The president-elect, Luiz Inácio Lula da Silva, will return to some themes linked to the Sustainable Development Goals (SDGs) of the 2030 Agenda. It is what can be seen when examining his government plan. O documento, de 21 páginas, contains guidelines for the “Program for the Reconstruction and Transformation of Brazil Lula Alckmin 2023-2026”. It is excellent news for Brazilians, particularly those with rare diseases, their families, and supporters.
The SDGs are 17 goals developed by the UN to improve life on the planet. The themes cover human life, animal life, the preservation of natural assets, and the sustainable use of all these resources. The Sustainable Development Goals are the guiding principles of the 2030 Agenda and serve as guides for member countries to put them into practice. Brazil is one of the founding members of the United Nations.
In his government plan, Lula assumes commitments to the “defense of equality, democracy, sovereignty, and peace; with sustainable economic development with stability; with social justice and inclusion with rights, work, employment, income, and food security; with human rights, culture and the recognition of diversity; with social, environmental and economic sustainability and with the confrontation of climate changes; and with the Brazilian people.”
By sanctioning the Plurianual Plan (PPA) of the Union, in December 2019, President Jair Bolsonaro vetoed the UN (United Nations) 2030 Agenda from 2020 to 2023.
Check out the UN Agenda 2030 SDGs, of particular interest to people with rare diseases and their families, which appear in Lula’s government plan.
Created in June 2021, Academia de Pacientes 2030 is the first national virtual platform to link Human Rights, Agenda 2030, and Rare Diseases.
Demand your representatives in Congress for the government’s role in these SDGs!
SDG 1: No Poverty
People with rare diseases are often trapped in a vicious circle of vulnerability and poverty due to exclusion from health and education systems and the labor market.
Poverty is usually associated with a lack of health, education, food, knowledge, and many other things that make the difference between living and simply surviving.
People living with a rare disease are confronted daily (and often from birth) with obstacles such as exclusion from health and education systems. It leads to lower employment rates and traps them in a vicious circle of vulnerability and poverty.
By supporting people living with a rare disease, we are helping the most vulnerable of the vulnerable and thus taking a further step towards eradicating poverty in all its forms.
SDG 1 in Lula’s government plan
SDG 3: Good health and Well-being
Achieving universal health coverage requires meeting the needs of people with rare diseases, who need more and better medicines, proper diagnosis and lifelong care, social support, and access to assistive technologies.
The United Nations has emphasized the need to:
- Ending preventable deaths of newborns and children under five
- End preventable mortality caused by non-communicable diseases.
- Achieve universal health coverage support.
- Drug research and development
The burden of rare diseases is considerable, with an estimated 350 million people affected worldwide. It is in the same range as prominent and more “visible” non-communicable diseases such as diabetes.
By fighting for the right to adequate diagnosis and treatment of patients with a rare disease, we help the current generation and the future since most rare diseases are genetic and, therefore, preventable if adequately invested in resources.
SDG 3 in Lula’s government plan
SDG 4 : Quality Education*
Fifty percent of all rare diseases affect children, who often face great difficulties in attending school due to inaccessible facilities and unadapted teaching methods, but also due to prejudice, stigma, and discrimination.
A quality life starts with a quality education. The United Nations has made advances in education in recent decades, reducing the out-of-school rate by more than 50% in 15 years. However, much more needs to be done regarding inclusion, closing gender gaps, and adapting facilities for people with disabilities.
We need to spread knowledge about rare diseases to teachers, educators, and the next generation to foster a culture of acceptance and a world where every child has a chance to learn.
★ Distributed at various points in the Government Plan
SDG 5: Gender Equality
The responsibility for caring for people with rare diseases falls disproportionately on women, particularly mothers, as rare diseases predominantly affect young children.
Their time and efforts to provide unpaid care and housework, as well as the burden this places on their careers and activities (even forcing them to leave their jobs, with straightforward implications for their future income, pensions, and social payments), as well as their economic independence in general), is often underestimated and unrecognized.
Enshrined in the Charter of the United Nations is the principle of equality between men and women. Sadly, discrimination against women and girls remains an issue that needs a stern response.
Research proves that women living with a rare disease face more rejection in seeking a diagnosis, and their pain is less seriously considered than that of men.
But not only that, when a family member is affected by a rare disease, the primary caregiver role is more often assumed by the mother, leading to a standstill in professional life and inducing high levels of stress and physical and emotional exhaustion.
SDG 5 in Lula’s government plan
“Brazil will not be the country we want as long as women continue to be discriminated against and subjected to violence because they are women. The Brazilian State must ensure the full protection of women’s human dignity and develop public policies to prevent violence and guarantee their lives. Let’s build a country that walks towards equal rights, equal wages for equal work in all professions, and the promotion of women in science, the arts, political representation, public management, and entrepreneurship”. (Item 36 of the Government Plan)
SDG 8: Decent Work and Economic Growth
People with rare diseases and disabilities are often marginalized from the labor market not only because of prejudice, stigma, and discrimination but also because of a lack of accessible facilities, flexible working hours, and adapted roles.
SDG 8 in Lula’s government plan
“O novo governo irá propor, a partir de um amplo debate e negociação, uma nova legislação trabalhista de extensa proteção social a todas as formas de ocupação, de emprego e de relação de trabalho, com especial atenção aos autônomos, aos que trabalham por conta própria, trabalhadores e trabalhadoras domésticas, teletrabalho e trabalhadores em home office, mediados por aplicativos e plataformas, revogando os marcos regressivos da atual legislação trabalhista, agravados pela última reforma e reestabelecendo o acesso gratuito à justiça do trabalho”. (Ponto 13 do Plano de Governo)
SDG 9 : Industry, innovation and infrastructure*
With about a few hundred therapies developed against nearly 7,000 cataloged diseases, the need to invest in Research & Development, health technologies, and diagnostic tools for people with rare diseases continues to be immense.
Accessibility to infrastructure must also be improved to enable genuine inclusion in society.
★ Distributed at various points in the Government Plan
SDG 10: Reduced Inequalities
People with rare diseases remain a marginalized and invisible, albeit statistically significant, population, with nearly 300 million worldwide suffering from discrimination in health, work, and political inclusion – all prime examples of concrete inequalities that must be addressed in the spirit of SDG 10.
The life-threatening urgency imposed on people with rare diseases to participate in research and clinical trials can also occasionally compromise their right to privacy and adequate protection of their personal data and health records.
The aim is to empower and promote the social, economic, and political inclusion of all, regardless of age, gender, disability, race, ethnicity, origin, religion, or financial or other status. And to do that, discriminatory laws, policies, and practices must be eliminated.
People with rare diseases tend to remain a marginalized and invisible population, with little information about their illnesses and very few treatment options. They suffer inequalities in access to health services and treatment and in the prices they must pay due to their social status or country of origin.
SDG 10 in Lula’s government plan
“We will propose a solidary, fair, and sustainable tax reform, which simplifies taxes, in which the poor pay less and the rich pay more by ensuring tax progressivity, preserving the funding of the welfare state, restoring federal balance, contemplating the transition to an ecologically sustainable economy and improving taxation on international trade, and progressively exempting products with greater added value and embedded technology. We also want to correct a mechanism that historically transfers income from the poorest layers to the highest income layers of society: tax evasion” (Point 53 of the Government Plan).
“We are going to make the wealthy pay income tax, using the resources collected to invest intelligently in programs and projects with a high capacity to induce growth, promote equality and generate productivity gains” (Point 54 of the Government Plan)