The voices and opinions of people living with NCDs was an appropriate theme for the opening plenary of Day 2 of the Global NCD Alliance Forum, falling on Human Rights Day, Sunday, which was chaired by NCD Alliance Board Member Paula Jones.
The keynote was given by Anne Lise Ryel, a member of the Global Advisory Committee of the Our Views, Our Voices initiative, who introduced the NCD Alliance’s Advocacy Agenda of People Living with NCDs.
“To strengthen the message and illustrate our point, we engage with people who can tell their story. Their voices talk to the heart, their faces get media attention, and their views reach the politicians,” said Anne-Lise.
The potential for people with NCDs, and for civil society more widely, to inspire positive change was then picked up by NCDA CEO Katie Dain, who noted that we all have a real and urgent opportunity to shape the outcome of next year’s UN High-level Meeting (HLM) on NCDs. Dr. Kent Buse, Chief of Strategic Policy Directions at UNAIDS, called for anger at the injustice of NCDs, and for lessons to be learnt from the activism of the AIDS movement – and Sir Trevor Hassell, President of the Healthy Caribbean Coalition, suggested a “NCD grand march of indignation and hope” at the HLM.
"Civil society is the fuel and engine that drives progress" - Kent Buse
The Forum has brought together many highly engaged, highly qualified young people and, as Mellany Murgor of the Young Professionals – Chronic Disease Network, noted:
“[Young people] would like to have a seat at the table from the very beginning … but nothing is stopping us from bringing a folding chair!”
Breaking out of silos…
The second plenary began with Rachel Nugent, Vice President of Global NCDs at RTI International, welcoming the central role afforded to NCDs in the Sustainable Development Goals. The interconnectedness of the SDGs enables and encourages NCD advocates to look beyond their individual areas of expertise and to make links with other agendas, strengthening both causes. We need, as Dr. Anders Nordström said in his keynote in Plenary Two, a new mind-set that “moves away from thinking ‘disease’, and towards what are the drivers of ill health and the risk factors for individuals and populations”. Nordström is Ambassador for Global Health at Sweden’s Ministry for Foreign Affairs.
Dr. Monica Arora, Governing Board Member of the Healthy India Alliance and Executive Director at HRIDAY, noted that building partnerships across sectors is an essential way to highlight the impact of NCDs: “without this broad platform, we won’t achieve our targets or convince the government to reach targets”. The Global Nutrition Report, introduced by Prof. Corinna Hawkes, Director, Centre for Food Policy at City University of London, put nutrition and NCDs in a broader SDGs context, including sustainable food production, equity and inclusion, and peace and stability. Corinna also noted that not only should we be harnessing the knowledge of other sectors to forward the NCD agenda, we should also be generous in offering our expertise to them.
It is at municipal level, as Ariella Rojhani highlighted, that there is increasing focus on action across many agendas: “putting cities and mayors out front where national policy might not be able to go”. The Partnership for Healthy Cities, explained Ariella – Director of Partnership for Healthy Cities at Vital Strategies – provides a comprehensive package of support (grants, technical assistance and communications) to enable cities to deliver high-impact NCD prevention objectives by the end of 2018. Finally, Prof. Mark Hansen used ‘three-for-the-price-of-one’ when describing the importance of talking to young people about health: it affects their health today, their health in later life, and the health of the next generation.
Advocating for NCD prevention and control
Messaging, and appropriate framing of NCDs for different audiences – government, the media, the development community – has been central to many Forum discussions, and was raised in the session on financing on NCDs.
External Relations Officer at the UN Interagency Task Force on NCDs, Alexey Kulikov, spoke about the WHO/UNDP’s mapping of the investment case for NCDs, which, in the 14 countries so far analysed, has found that NCDs account for an annual GDP loss of 3.5–5.9 per cent.
The session on NCD care looked at the complexity of medical interventions for NCDs, which must be accessible, affordable and acceptable. The discussion groups focused on drug treatments – perhaps in future Forums the support systems around NCDs (such as therapy and support groups on mental health) could also be a focus?
The next group looked in more depth at a subject that has cropped up many times over the last two days: the social and commercial determinants of NCDs. Sri Lanka’s work to reduce tobacco consumption was cited as a good example – not only increasing tax, but also ‘deglamorising’ smoking among young people.
The discussion on people living with NCDs called for “simple acts that drive change with passionate advocacy” (Alex Silverstein, Global Advisory Committee member of the Our Views, Our Voices initiative), and more positive messaging. Louise Agersnap invited participation in the World Health Organization's NCDs&me campaign, which is a great opportunity for Forum delegates to share their stories about their experiences with NCDs. There was a strong suggestion that a platform should be created at the UN HLM for people living with NCDs.
"Young people want things that are exciting and cool, things that impact their lives and people around them" (Andrew Twineamatsiko, Youth Advocate, Uganda NCD Alliance)
The session on national planning emphasised the importance of a multisector approach. The connections between NCDs – specifically the emergence of ‘cardio-oncology’ – were raised by Alexander Leon: survivors of childhood cancers have a 15-fold increase in CVD risk in later life.
Breaking down silos and building synergies in the SDGs era
Integrating NCDs with women and children’s health can pay dividends, particularly at key moments in a woman’s life, such as pregnancy, and throughout a child’s early years. There are also continuing issues of discrimination against women with NCDs – for example, the stigma surrounding post-natal depression.
Poverty is a key social determinant of NCDs, and a barrier to progress – and we were cautioned against focusing exclusively on the ‘4x4’ diseases and risk factors when there are many other NCDs that affect the poorest billion. Proving the point about the power of the voices of people living with NCDs, Erneste Simpunga, another member of the Global Advisory Committee of the Our Views, Our Voices initiative, talked about his experiences of rheumatic heart disease in Rwanda.
The session on law heard three astonishing stories of long-term efforts: in the Philippines (tobacco control), Colombia (sugar tax – with Esperanza Cerón Villaquirán, the speaker, featuring in a widely shared, recent New York Times article) and Scotland (minimum alcohol pricing). And successes make a difference more widely:
"As much difficulty as we have in defending these cases (in terms of time, energy and resources), on the whole our side is winning, and we are developing jurisprudence that reaffirms the right to health in the policy space for governments to regulate in the public interest" (Jonathan Liberman, Director, McCabe Centre for Law and Cancer, Australia)
It is at city level that the links between climate change and NCDs are particularly obvious: air pollution, transport, urban development and food systems. In Kigali, a Car-Free Day encourages physical activity on the roads closed to traffic – and also health checks, which have so far reached 9,000 people.
Sustainable diets are key to the health of people and the planet – and Sudhvir Singh, Director of Policy at Norway’s EAT Foundation, highlighted five ‘C’s to improve the food system: chefs, crops, cities, children and (although this – as was noted many times during the day – can be particularly challenging) companies.
The evening was a real treat, thanks to the generosity of the local Forum partner Friends of Cancer Patients. First, a visit to the Mleiha Archaeological Centre (a reminder of the ancient culture of Sharjah and the region), and then dinner in the desert, complete with campfires, traditional dancing, a falcon and – gloriously – camel rides.
Particular thanks to the rapporteurs of the parallel sessions, whose feedback has been invaluable in putting this blog together: Michelle Ballasiotes, Bruno Carrattini, Jessica Craig, Sasanka Dharmasena, Ahmed Khedr, Abdullah bin Shabbir, Sanne de Wit and Vindhya Vatsyayan.
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