Vatican urges subsidiarity
and solidarity in care for persons with rare diseases
 |
| Aposter for Rare Disease Day, Feb 29, 2020 |
The last day of February is observed as Rare Disease Day. It
is estimated that over 300 million people in the world suffer from over 6,000
identified rare diseases.
By Robin Gomes
The Vatican is urging the international community to
implement the Catholic social principles of subsidiarity and solidarity in
healthcare policies in order to provide specific support and care for patients
with rare diseases and their families, and make them feel part of society.
Cardinal Peter Turkson, the Prefect of the Vatican Dicastery
for Promoting Integral Human Development, made the call on Saturday in a
message for Rare Disease Day, that is observed on the last day of
February.
European Organisation for Rare Diseases (EURORDIS), a
non-governmental organization, established the annual observance in 2008 to
raise awareness for unknown or overlooked illnesses.
According to the NGO, there are over 300 million people in
the world suffering from over 6,000 identified rare diseases.
Pope Francis
Pope Francis also called for support for persons with rare
diseases. In a post on his @Pontifex Twitter account on Saturday, he
wrote: “#RareDiseaseDay offers us the opportunity to together care for our
brothers and sisters who are ill, to integrate research, medical care, and
social assistance so that they might enjoy equal opportunities and lead a full
life.”
Rare diseases in poor countries
In his message, Cardinal Turkson noted that often people
with rare diseases and their families live in stigma, loneliness and a sense of
helplessness, often exacerbated by difficulties in getting specific treatment
and appropriate care. This situation is even more serious in all those
countries where the health system is more vulnerable.
Stressing that the fundamental right to health and care is a
question of justice, the cardinal said that the unequal distribution of
economic resources, especially in low-income countries, does not guarantee the
health justice that protects the dignity and health of every person, especially
the neediest and poorest.
The pharmaceutical industry
For this reason, Cardinal Turkson said, the scientific
knowledge and research of the pharmaceutical industries, even if they adhere to
their own laws, such as the protection of intellectual property and fair profit
as a support for innovation, must find appropriate agreements that grant the
right to diagnosis and access to essential therapies, especially in the case of
rare diseases.
Subsidiarity and solidarity
“The principles of subsidiarity and solidarity,” Cardinal
Turkson said, “must inspire the international community as well as health
policies to ensure that efficient health systems, equitable access to diagnosis
and treatment and specific support and care for patients and their families are
guaranteed for all, particularly the most vulnerable populations.”
In the Catholic Church’s social teaching the principle of
subsidiarity stipulates that human affairs and their decisions be handled at
the level of the affected persons, rather than by a central authority.
Inclusiveness
Noting that the impact of rare diseases on the daily life of
families is disruptive from a psychological, emotional, physical and economic
point of view, Cardinal Turkson urged that health and social care include all
aspects of family life and involve the various actors in a country in order to
meet the needs of persons with rare diseases. He particularly urged for
“support, solicitude, attention ... in short, love".
He said it would be ideal that alongside family members,
health, social and pastoral workers and volunteers, work in a spirit of
fraternity, to take care of persons with rare diseases, integrating medical
care with social activities and commitments that make them feel a dynamic part
of society.
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