The social determinants of health are the social conditions in which people are born, grow, live, work and age that have a direct impact on their health and well-being, causing health inequities across countries and regions: the lower an individual’s socio-economic position, the higher their risk of poor health.
Despite considerable attention over many decades, striking inequalities among and within countries still exist. Several social factors that can influence health can be found in the image below.
The Social Determinants of Health | Source: Henry J. Kaiser Family Foundation
The right to social security and protection is recognised in numerous human rights instruments, including the Universal Declaration of Human Rights (Article 22) and the International Covenant on Economic, Social and Cultural Rights (Article 9) and is crucial for guaranteeing a life in dignity. As a fundamental human right, social security is a potent tool to combat discrimination and an essential instrument for reducing poverty and promoting social inclusion. It aims to provide income security and support at every stage of life for everyone, with particular attention to the most marginalised.
Social protection policies are of particular importance for patients suffering from chronic illnesses with potentially debilitating complications such as thalassaemia. Unfortunately, inequities exist between countries and regions, as high-income countries have more robust and inclusive social security systems, while low-resource countries focus mainly on essential provisions. This leaves the social determinants of health unaddressed to a large extent in most countries with high prevalence of thalassaemia, forcing patients to enter into poverty and limiting their access to appropriate health and other care.
After targeted literature review and a questionnaire-based survey including many countries with significant population of patients with thalassaemia and patient representative associations, Thalassaemia International Federation has put together a list of social benefits available per country. The following table summarises the findings, presenting data collected for thirty-eight (38) countries worldwide regarding available benefits falling under three categories:
- General Population Benefits, i.e. benefits on their status as citizens, in the context of the contributory social insurance schemes of each country (child and family, maternity, sickness, unemployment, employment injury, survivors, old age, invalidity and disability benefits).
- Disability Benefits, i.e. benefits on their status as disabled persons, either contributory (under the social security legislation) or non-contributory (under the disability legislation), provided in the context of the disability assessment policy in place and if patients are deemed eligible.
- Disease-specific Benefits, i.e. benefits on their status as people with haemoglobin disorders, either contributory (under the social security legislation) or non-contributory (under the disability legislation), in the context of disease-specific policies in place.
Table 1. Overview of benefits provided to people with haemoglobin disorders in 38 countries
Five countries (Cyprus, Greece, Italy, India, and United Arab Emirates) have reported disease-specific social benefits incorporated within national legislation, elaborated further in the text below.
CYPRUS: In Cyprus, people with thalassaemia patients are not considered disabled persons but may apply for a disability assessment if they wish so. There is a number of disease-specific state social benefits provided though, including a monthly allowance of 75-150 EUR for their transport from and to the thalassaemia centres, depending on their place of residence, a municipal tax reduction of 40-50% (regarding waste collection), facilitation of employment in the public sector and access to public universities in the context of the disability law (10% of available positions must be taken from people from all disabilities groups). Patients may also participate for free in sports classes provided by the Cyprus Sports Organization.
GREECE: In Greece, disease-specific social benefits include the annual provision of 22 leave days for patients and their parents for blood transfusions, the coverage of transport expenses for patients that live far from their treating centres, a monthly allowance as financial support, the right to full retirement after 15 years of employment, facilitated access (by quotas) to higher education and employment. People with a 67% disability can claim a disability pension after 5 years of employment and are entitled to tax exemption for the purchase of a car.
ITALY: In Italy, social benefits for people with thalassaemia are granted either pursuant to specific disease-specific legislation or to provisions pertaining to people with disabilities, if patients undergo a disability assessment. Under the Economic Law of 2002, article 39, DPR 448/01, people with thalassaemia over 35 years of age and with at least 10 years of social insurance contributions are entitled to a monthly allowance of c. €500. Other disease-specific benefits include the coverage of expenses for transportation for patients that live far from their treating centre (valid in Sicily), the provision of a bi-monthly financial support for all the people with permanent damages due to unsafe blood transfusions or mandatory vaccination (according to Law 210/92), a tax reduction of 19% (as per the personal income tax legislation), a 19% reimbursement of healthcare expenses, tax reductions for the purchase of cars, computers, phones and tablets and additional leave days of parents taking their children to thalassaemia centres. A number of benefits are also provided based on disability-specific legislation and assessment. More specifically, a disability pension is provided if disability exceeds 67%, while parents of children with disabilities receive an allowance only if their income is below a given threshold. Early retirement and easier access in higher education are also possible based on the outcome of the disability assessment.
