On the occasion of the 13th Day of Rare Diseases, observed on February 29, Cardinal Peter Kodwo Appiah Turkson, Prefect of the Dicastery for the Service of Integral Human Development, made known his Message, which this year emphasizes “fairness and more just conditions for people affected by these diseases.”
This Day was established to create awareness about rare diseases and the impact they have on people’s life. At present, there are 6,000 rare diseases and over 300 million people worldwide that suffer from one of them.
In his Message, Cardinal Turkson points out that the number of those affected makes it patent that it’s a topic that must not be ignored and “deserves attention.” These diseases, he says, “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.” This situation is also aggravated “by the difficulties to get specific treatment and adequate assistance for the rare pathology.”
“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 the poorest,” says the Cardinal.
Importance of Research
The Prefect also points out that scientific research has an essential role to play, which needs the participation of the sick to obtain significant results geared to their needs.”
“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,” he stresses, adding that “a rare disease involves all the aspect of 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.
Diagnosis, Treatment, and Support
Cardinal Turkson also reminds that the principles of subsidiarity and of solidarity must inspire the International Community as well as health policies to ensure that all, “particularly the most vulnerable populations are guaranteed efficient health system, fair access to diagnosis and to therapies, as well as specific support and assistance to the sick and their families.”
The Message goes on to stress that it’s “important to study activities in synergy with various actors present on the territory, which can improve the potential of patients with rare diseases, because “sometimes the sick person can feel a lack of humanity.”
Pope Francis’ Words
Finally, the Cardinal refers to the Pontiff’s words for the 2020 World Day of the Sick: “In sickness, the person feels compromised not only in his/her physical integrity but also in the relational, intellective, affective <and> spiritual dimension and, therefore, expects, in addition to therapies, support, and solicitude, attention . . . in short, love.”
On this day, Pope Francis wrote the following Tweet: “The#DayofRareDiseases offers us, all together, the occasion to take care of our brothers and sisters suffering them, integrating research, medical treatments, and social assistance so that they have equal opportunities and can live a full life.”