The interim prefect of the Dicastery for Integral Human Development in the Vatican, Cardinal Michael Czerny, encouraged eradicate the “pandemic” of selfishness to fight against rare diseases that affect some 300 million people around the world, on the occasion of the 15th Rare Diseases Day that is celebrated on February 28.
“The negative impact of living with a rare disease is felt throughout life and in all aspects of people with this type of disease and their families,” says the Cardinal in his message published Monday by the Vatican.
“Theirs is a constant struggle to get a correct diagnosis, to access appropriate health care and services, as well as often very expensive therapies.”
Cardinal Czerny regrets in his message that “so-called orphan drugs”, that is, drugs that are not developed by the pharmaceutical industry for economic reasons but that respond to public health needs, “have a limited market and some pharmaceutical companies do not invest in the production of many of these because they do not guarantee an adequate economic return”.
The Cardinal warns that in the poorest countries, the negative impact “is even stronger because the scarce resources and investments in research, diagnosis and therapies exclude access to treatment for many patients with rare diseases, poor and indigent.”
In that sense, “a radical and global rethinking of the political, economic and health systems is needed to guarantee the research and development of new medicines and to have effective treatments for all, and this objective can only be achieved if first the pandemic of selfishness, individual and social, is eradicated to promote a culture of welcome, solidarity and common good”.
The interim prefect also points out that in addition to these problems, people with rare diseases face “discrimination, stigma and even social exclusion. It is difficult to include and integrate into educational systems; parents struggle to find suitable schools willing to welcome their children with a rare disease”, since these usually occur in “pediatric age because most of them are of genetic origin”.
“Often, the families of people with a rare disease live in situations of great economic difficulty; the higher costs associated with care, permanent assistance, rehabilitation therapies lead them to be subject to a greater risk of impoverishment and isolation and social and economic exclusion”, he continues.
Cardinal Czerny then refers to the various problems that affect these people in the world of work, and recalls that they too have the right to work.
“Solutions must be sought that help build a new future of work that is based on decent and dignified working conditions and that promotes the common good,” he stresses.
Bruno Dallapiccola, geneticist, scientific director of the Bambino Gesù Children’s Hospital in Rome, explains in Vatican News that there are currently more than 10,000 known rare diseases.
85% of these diseases are very rare, so “it is difficult to find an expert, a competent doctor, a point of reference. There is a deep loneliness of these patients”.
“In this field, medicine can better realize the concept of medical art: the professional who works with these patients has no reference points and truly becomes an artist of medical science.”
The expert specifies that in these cases, “information is a fundamental point. In accordance with this objective, we have been developing in Italy for twenty years the interface of the world’s largest database on rare diseases, Orphanet, which is based at the Hospital Bambino Gesù”.
“This database offers up-to-date information on rare diseases and the state of research,” he explains.