COVID-19 pandemic is a health emergency involving all the world and the rare disease community is not excluded!
One of the main areas of interest of Fondazione Gianni Benzi is the inherited haemoglobinopathies one, such as Thalassaemia and Sickle Cell Disease. In this field, Fondazione is carrying out many research activities and initiatives, involving patients as well, in close collaboration with institutions experienced in the field like Fondazione Italiana Leonardo Giambrone. Considering the current health emergency, Rossella Conte, researcher of Fondazione Benzi, who has always been involved in activities related to the haemoglobinopathies, underlines that among the patients exposed to major risks there are those treated with immunosuppressive drugs and those affected by respiratory diseases, but most of all those who have one or more complications affecting several organs and systems. Among them, there are patients with rare inherited haemoglobinopathies (like Sickle Cell Disease and Thalassemia) in need of blood transfusions, who can often have additional complications that expose them to a major risk. Until now, for these patients we do not have a solid experience on the infection and any declaration/prevision is just a hypothesis. Currently, the infection effects are not known in these patients. It is fair to consider that patients with low iron overload and with few or none complications are less exposed to a worse clinical outcome than the general population. However, patients (with Thalassemia or Sickle Cell Disease) who have complications might experience worse disease outcomes. Therefore, Rossella Conte underlines the necessity to protect all the patients with haemoglobinopathies providing them with a continuous treatment with blood transfusions and iron chelators, ensuring them their right to life saving treatment, now threatened by the serious difficulty experienced by donors as well, due to the infection!
It is relevant to remind that there is no evidence that the virus can be transmitted through blood!
Considering that we do not know how long we will have to face with COVID-19, we have to get prepared to the future! We need to know more!
To this end, we report that to fight against the infection, the Thalassaemia International Federation (TIF) asks all the healthcare professionals to fill in a survey that will contribute to an international registry, aimed to collect clinical data on patients with Thalassaemia and Sickle Cell Disease, who have been affected by the virus SARS-CoV-2. Detailed observations and reports, coming from this data, will enable to have more available information and to act with more precautions and/or treatments as soon as possible.
There are two available questionnaires for Thalassaemic patients and Sickle Cell Disease patients respectively to the following links:
Moreover, TIF has developed informational material, addressed to patients and healthcare professionals, focused on the coronavirus in relation to Haemoglobin disorders, such as the ‘’COVID-19 Pandemic & Haemoglobin Disorders” Leaflet, which has already been translated in multiple languages, the ‘’TIF-proposed Haemoglobinopathy Patients Pathway during the COVID-19 Pandemic’’, a ‘’Health and Nutrition Short Guide’’, as well as several other interesting resources that can be found on TIF website. The documents are constantly updated according to the emergency advancements.