«We must not forget that the fundamental right to health and to care has to do with the value of justice and that the unequal distribution of the economic resources, especially in low-income countries, does not make it possible to guarantee a health justice that protects the dignity and the health of every person, especially the neediest and poorest,» said the Prefect of the Dicastery for the Service of Integral Human Development, H.E. Cardinal Peter Kodwo Appiah Turkson, on the occasion of the 13th Day of Rare Diseases, observed February 29, 2020.
«The principles of subsidiarity and of solidarity must inspire the International Community as well as health policies, so that all, particularly the most vulnerable populations are guaranteed efficient health systems, fair access to diagnosis and to therapies, as well as specific support and assistance to the sick and their families,» the Cardinal said. «It would really be good if all together, next to the families, the health, social and pastoral workers and the volunteers, we took care of our brothers and sisters affected by a rare disease in a spirit of fraternity, integrating the medical care with social activities and commitments that make them feel a dynamic part of the society.»
* * *
Cardinal Peter K.A. Turkson’s Message
To the Presidents of the Episcopal Conferences,
To the Bishops in Charge of Health Pastoral Ministry
To the Men and Women Religious
To the Socio-Health and Pastoral Workers
To the Volunteers and to All Persons of Good Will,
And, above all, Dear Brothers and Sisters Affected by Rare Diseases and to their Families,
This year the Day of Rare Diseases puts the accent on fairness and on more equitable conditions for persons affected by these pathologies. There are 300 million people in the world with a rare disease, a considerable number that can’t be ignored and that deserves attention.
Rare diseases are often difficult to diagnose and, in the majority, the sick affected by these pathologies and their families live with stigma, in solitude and with a sense of impotence, often exasperated by the difficulties to get specific treatment for the rare pathology and adequate assistance. Unfortunately, this situation is perceived even graver in all countries in which the health system is more vulnerable.
We must not forget that the fundamental right to health and to care has to do with the value of justice and that the unequal distribution of the economic resources, especially in low-income countries, does not make it possible to guarantee a health justice that protects the dignity and the health of every person, especially the neediest and poorest.
Scientific research plays a substantial role in rare diseases to improve the lives of the sick, not only in singling out the pathology and in providing the available therapy but also in indicating the most appropriate assistance. At the same time, scientific research is in need of the participation of the sick to obtain significant results, geared to their needs. Therefore, scientific knowledge and the research of Pharmaceutical Industries, even if they hold to their own laws, such as the protection of intellectual property and a fair profit as support of innovation, must find appropriate ways with the right to diagnosis and to access to the essential therapies, especially in the case of rare diseases.[1]
The principles of subsidiarity and of solidarity must inspire the International Community as well as health policies, so that all, particularly the most vulnerable populations are guaranteed efficient health systems, fair access to diagnosis and to therapies, as well as specific support and assistance to the sick and their families.[2] The impact of rare diseases on the daily life of the family nuclei is disruptive from a psychic, emotional, physical and economic point of view. Often they compensate for the absence or lack of health assistance and social assistance. In fact, a rare disease involves all the aspects of the life of the family: the problem of the disease must not only be addressed but there must be concern for all the other aspects of life such as, for instance, food, rehabilitation and sports activity, organization of free time.
It’s important to study activity in synergy with various actors present on the territory, who can assess the potential of rare diseases in as much as, sometimes, the sick person can feel a lack of humanity precisely because “in the sickness, the person feels compromised not only in his/her physical integrity but also in the relational, intellective, affective, and spiritual dimensions and therefore expects, in addition to therapies, support, and solicitude, attention . . . in short, love.”[3]
It would really be good if all together, next to the families, the health, social and pastoral workers and the volunteers, we took care of our brothers and sisters affected by a rare disease in a spirit of fraternity, integrating the medical care with social activities and commitments that make them feel a dynamic part of the society.
I entrust to Mary, Salus Infirmorum all those suffering from rare diseases so that She helps us to be attentive to the needs of one another and to be able to give with a generous heart.
Cardinal Peter Kodwo Appiah Turkson
Prefect
[1] Pontifical Council for Health Workers, New Charter of Health Workers, 2016, Libreria Editrice Vaticana, n. 92.
[2] Ibid., nn. 141-142.
[3] Francis, Message for the World Day of the Sick, February 11, 2020.
