ERN-EuroBloodNet and EURORDIS working for the establishment of the European Network of Sickle Cell Disease Patients Organizations
Italy, France, Spain and Portugal, the first countries with stablished National Representatives
The ERN-EuroBloodNet, in collaboration with EURORDIS, is establishing the European Network of Sickle Cell Disease (SCD) Patients Organizations: a bottom-up umbrella network of national and local organizations of SCD patients' advocates, whose objective is to give a strong representation of the disease and make its needs visible at European level.
Two or more SCD Patients' Representatives, who are elected on behalf of all the national patients' organizations, would represent each European Member State. Among all them, one will would become ePAG for the ERN-EuroBloodNet.
The ERN-EuroBloodNet has already identified SCD National Representatives for Italy, France, Spain and Portugal.
We have raised three questions to the already elected national representatives. Their answers are included in the following interview:
Question 1: What do you think it is needed to be implemented at National level for improving SCD patients' quality of life or patients' management?
As a patient I think that is necessary to improve the quality of care of patients, not only in the childhood, because is necessary in other ages.
Antonio Arenas García - ASAFE (Asociación Española Anemia Falciforme, Spain)
Earlier actions are needed. On one hand the awareness must start as soon as possible. For example, an educational program shaped on girls' and boys' needs, which guide them through their infancy and adolescence in order to become adults aware of their body and health. Moreover, the clinical analysis in hemoglobinopathies have to be done since young ages.
Décio Temporário - APPDH (Associação Portuguesa de País e Doentes com Hemoglobinopatias, Portugal)
I would first prioritize to include SCD in the newborn bloodspot screening as hemoglobinopathy and as a recognized disability in the National Table of Disabilities. Secondarily to create a national registry of hemoglobinopathy patients. Those interventions would allow for accurate statistics when approaching the Government public and private entities, and international organizations to submit recommendations on improvements to existing policies and strategies for hemoglobinopathies.
Miriam Freire - APPDH (Associação Portuguesa de País e Doentes com Hemoglobinopatias, Portugal)
Question 2: What does it mean for you being part of a European Group? Which are the first actions do you imagine in the group?
For Spanish patients it is already a success to have a national association. Having European representation, becomes an essential task. From my point of view, the first actions of the group, must be to design a roadmap including objectives to give visibility to SCD, to improve the quality of life of patients and to encourage the research for the development of new drugs and to find a cure for the disease.
Antonio Arenas García - ASAFE (Asociación Española Anemia Falciforme, Spain)
It means working together to make sure our voices a national and European level. It can only be positive to exchange with other people living in different countries and hear about their experiences. The first actions could be to make a diagnosis of SCD in every country represented, see how it is treated, get the best out of it as an example to follow and them start working on some "guideline" we could all use in all the countries. Only after that, we could advocate at a political level in Europe.
Dianaba BA - Fédération des Malades Dreépanocytaires et Thalassémiques SOS GLOBI, France
Question 3: How do you think patients experience could actively contribute to SCD's cause, like for instance: patient clinical management, research, quality of life, social rights, etc.?
Patients experiences are different and always interesting. Accordingly, physicians can use them to perfectly understand the needs of patients.
Anonymous, Italy
Patients have a unique perspective of the difficulties, even when there are policies and guidelines which are not based patients daily experience. The identification of the key points in each country will allow to obtain a local vs global picture. This will let us to see how each key point has been addressed and where, how it is possible to address, who should be involved, and to gradually turn the negatives into positives; and to harness the discussion stakeholders with accurate information from patients.
Miriam Freire - APPDH (Associação Portuguesa de País e Doentes com Hemoglobinopatias, Portugal)
Patients definitely know better! They all are specialists of their disease, they had to face hard times and somehow managed to hold on in spite of everything. SCD affects organs, but it also affects the psyche. For many patients, the quality of life is lower than the average, lots of patients do not know about their social rights and are unfamiliar to lots of things linked to the disease. Only those who went through those difficulties can share their experience about some things and educate other patients or care givers who need explanations for example about patient clinical management.
Dianaba BA - Fédération des Malades Dreépanocytaires etThalassémiques SOS GLOBI, France