2023-08-03 05:06:00
The young girl from Erezée is therefore unable to enjoy a good pizza or a generous dish of pasta with her friends or family, but has to make do with small, nutritious meals.
Because of the shortage of drugs, Brigitte is not sure of being able to treat her son, who has cystic fibrosis: “Without that, he cannot eat”
The feeling of having a full stomach only occurs following a few bites and his daily life is punctuated by nausea, vomiting and most of the time results in a lack of appetite, abdominal pain or even heartburn.
Shortage of medicines: “If China stops its exports to Europe, it might be more violent than the bombs falling in Ukraine”
On the market, only one drug can relieve it: Litican in the form of tablets. Problem, it has not been found for several months in Belgium because of the unavailability of an active substance present in the treatment, according to the explanations of the firm.
An incurable chronic disease
“It’s a chronic, incurable disease and yet it’s the only medicine that can relieve my symptoms. There is no equivalent for me. If I don’t take it, I vomit as soon as I eat something solid, she says. When I don’t have it anymore, I eat liquid dishes, baby jars or soups. When you go to a pharmacy, you can’t find any, so I was told to go abroad, but it’s expensive (50 euros a box), not reimbursed and you have to travel miles. Living alone with my mom, my brother and my sister, we don’t always have the means”.
“When you go to a pharmacy, you can’t find any, so I was told to go abroad but it’s expensive (50 euros a box), not reimbursed and you have to travel miles. Living alone with my mom, my brother and my sister, we don’t always have the means”, says Hermione, who suffers from gastroparesis. ©Dr Hermione Lespagnard
Currently, he only has one wafer left at home and only word of mouth to find more boxes. Consequence: she will certainly soon have to go back to a liquid diet with all that this entails, i.e. dietary and nutritional deficiencies, significant weight loss and sometimes worse, the obligation to introduce a catheter to eat enough.
More and more drugs are in short supply: “It is the patient who pays the high price”
An unpredictable daily life
Educated at the Saint-Laurent Institute in Marche-en-Famenne, Hermione was forced to be absent on many occasions. It must be said that the disease is very impactful on a daily basis.
A legal framework to avoid drug shortages
“It’s a completely unpredictable disease. You can get up and go really well or on the contrary feel really bad following having badly digested a piece of bread. We digest badly, we only vomit, it is a very tiring chronic disease. And besides, there is also the psychological impact of not finding this medicine for me and my family. We see the platelets decrease and we tell ourselves that we will soon run out. It has already taken years to find what I had so leaving today in an uncertain phase is unbearable”.
And when you add intestinal dysmotility to the picture, you quickly understand that it is now the disease that leads its life: on the one hand, there is the care required, the multiple medical appointments and the management of symptoms that take a lot of his time. And on the other, the gaze of others and the deprivations to be managed.
“At school, it’s quite embarrassing to have to eat baby soup as it is difficult not to be able to go to a restaurant or even enjoy a meal with the family, she recalls. At home, you have to adapt all the dishes, add nutrients or provide a second dish, these are additional costs that are not negligible. We’re willing to travel miles to find the Litican, but at some point, everything will run out. To date, I can only count on donations via Facebook or acquaintances abroad because I have allergic reactions to the injectable format”.
European pediatricians warn of lack of medicines for children
A phenomenon far from isolated
In Belgium, Litican is far from being the only drug that cannot be found. Indeed, in 2022, more than 3,000 drugs experienced supply problems. With us, a platform has even been set up by the Medicines Agency (FAMHP) to check if a medicine is available: PharmaStatut.
Essential molecules are also affected by this shortage, starting with paracetamol, the painkiller marketed under the brand names Doliprane, Dafalgan or Efferalgan. A situation that has persisted since 2020 and the beginnings of the health crisis. Moreover, according to the European pharmacy dome, PGEU, a European pharmacist spends on average nearly seven hours a week managing shortages.
Drug shortage affects 1,200 patients a year
“For Litican, we can see that it is currently unavailable in the form of tablets but alternatives are possible, indicates Ann Eeckhout, the spokeswoman of the Federal Medicines Agency. It is also sometimes possible for the doctor to make a prescription to order the medicine abroad, but this is not always possible. The interruption of its marketing is due to the fact that one of the active substances is currently unavailable. On November 1, 2023, we must also receive them once more”.
If another treatment is available, via a preparation made by a pharmacist with the same active substance or by a drug with the same active substance but another route of administration, the cost may be different and the treatment is not always adapted to the patient, it is the case of Hermione who only tolerates tablets.
1691047081
#Hermione #sees #life #turned #upside #unavailability #drug #Belgium #vomit #eat
