Positionspapiere
TIF beteiligt sich aktiv an der Entwicklung von Positionspapieren zu Schlüsselthemen, die Patienten mit Thalassämie betreffen, um ihre Lebensqualität und ihren Zugang zur Behandlung zu ermöglichen und zu verbessern.
Jedes Positionspapier wird nach intensiven Recherchen und Beratungen mit unseren Mitgliedern weltweit erarbeitet. Nach Fertigstellung werden die Positionspapiere an die wichtigsten Akteure und Gesundheitsbehörden auf nationaler, regionaler und internationaler Ebene verteilt, um die erforderlichen Maßnahmen zur Lösung des Problems zu ergreifen.
Darüber hinaus werden sie im Rahmen des Globalen Ärztenetzwerks der TIF verbreitet und vor allem an Thalassämieverbände auf der ganzen Welt verteilt, um Patientenvertreter zu ermutigen, einen produktiven Dialog mit ihren nationalen Gesundheitsbehörden, der medizinischen Gemeinschaft, Forschungsinstituten und der Industrie zu entwickeln und sich für die Umsetzung des vorliegenden Positionspapiers einzusetzen.
Siehe auch:
Wichtige Definitionen in den für TIF relevanten Bereichen
Bericht: Die Verwendung von Generika bei Thalassämie TIF’s positions in a nutshell
We invite you to read our Position Papers found below:
The Thalassaemia International Federation (TIF) welcomes the European Commission's proposal on the new EU Regulation for Blood, Tissues and Cells as a highly significant policy step towards improving the protection and safety of blood donors and recipients within and across the EU territory and increasing patient access to innovative transfusion and transplant therapies.
The Thalassaemia International Federation (TIF) is expressing its grave disappointment over the recent announcement of Bluebird Bio, concerning the “wind-down” of its operations in Europe and the exclusive disposal of its gene therapy for beta thalassaemia (Zynteglo™) in the United States.
In this Position Statement, TIF wishes to address and clarify to the extent possible basic questions that oftentimes concern blood donors with regard to Covid-19 vaccination and blood donation.
Gene therapy has been a long-awaited scientific development for thalassaemia patients and has given
hope, optimism, and opened new horizons. It is imperative for ground-breaking scientific advances and innovative therapies to be sufficiently recognized by national health authorities in conjunction with not only an understanding of the impact of the disease on the daily lives of patients and their families but also in regards to the actual cost-of-illness for healthcare providers.
This document has been drafted in the context of the activities of the TIF multiannual programme (2018-2021), “Thalassaemia In Action” (THALIA). Its aim is to provide an overview of the multiple factors that impact the lives of people with Thalassemia and Sickle Cell Disease living in the European Union, and highlight specific recommendations addressed to policymakers in order to address key challenges, unmet needs and policy gaps and ultimately improve the patients’ health and lives.
In view of the plans made by national health authorities in every country across the world for the widespread vaccination of individuals against the SARS-CoV-2 virus, TIF herein presents the Federation’s position about the vaccination of patients with haemoglobin disorders against SARS-CoV-2.
Many patients with haemoglobinopathies, including thalassaemia and sickle cell disease, are at increased risk of developing severe complications from the coronavirus disease 2019 (COVID‐19). In this Position Statement, TIF reflects on general considerations and levels of risk for patients, the adaptation of haemoglobinopathy care, the blood transfusions safety and the blood supply challenges.
The safety concerns linked to the use of DEHP plasticizers, a manufactured chemical common in blood bags and PVC intravenous fluid sets, has been explored, and even questioned, by many in recent years. TIF's Statement follows the publication of the guidelines prepared by the European Commission’s Scientific Committee on Health, Environment and Emerging Risks (SCHEER) in June 2019 and the consequent decision to gradually withdraw products made with this plasticizer from 2023, and replace it with alternative plasticizers.
Through this Position Statement, TIF encourages National Health Authorities of every country across every region of the world, in the context of their national fight against the COVID-19 pandemic, to promote and adopt a series of policies in relation to the protection of the health and lives of individuals with haemoglobin disorders.
Zusätzlich zu dem Schwerpunkt, den die TIF in ihrem Weiterbildungsprogramm auf das Thema Blut gelegt hat, hat die Föderation ein Positionspapier mit dem Titel „Gewährleistung der Blutsicherheit“ erarbeitet, veröffentlicht und verteilt. Das vorliegende Positionspapier ist Teil einer Sammlung ähnlicher Papiere, die die TIF regelmäßig veröffentlicht, um ihre Position zu Themen, die für die effektive Behandlung von Thalassämie und damit für die Gesundheit und Lebensqualität von Patienten weltweit von entscheidender Bedeutung sind, zu verdeutlichen.
- 1
- 2