Petition update

The Patient Perspective: A Matter of Minutes

Swiss Society for Porphyria - www.porphyria.ch

Dec 1, 2019 — 

The Patient, the scientific journal dedicated to patient-centered outcomes research, has published a commentary authored by Rocco Falchetto, describing how patient input can contribute to medical product research and development processes, regulatory reviews, health technology assessments and reimbursement decision making. The article builds directly from Falchetto’s presentation in the symposium, “Patient preferences in the medical treatment lifecycle” at the 10th Meeting of the International Academy of Health Preference Research (IAHPR) in Basel, Switzerland, on the 13th of July 2019. It focuses on the arduous years-long patient journey to access afamelanotide, illustrates challenges and opportunities in the inclusion of the patient voice in the lifecylce of medicines, and calls for a stronger integration of the patient perspective in health systems’ decision-making processes.

We look forward to the article contributing to raising awareness on the urgent need for a full integration of the perspective of patients in decisions affecting their health and well-being as well as to a better understanding of EPP and the benefits of afamelanotide. As Falchetto concludes in his article, we hope that skeptical decision makers will reconsider their views on the value of this life-changing treatment, giving those who suffer from EPP a second chance to finally step out from the shadows and into life as fully productive and engaged members of society.


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