INDIA: In India, people with thalassaemia, sickle cell disease and haemophilia having a disability of 40% and above (“benchmark disability”) are considered disabled persons under the Rights of Persons with Disabilities Act (RPWD) of 2016 and are provided with a Disability Certificate that gives them access to numerous social benefits. These include the provision of a long-term allowance (of at least 2 years) to unemployed people with thalassaemia registered with Special Employment Exchange, a care-giver allowance to address high support needs; a comprehensive insurance scheme, incentives to employers in the private sector to ensure that at least 5% of their workers are disabled persons, facilitation of access to higher education institutions by reserving 5% of available positions to persons with benchmark disabilities. Moreover, people with haemoglobin disorders are given priority in attendance and treatment, loans at concessional rates including that of microcredit, allotment of agricultural land and housing also at concessional rates, access to developmental schemes and programmes and financial aid if they are facing cardiac, liver, endocrine complications, bone disease/ deformity/ osteopenia or are affected with Hepatitis B, C and/or HIV.
UNITED ARAB EMIRATES: In the United Arab Emirates, people with thalassaemia, Emirati nationals (irrespective of being patients or not), receive a monthly allowance from the Ministry of Community Development that varies between $1,500 – $ 2,000 (if patients are under the age of 18) and $3,000 – $5,000 (if patients are over the age of 18). They also receive support from the H.H Sheikh Sultan Bin Khalifa Al Nahyan Humanitarian & Scientific Foundation to either join the national bone marrow transplant programme, have access to job-specific training or find employment.
The quality of life of people with thalassaemia and other haemoglobin disorders depends on two major factors: i) the quality of medical care they receive, including access to multidisciplinary care; and ii) their access to social protection schemes that safeguard them from the impact of the social determinants of health to their health outcomes. It is thus evident that the two factors need to be present in harmony and in an equilibrium in a national setting in order to achieve the optimal well-being and successful social integration of patients and thus alleviate the medical, public health, social and economic burden of the disease. In developed countries where disease-specific social benefits have been implemented, in combination with high-quality medical care, life expectancy and quality of life of patients has been significantly improved. Higher percentages of patients live longer and more productive lives, receive higher education and raise families. On the contrary, in countries where patients have less access to comprehensive healthcare support and/or social benefits, patients and their families tend to struggle for covering basic needs, often enter into poverty and experience poor psychosocial outcomes.
World Health Organization (WHO), Social determinants of health https://www.who.int/health-topics/social-determinants-of-health
United Nations (2018). Report on the World Social Situation: Promoting Inclusion through Social Protection. United Nations: New York. ISBN 978-92-1-130340-7 https://www.un.org/development/desa/dspd/wp-content/uploads/sites/22/2018/06/rwss2018-full-advanced-copy.pdf
United Nations Convention on the Rights of Persons with Disabilities (2006) https://www.un.org/disabilities/documents/convention/convention_accessible_pdf.pdf
International Labour Organization (ILO), Social health protection https://www.ilo.org/secsoc/areas-of-work/policy-development-and-applied-research/social-health-protection/lang–en/index.htm
International Social Security Association (2019), Country Profiles https://ww1.issa.int/country-profiles
World Bank Group (2015). Assessing Disability in Working Age Population: A Paradigm Shift from Impairment and Functional Limitation to the Disability Approach http://documents1.worldbank.org/curated/en/272851468164970738/pdf/Disability-Assessment-Report-June-18-2015.pdf
Useful Policy Documents
|Alma-Ata Declaration (1978)||“V. Governments have a responsibility for the health of their people which can be fulfilled only by the provision of adequate health and social measures. A main social target of governments, international organizations and the whole world community in the coming decades should be the attainment by all peoples of the world by the year 2000 of a level of health that will permit them to lead a socially and economically productive life.”|
|World Health Assembly Resolution 58.23 (2005)||“The Fifty-eighth World Health Assembly URGES Member States (4) to take all necessary steps for the reduction of risk factors contributing to disabilities during pregnancy and childhood; and (6) to implement, as appropriate, family counselling programmes including premarital confidential testing for diseases such as anaemia and thalassemia along with prevention counselling for intra-family marriages;”|
