2022 was a disaster year for patients and pharmacists. The Pharmacy Organization KNMP reported 1514 medicine shortages in the Netherlands this year. Compared to the previous year, this is an increase of no less than 50 percent.
Other medicines
“Tim was four months old when we found out he has lissencephaly, a rare brain defect that puts his developmental age between two and four months. He also suffers from this epileptic seizures. To counter these attacks, Tim receives a daily drug in drink form. A drug that has a limited shelf life, so we cannot build up a large stock.
I always find it exciting when it’s time for a new bottle. Are we going to get something or not? The medicine has been scarce since October, so we regularly leave the pharmacy with a different brand or medicine.
This has already gone wrong. Then his seizures got worse and he also had to vomit as a side effect. Those attacks are a blow both physically and mentally. When he vomits we have to undress him, wash him and change his clothes again. That’s tough for him, because he doesn’t like being touched to his head. He can’t use all those extra stimuli at such a time.
Support
Tim turns more into himself because of this. Normally he likes it when we take him for a walk, but he doesn’t feel like it if he doesn’t feel fit. He then shuts himself off from the world and his quality of life decreases as a result.
No matter how bad a substitute is, it is always better than nothing. If Tim no medicines he lies awake a lot, cries often and has constant seizures. Occasionally he also has attacks where he stops breathing. Sometimes I worry that this might increase without the right medicines.
Some people place a call through social media to obtain medicines, but we have not done this ourselves. Our pharmacy has to make a drink from the tablets and I don’t think they do that with medicines that I received through-via.
I can imagine that the need is so great for people. Me and my husband have also been on the verge of driving to a pharmacy in Belgium for medicines. We were prepared for the fact that the journey alone takes three hours.
Impact family life
It drug shortage not only has a huge impact on Tim’s life, but also on our family life. My eleven-year-old son Luc also needs attention. My partner and I try to give him as normal a life as possible, but sometimes he is a bit more on his own.
In our spare time, we often call around and email for medicines these days. I sometimes notice that Luc finds that difficult, but he also understands that I can’t watch a movie with him when Tim cries and has one attack after another. We do what we can, but of course it’s not fun.
When you read about the medicine shortage in the newspaper you might think ‘oh, annoying’, but people often don’t know the impact. I understand that the Netherlands cannot do anything about the shortage of raw materials, but we are also facing a shortage because the Netherlands pays less for medicines compared to our neighboring countries. In Germany and Belgium they are willing to pay more. I do wonder if we shouldn’t just draw the same line if the consequences are so great.”
Yuòn Ni finds support among others at 2CU, a foundation that connects parents of children with severe intellectual and multiple disabilities (ZEVMB). “Here, for example, we often share tips for obtaining medicines. We are all in the same boat and often call dozens of pharmacies to check whether they still have medicines.”
More information about children with severe mental and multiple disabilities can be found on the website of ZEVMB. You can get in touch with ZEVMB families via 2CU.
