problem in both high- and low-income countries, causing the true impact of diabetes to be hidden and the response often not evidence based. In general, the GAP does not address major barriers in the implementation of a complex information infrastructure required by countries to improve diabetes and NCD surveillance. The actions currently proposed for Member States are currently too broad and vague to ensure progress on this challenge. To ensure this objective is realistic and achievable, the GAP needs to provide precise recommendations for what is needed on the ground. In proposed actions for Member States: - (a) under law, action points should include updating legislation on privacy and data protection to allow, in the full respect of international ethical principles, the collection and processing of health information for public health surveillance and analysis of NCD data. Regulation should specify how data from multiple sources can be gathered by countries and regions, including health care administrative data, mortality/disease registries, risk factors and pharmaceutical prescriptions. - (b) under data collection, action points should include organising secure data collection according to solid epidemiological methods and through low-cost open source software that can be freely exchanged and adaptable without restrictions for use in low resource settings. Data capturing and data entry systems should allow standardization of quality of care and outcomes for services and individuals, across the whole spectrum of NCDs. Given the crucial need for primary and secondary prevention of diabetes, we stress that data collection should be population-wide. - (d) under disease registries, action points should include identify common definitions and methods to create and maintain disease registries across all NCDs. Strongly recommend the focus is on implementing monitoring frameworks that are adaptable to any disease (with consideration of the specificity of each disease pathology) and avoiding models that would best apply to one area only (e.g. survival analysis in cancer). - (e) under strengthen capacity, action points should include facilitate the exchange of best practices in data processing and statistical analysis, and develop programs that enable sharing and dissemination of successful experiences across countries and regions. In proposed actions for Secretariat: - (a) recommend WHO provide direct technical support on identifying best practice and the technology transfer of solutions proven to work in different conditions and across all NCDs. Such practices could include: how to coordinate disease registries across regions and countries; how to set up multidisciplinary teams to strengthen information infrastructure; and developing open source technology to allow data collection, statistical analysis and secure sharing of data for NCDs across borders. 18: Feedback as to whether the ‘Zero Draft’ action plan sufficiently reflects all commitments included in the PD on NCDs From a diabetes perspective, the following commitments made in the Political Declaration on NCDs are particularly absent from GAP: - Improving affordability, accessibility and maintenance of essential diagnostic equipment and technologies for NCDs - Promoting patient empowerment and ensuring the full and active participation of people with NCDs in national response - Promoting capacity building of NCD-related NGOs at national and regional levels - Inclusion of NCD prevention and control within sexual and reproductive health and maternal-child 7 health programmes Additional Comments Annex 1: Synergies between NCDs and major conditions Annex 2: Proposed Action for UN Agencies In general, commend the recognition of synergies between NCDs and other conditions including mental disorders, communicable diseases and healthy ageing and disabilities. However Annex 1 misses some major linkages between diabetes and other health issues. Diabetes is not only a critical entry point for the prevention and control of NCDs – given its shared risk factors and multiple morbidities including heart attack, cancer, stroke – but for health and health systems more broadly. Recommend that GAP include the following diabetes synergies: - As acknowledged in the UN Political Declaration, diabetes is a significant and overlooked maternal health issue. Strongly recommend GAP incorporates maternal newborn child health (MNCH) in the synergies section, and secures the integration of diabetes and NCDs into MNCH policies, programmes and women’s health services. - Diabetes increases the risk of infectious diseases including HIV, TB and Malaria. Access to vaccinations related to communicable diseases (such as TB and influenza), and an integrated response to diabetes, NCDs and the health-related MDGs is essential, particularly in LMICs facing the double burden of disease. The associations between diabetes and mental disorders need to be recognised in the GAP. Mental health disorders increase the risk of diabetes, and people with diabetes are more likely to suffer from mental disorders, including depression, dementia, Alzheimer’s, anxiety and stress. Recommend that GAP include action to strengthen human resources which can provide health, social support and counselling for people with diabetes and mental disorders, with a specific focus on the needs of vulnerable and marginalised populations. Commend WHO’s proposed actions in Annex 2, which if implemented will leverage the resources and expertise of various UN agencies, programmes and funds to accelerate the global response to diabetes and NCDs. Comments and additional recommendations for diabetes and NCDs in the following agencies include: - UNDP: Commend the increasing leadership role of UNDP in NCDs, including integrating NCDs into UNDAF’s and poverty-reduction strategies. - UNFPA: In supporting Ministries of Health in integrating NCDs into maternal health strategies, include a particular focus on identifying and treating women with GDM. Integrating GDM into UNFPA’s mandate will be crucial means to address this neglected maternal health issue, prevent mortality for mothers and their infants, and prevent the future early onset of diabetes and obesity. - UNWOMEN: In supporting Ministries of women and social affairs to promote gender based approaches to NCDs, recommend a specific focus on promoting of a life course approach to health (including GDM, maternal health and maternal malnutrition). - ITU: In supporting the Ministry of Information promote healthy lifestyles with mobile phones, include specific focus maintaining a healthy weight, staying physically active and leading a healthy diet (adequate energy intake, avoiding energy dense and nutrient poor foods such as SSB and consumption of fruits and vegetables). - UN Habitat: Support city authorities, urban planners and mayors to prevent diabetes and NCDs with health promoting environments, prioritising safe, equitable and low carbon transport measures and urban planning to promote physical activity and social interaction. - FAO: In addition so strengthening the capacity of Ministries of Agriculture to address NCDs, ensure a greater focus on overnutrition and obesity in FAO’s advocacy and policy agenda 8
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