The word of the President
Sadly Sickle Cell Disease has won acclaim: finally leaving anonymity. It is officially recognized as a “Public Health Priority”. An international day is devoted to it, the 19th of June. But in our country, France, the first genetic disease in Ile-de-France still got the label of “Rare Disease”.
As the President of the Association For the Information and Prevention against Sickle Cell Disease (APIPD – Association Pour l’Information et la Prévention de la Drépanocytose), I can only be delighted by these progress. However, bitterness is taking the momentum down: 32 years after its creation, the men and women devoted to the patients and their families are bound hand and foot. Their actions are hindered because of the lack of sufficient subventions.
The Association can count on thousands of members and volunteers, but not on real space to welcome, to support Sickle Cell Disease patients and their families. An Utopia, you may say?… maybe…but an utopia which is really close to reality because of the collective determination of all these people!
The Association has nothing to be ashamed about its successive results. We constantly jostle the different governments for them to be snapped out of the lethargy. They simply ignore that Sickle Cell Disease owns a universal passport because it is stateless and syncretic: with no nationality, no religion. It is a chameleon which can adapt to any environment.
Sickle Cell Disease feels comfortable everywhere! The evidence is that from 50 to 150 millions of people all over the world are concerned with it. There are more than 26 thousands of sick people in France and more than 150,000 healthy carriers; 2,000 sick people in Martinique, 1,500 in Guadeloupe and 2,000 in Guyana.
Despite all these numbers, the Government refuses to accept responsibility mostly concerning the ethnic targeting. Sickle Cell Disease remains in this specific ethnic targeting, which is not consistent with the Article 1 of the “Declaration of the Humans and Citizen Rights”. “Men are born free and remain free and equal in rights. Social distinctions can be based only on public utility”.
On behalf of the APIPD and all the patients, I brought the matter to the Defender of the Rights on November 2017 to have a systematic newborn screening extended to the France Metropolitan territory. In its answer to APIPD, the defender acknowledges the necessity of it and even considers that “continuing with newborn screening based on ethnic targeting despite our actual knowledge of the disease is questionable” and that it even has “major medical repercussions”. He also acknowledges that “newborn screening based on ethnic targeting stigmatizes a certain group of population” and mostly that it “would be less and less efficient due to the intermingling of populations in the France Metropolitan territory”.
The principle of inequity under the ethnic targeting is obviously recognized although this selective practice has not been yet reconsidered.
Moreover Sickle Cell Disease is not to be discussed in the Faculty of Medicine’s program. There is also no large scale education as for the other diseases. Only the APIPD is keeping awareness, with absolutely no finances help devoted to it from the Government, this disease still being unfairly called “black disease”.
The former Health Minister, also President of the College of the High Health Authority, already argued that Sickle Cell Disease was not profitable and that the Authority will not consider in a screening of all the newborns in France.
Despite the visible amnesia of all the decision-makers from all parties and despite the general disinterest on it, me, Jenny HIPPOCRATE FIXY, mother of a sick child, will never let my guard down and renew my commitment, body and soul, to fight against this scourge.
What is the current situation? What are we doing of all these undervalued children, who have so many difficulties from attending school normally? Experiencing school failure because of frequent absenteeism (durable hospitalizations, repeated crises, tiredness…). They are considered as lazy while in reality they are submerged by tiredness because their hemoglobin level is lower than normal. They are still considered as outcasts.
And what about the adults with Sickle Cell Disease who are physically and mentally impaired, also considered as lazy because they can not, as any other person, have access to the job they would love because of the “contraindication” of the disease?
The sole purpose of these observations is to raise concern of each of us on the inexorable advance of Sickle Celle Disease.
If we do not react quickly enough and in a very seriously way about it, all that will be left for us is to count our dead: a father, a mother, a friend, a sister, a brother…
Jenny Hippocrate Fixy