Pope Calls for Support to Chronic and Rare Disease Patients

• Rare or orphan disease is any disease that affects a small percentage of population
• Pope Francis in a conference hosted by Vatican spoke out of empathy for patients with rare diseases
• Globally around 350 million people are estimated to live with a rare disease

In a progressive and heart-warming move, Pope Francis spoke out of empathy and concern for patients with chronic and rare diseases. In a conference hosted by the Vatican in April 2016 titled, “Cellular Horizons: How Science, Technology, Information and Communication Will Impact Society,” the Pope called for more empathy towards patients especially with rare and incurable diseases. The conference was co-hosted by the Pontifical Council for Culture and the U.S.-based Stem for Life Foundation, a non-profit based in New York that promotes healing treatments with the use of adult stem cells. The Pope exhorted the participants that we must create a culture of care for such patients who otherwise feel neglected. While there may not yet be a cure, the Pope said there is no reason not to provide care and concern to such patients. He said that the complexities of rare diseases along with social neglect made such patients feel “abandoned and neglected.”

He expressed his views that all patients regardless of culture and religion must have equal access to healthcare and treatment. The Pope noted that the philosophy of “profit” prevailed over “care” and patients with rare diseases were seen as economic burdens. He said that this principle of profit was against the moral philosophy of upholding the dignity and right to live of every human being. The Pope raised the significant issue of the immense suffering at all levels for patients and their families.

Much of the conference was devoted to rare diseases and the prospects of using adult stem cells for curative. The meeting saw a diverse audience as scientists, medical researchers, doctors, patients, religious leaders and government officials gathered to share their views. US Vice-president, Joe Biden was present as a VIP guest at the conference. Joe’s son Beau succumbed to brain cancer in 2015 and Joe was at the conference as part of his campaign tour to promote cures for cancers.

Rare Diseases Facts and Figures

• Currently there are 7000 rare diseases with newer ones being discovered each year.
• 80% of all rare diseases are genetic and usually present at birth or a little while after birth
• Rare diseases may be single-gene disorders like thalassemia and sickle cell anemia or multiple-gene disorders like hereditary multiple osteochondromas
• Almost 50% of those affected are children and 30% of these children will not live beyond the age of 5
• It takes nearly 7 years to diagnose a rare disease
• 95% of rare diseases do not have a cure

The Pope emphasized the creation of interdisciplinary spaces between medical science and technology and human concerns to pay attention to moral issues. He called for investment in education and increasing funding for rare disease research and cures. Significantly, the Pope raised the vital issue of legislations as part of access to healthcare for patients with rare diseases.

The conference and the Pope’s forward looking statements and suggestions have generated hope among patients and families with rare diseases. The conference was a rare confluence of religion and science meeting to solve the world’s critical problems especially disease and suffering.

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References:

1. Pope calls for "empathy" in treating people with rare diseases - (http://www.alpha1.org/Healthcare-Providers/Education/News/ArtMID/7019/ArticleID/6937/Pope-calls-for-empathy-in-treating-people-with-rare-diseases)
2. Pope Francis on rare diseases: patients should not feel abandoned - (http://www.pagadiandiocese.org/2016/04/29/pope-francis-on-rare-diseases-patients-should-not-feel-abandoned/)
3. About GARD - (https://rarediseases.info.nih.gov/)

Source-Medindia