No extra money for Long Covid research will “set patients back”

Patient organisations have said they are worried MPs will vote against a €21 million investment in clinical research into Long Covid symptoms on Thursday.

PostCovidNL and Long Covid Nederland said the additional money is needed to provide a scientific base for treatment with existing medications which can alleviate the symptoms of some 500,000 sufferers in the short term.

A number of recently opened specialised Long Covid clinics were set up to study the symptoms and to share their knowledge with family doctors so they can prescribe medication to their patients.

But PostCovid director Dieuwke de Haen said that without the extra support for clinical research into the treatment of symptoms these would remain experimental and that family doctors would shy away from them. “They would wait until the guidelines are changed and that takes research,” she told broadcaster NOS.

De Haen pointed out that scientific grounds for treatment are a requirement for health insurers. “You can discover whatever you like in the clinics but without research into the safety and effectiveness of the treatments, most patients will not benefit,” she said.

The €21 million amendment, tabled by GroenLink-PvdA MP Julian Bushoff, is supported by most of the opposition parties but health minister Fleur Agema has already said Long Covid research has enough funding and that she wants to wait until doctors and scientists come up with new insights.

According to De Haen, that means patients have to wait even longer. “We have a list of medications which are not part of any studies but may help to improve quality of life. With the €21 million we can initiate 20 studies, including 10 aimed at children,” she said.

Bushoff said that he hoped the coalition parties would have a change of heart despite a tight health budget.

“The health budget is massive and €21 million is a relatively small amount for something that can have a great impact,” he said. “Without clinical studies only a few thousand patients will be helped instead of potentially hundreds of thousands.”