Abstract
In Chile, like in other Latin American countries, cancer incidence is rising rapidly with a massive social and economic burden, and this situation has worsened after the COVID19 outbreak. In 1986 the Chilean government created two antineoplastic drugs for adults (PANDA) and children (PINDA). Later, several cancers, cancer prevention plans and palliative services were covered by the GES/AUGE plan. However, the lack of a national cancer register, disparities in coverage and centralisation of specialists and oncologic infrastructure made the creation of a new National Cancer Plan necessary. Civil society, particularly non-governmental organisations (NGOs), pushed for a National Cancer Law as the legal framework for the National Cancer Plan. Their role is crucial to expose the patient perspective. Likewise, the collaborative work with clinic specialists, scientific societies, government and stakeholders is essential to face a multifactorial disease such as cancer. In this article, we analyse the role of civil society, particularly NGOs, in developing the Chilean National Cancer Plan and the National Cancer law. Through public consultation (including the Massachusetts Institute of Technology-COLAB platform, telephone and online surveys), we show that the community's main concerns were treatment financing, coverage, transparency of public policies, integral cancer care, health promotion and prevention. Historically, NGOs have played an assistant role; however, this is changing towards a more preponderant role in public policies, as seen in other developed countries, giving the strength to the civil society to collaborate in the construction of patient-centred cancer policies.
Key words: Cancer policies, Cancer law, NGO, Chile, civil society.
Keywords
References
- Global Health Observatory (GHO). WHOW. World Health Statistics. 2016 [Available from: https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates. (last accessed 10th May, 2021).Google Scholar ↗
- Organisation for Economic Co-operation and Development (OECD). Health at a Glance 2019: OECD Indicators. 2019, Available from: https://doi.org/10.1787/4dd50c09-en. (last accessed 09th May, 2021).DOI ↗Google Scholar ↗
- Knaul F, Shulman, L. Closing the Cancer Divide: A Blueprint to Expand Access in Low and Middle Income Countries (November 1, 2011). Harvard; 2012.Google Scholar ↗
- Goss PE, Lee BL, Badovinac-Crnjevic T, Strasser-Weippl K, Chavarri-Guerra Y, St Louis J, et al. Planning cancer control in Latin America and the Caribbean. The Lancet Oncology. 2013;14(5):391-436.Google Scholar ↗
- Letelier A, Cifuentes Rivas G. [Waiting list in a public health facility in Santiago, Chile]. Medwave. 2014;14(6):e6000.Google Scholar ↗
- Ward ZJ, Walbaum M, Walbaum B, Guzman MJ, Jimenez de la Jara J, Nervi B, et al. Estimating the impact of the COVID-19 pandemic on diagnosis and survival of five cancers in Chile from 2020 to 2030: a simulation-based analysis. The Lancet Oncology. 2021;22(10):1427-37.Google Scholar ↗
- Barrera CR, Negron CP, Barria RM, Mendez CA. Rights and duties policy implementation in Chile: health-care professionals' perceptions. Health Expectations. 2016;19(5):1062-70.Google Scholar ↗
- Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. British medical journal. 2013;346:f2614.Google Scholar ↗
- Constand MK, MacDermid JC, Dal Bello-Haas V, Law M. Scoping review of patient-centered care approaches in healthcare. BMC Health Services Research. 2014;14:271.Google Scholar ↗
- Scholl I, Zill JM, Harter M, Dirmaier J. An integrative model of patient-centeredness - a systematic review and concept analysis. PLoS One. 2014;9(9):e107828.Google Scholar ↗
- Souliotis K, Peppou LE, Agapidaki E, Tzavara C, Debiais D, Hasurdjiev S, et al. Health democracy in Europe: Cancer patient organization participation in health policy. Health Expectations. 2018;21(2):474-84.Google Scholar ↗
- Departamento de estadística e información de Salud (DEIS), Ministerio de gobierno de Chile. Mortalidad e incidencia de cáncer 2019 [Available from: https://deis.minsal.cl/. (last accessed 5th July 2020).Google Scholar ↗
- Ministerio de salud y Desarrollo Social Gobierno de Chile. Plan Nacional de Control de Cáncer 2018-2022. In: Salud Ministerio de Chile, editor. 2018. Available from: https://www.gob.cl/plannacionaldecancer/ (last accessed 10th May, 2020).Google Scholar ↗
- Ipsos-Chile. Encuesta de opinión pública sobre el cáncer-Chile. Ipsos Chile; 2019.Google Scholar ↗
- Kielstra P. Cancer Control, access and inequality in Latin America. A tale of light and Shadow. The Economist Intelligence Unit; 2017.Google Scholar ↗
- Gobierno de Chile. Decreto exento Nº4 del Ministerio de Salud el 31 de enero de 1986. In: Ministerio de Salud, editor. 1986.Google Scholar ↗
- UICC. National Cancer Control Planning Resources for Non-Governmental Organizations. In: Control GC, editor. Organizations. Available from: https://ncihub.org/ (last accessed 29th July, 2020)Google Scholar ↗
- Institute of Medicine (US) Committee on Cancer Control in Low- and Middle-Income Countries. Cancer Control Opportunities in Low- and Middle-Income Countries: Insitute of Medicine of the National Acedemies; 2007. 340 p.Google Scholar ↗
- Azenha G, Bass LP, Caleffi M, Smith R, Pretorius L, Durstine A, et al. The role of breast cancer civil society in different resource settings. Breast. 2011;20 Suppl 2:S81-7.Google Scholar ↗
- Organization WH. Principles Governing Relations with Nongovernmental Organizations. 2019.Google Scholar ↗
- Topazian H, Cira M, Dawsey SM, Kibachio J, Kocholla L, Wangai M, et al. Joining Forces to Overcome Cancer: The Kenya Cancer Research and Control Stakeholder Program. J Cancer Policy. 2016;7:36-41.Google Scholar ↗
- Durstine A, Leitman E. Building a Latin American cancer patient advocacy movement: Latin American cancer NGO regional overview. Salud Pública de México. 2009;51 Suppl 2:s316-22.Google Scholar ↗