This is one of the many consequences of the coronavirus epidemic: blood donations have plummeted and While stocks are at their lowest, some patients requiring regular infusions are uncertain whether to continue treatment. This is the case for Hugo and Lucas, in Flines-lez-Raches, near Douai.
These two 6-year-old twins suffer from a rare genetic condition. Bruton’s disease is a primary immune deficiency: their body does not produce immunity and does not memorize any antibodies. Every week they therefore need an infusion of immunoglobulin, present in the plasma, to have an immunity level identical to that of children their age. The only possible treatment therefore comes from plasma donations and blood donations, but since the end of January it has become more and more difficult to find. “Week to week we are not sure we have the IV”, worries their mother, Laetitia Bleuse. “However, without this treatment, they cannot lead a normal life.”
A global shortage
Asdia Perfusion, the provider providing this home care, is facing a shortage of inventory. “Every week, we knock on the door of hospital pharmacies in the region, in order to find a solution for us patients”. explains Laetitia Bauduin, the head of the agency in Lille. “Some are also running out of immunoglobulin. And more and more are in this case. Others prefer to keep what little stock they have left for their own patients, which is understandable.”
According to the agency, this shortage is global and patients are now suffering from the drop in donations at the time of the outbreak of the coronavirus epidemic. It takes an average of six months between a donation and the administration of immunoglobin as treatment. The hematologist who follows the two children to the Jeanne de Flandre hospital in Lille confirms that the situation is becoming very tense and is spreading throughout the region.
A fall in stocks that comes at the worst time
But while Hugo and Lucas need a weekly infusion, this drop in inventory comes at the worst time. “We are in the middle of winter, with its share of viruses. Not to mention the Covid and the arrival of its variants …” underlines the mother of two children. Today, Hugo and Lucas are in great shape and going to school like any other child their age, but they can’t afford to skip a single week of treatment.
Are my children going to be out of school? Placed in a bubble?
The family fears having to change their daily life. “Every week the hospital, the provider, tells me that they can’t guarantee me anything for the next week. What if we don’t have the treatment? Are Hugo and Lucas going to be placed in a bubble? Will our two other children also be out of school in order to protect their little brothers? “, asks Laetitia Bleuse.
L’association Iris lists nearly 90 families of patients in the region. “They are all in the same situation “, deplores Lisiane Hespiel, her referent in the North. “As I speak to you, I don’t know if my child will be infused next week. What are we going to do with our children?”
The family of Hugo and Lucas remain hopeful and mobilize, as they do regularly, in favor of blood donation. She has already approached the town hall and the school of Flines-lez-Raches. “It gives us hope”, assures Laetitia. “There is a real mobilization. People send us pictures of them giving their blood and tell us: I did it for Hugo and Lucas!”
But patients need a huge mobilization: to treat one person for a month, around 120 plasma donations are needed.
–