|World Health Assembly Resolution 58.33 (2005)||“The Fifty-eighth World Health Assembly URGES Member States (4) to plan the transition to universal coverage of their citizens so as to contribute to meeting the needs of the population for health care and improving its quality, to reducing poverty, to attaining internationally agreed development goals, including those contained in the United Nations Millennium Declaration, and to achieving health for all”|
|United Nations Convention on the Rights of Persons with Disabilities (2006)||“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”
“Article 19: States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that: b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community”
|World Health Assembly Resolution 62.14 (2009)||The Sixty-second World Health Assembly URGES Member States (3) to take into account health equity in all national policies that address social determinants of health, and to consider developing and strengthening universal comprehensive social protection policies, including health promotion, disease prevention and health care, and promoting availability of and access to goods and services essential to health and well-being”|
|World Health Report 2010||“There are many ways to promote and sustain health. Some lie outside the confinesof the health sector. The circumstances in which people grow, live, work, and agestrongly influence how people live and die. Education, housing, food and employment all impact on health. Redressing inequalities in these will reduce inequalities in health.”|
|World Health Report 2013||“The goal of universal health coverage is to ensure that everyone can use the health services they need without risk of financial ruin or impoverishment. These services range from clinical care for individual patients to the public services that protect the health of whole populations, coming from both within and beyond the health sector.”|
|UNGA Resolution A/RES/67/81 (2012)||“The General Assembly, (4) invites Member States to adopt a multisectoral approach and to work on determinants of health within sectors including, as appropriate, through the health-in-all-policies approach, while taking into consideration the social, environmental and economic determinants of health, with a view to reducing health inequities and enabling sustainable development, and (14) recognizes that it is essential to take into consideration the needs of vulnerable segments of society, including the poorest and marginalized segments of the population, indigenous peoples and persons with disabilities, in accordance with the principle of social inclusion, in order to enhance their ability to realize their right to the enjoyment of the highest attainable standard of physical and mental health”|
|UNGA Resolution A/RES/70/1 (2015)||“We envisage a world free of poverty, hunger, disease and want, where all life can thrive. A world with equitable and universal access to quality education at all levels, to health care and social protection, where physical, mental and social well-being are assured.”
“23. We are committed to ending poverty in all its forms and dimensions, including by eradicating extreme poverty by 2030. All people must enjoy a basic standard of living, including through social protection systems.”
“26. To promote physical and mental health and well-being, and to extend life expectancy for all, we must achieve universal health coverage and access to quality health care. No one must be left behind.”
|UN Political Declaration of the High-level Meeting on Universal Health Coverage (2019)||“10. Recognize the need to tackle health inequities and inequalities within and among countries through political commitment, policies and international cooperation including those that address social, economic and environmental and other determinants of health”
“14. Recognize the fundamental importance of equity, social justice and social protection mechanisms as well as the elimination of the root causes of discrimination and stigma in health-care settings to ensure universal and equitable access to quality health services without financial hardship for all people, particularly for those who are vulnerable or in vulnerable situations”
|International Labor Organization Social Health Protection Principles (2020)||“The lack of affordable quality health care and income security in case of sickness for the majority of the world’s population creates a risk of impoverishment, with greater impact on the most vulnerable.”“Social health protection principles provide a rights-based approach to achieve universal population coverage”|
|WHO Executive Board Report EB148/24 (2021)||“3. The world has seen considerable health gains over the last century, but their distribution is vastly unequal. Inequities in many health outcomes exist both within and between countries.”
“13. Commitment at global, national and subnational levels is essential to tackle health inequities and their causes.”
 Artiga, Samantha, and Elizabeth Hinton. 2018. “Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity.” The Henry J. Kaiser Family Foundation. May 10