Petition update

The Patient Perspective: A Matter of Minutes

Swiss Society for Porphyria -

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.

Keep fighting for people power!

Politicians and rich CEOs shouldn't make all the decisions. Today we ask you to help keep free and independent. Our job as a public benefit company is to help petitions like this one fight back and get heard. If everyone who saw this chipped in monthly we'd secure's future today. Help us hold the powerful to account. Can you spare a minute to become a member today?

I'll power Change with $5 monthlyPayment method


Please enter a comment.

We were unable to post your comment. Please try again.