Equity and rare diseases: a necessary debate

When we want to be familiar with the fascinating universe of Public Health, we need to acquire a new repertoire of strange but fundamental words if our goal is to promote social justice and the purpose of “leaving no one behind.” A keyword in our journey toward full citizenship is “equity.”

What is equity?

Equity is one of the doctrinal principles of the Unified Health System (SUS), along with universality and comprehensiveness. It is directly related to the concepts of equality and justice.

You must have already seen the principle of equity in action when looking for a hospital implementing risk classification and realizing that care is defined according to a combination of the order of arrival, urgency, and severity. The most serious are treated first. Thus, the aim is to offer more to those who need it most and less to those who require less care.

The principle of equity (which should also guide SUS policies and the rest of Public Health in this or that country) recognizes differences in living and health conditions and people’s needs.

Relevant numbers in rare diseases

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  • Affect between 3.5% to 5.9% of the population in their lifetime
  • 72% of rare diseases are of genetic origin
  • 70% of rare diseases start in childhood
  • There is no cure for most illnesses and few treatments are available.

What does equity mean for people living with rare diseases?

For people living with a rare disease, equity means:

  • Social opportunity
  • Non-discrimination in education
  • Equal access to health services, diagnosis and treatment, and
  • Social care

Until 2030 (at least), we intend to strike the chord of promoting equity for people with a rare disease and their families.

Three hundred million people worldwide face common challenges in their everyday lives. It is a historically neglected population significantly affected by stigma, discrimination, and social marginalization, both in their closest circles and in society.

It is estimated that there are over 6,000 rare chronic, progressive, degenerative, disabling, and often life-threatening diseases. Due to the rarity of each condition (when taken individually), and the very dispersed population affected by it, it is difficult to find a doctor who understands them, and information about them is scarce.

When they use health systems prepared initially to deal with common illnesses, these people face severe difficulties in diagnosis, care, and treatment.

As if all this were not enough, a survey by the Eurobarometer found that 94% of the study participants faced difficulties in accessing higher education, thus reducing their professional chances.

For people living with rare diseases and their families to achieve the desired social inclusion, it is necessary to give them access to holistic care, which covers their wide range of social, health, and daily needs.

In this sense, the 2030 Agenda and its Sustainable Development Goals (SDGs), which, in Academia de Patients 2030, have been highlighted, offer an integral approach to meet the broad spectrum of needs of people living with a rare disease.

If we address the needs of these people, we will be achieving the goals and objectives of the 2030 Agenda and its commitment to “leave no one behind.”

ODS da Agenda 2030 relacionados a este texto

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