2023-05-15 08:33:30
1. First reflex: no more Q fever
It is January 2020 when Michael Rutgers, director of the Lung Fund, sees an X-ray of a Chinese corona patient, with ‘white clouds’ near the lungs. “Scar tissue. Long-term damage is going to occur here, I thought.” Alfons Olde Loohuis, medical advisor at C-support, also realizes that something is coming after reading a Canadian study into Sars-1. “Patients continued to have headaches, fears, severe complaints after their infection.”
Virologists also quickly take into account a long aftermath for a group of patients. Long covid or post-covid, as the disease has come to be called, does not come as a bolt from the blue for them. The Netherlands had also been warned, with Q fever: around 2008, that virus claimed many victims, especially in Limburg and North Brabant. Patients were deprived of care and recognition for a long time.
Never again, is the thought of the government, which responds firmly. As early as March 2020, Q-support, which has been assisting Q fever patients for years, was instructed to also care for lung covid patients under the name C-support. Health insurers quickly reimburse lung covid treatments at physiotherapists and occupational therapists. The House of Representatives passes unanimously the assignment It is up to the government to properly organize care, supervision and research.
2. Three years later: anger, frustration
That motion is exactly three years old this week. The state of affairs in May 2023? Care, guidance and research are not properly arranged. This is especially the case for people with serious complaints. 100,000 to 375,000 Dutch people – an estimate by the OMT – are now struggling with lung covid.
They suffer from fatigue, shortness of breath, a stimulus disorder, memory problems, ‘brain fog’ or a combination of these. Intensity and duration vary enormously. Some patients barely get out of bed. A generally accepted definition of lung covid is lacking, as is central registration of patients and effective treatment.
The conclusion, according to Rutgers, is that despite the warnings and good intentions, the Netherlands has made exactly the same mistakes as with Q fever. Dozens of people directly involved – OMT members, doctors, scientists, patients and politicians – explain how this could have happened.
3. Not on the political agenda
Back to October 1, 2020, the day C-support was officially launched. “We had prepared for five thousand patients over a period of four years,” says director Annemieke de Groot. “Then the system opened up, and it was tap, tap, tap, one patient after another. Really a storm. We reached the number of five thousand early in 2021, now there are 23,000. That is just the tip of the iceberg.”
No matter how harrowing the patient stories, which will increasingly appear in the media from 2021, and how alarming the numbers of patients who report to C-support and the Lung Fund (40,000 viewers immediately at the first webinar): lung covid does not seem to be through push into the political agenda.
It is never a serious theme in government communications. At press conferences, Prime Minister Mark Rutte and Minister Hugo de Jonge of Health mainly emphasize the risks for the elderly. They also rarely get questions about lung covid, which mainly affects many young, until then healthy people.
Occasionally the subject is briefly discussed, but it never becomes a dominant dossier. Minister De Jonge, Minister of Health between March 2020 and January 2022, is simply too busy with other matters, say those directly involved. The subject rarely seems to play a role in policy choices. The Dancing with Jansen episode, summer 2021, is illustrative. Young people are allowed to go to the pub almost immediately after their shot, although the vaccine does not yet offer protection at that time. It leads to a boom in infections – and therefore also to lung covid.
4. OMT: never explicitly advised
Dancing with Jason goes directly against the advice of the Outbreak Management Team (OMT). Yet it is striking that the medical-scientific advisers of the cabinet also pay little attention to lung covid. In the first year, the term does not even appear in the advice at all, it turned out earlier.
That is not for nothing, says OMT member and virologist Marion Koopmans. “Preventing lung covid was never a government policy goal, so the OMT has never explicitly advised on this. Until summer 2021, it was not an active consideration in our discussions. That was not a problem at the time. If you bet on containing the virus, you will take all the consequences. So also long covid.” OMT chairman Jaap van Dissel: “If you want to prevent post-covid, you have to aim for zero infections. That has been tried in China, but also failed.”
After the summer of 2021, the question of whether the risk of lung covid should play a role in future relaxations will be on the table, but explicit advice will never be given. Diederik Gommers, then chairman of the Dutch Association for Intensive Care: “The pressure to relax was great, post-covid was not on the radar of the population. Then it is difficult to explain that you are taking strict measures.”
Several OMT members state that the scientific basis to provide substantiated advice about lung covid was simply missing. Koopmans: “How many people got lung covid, how many of them had a really strong impact on their daily lives? We didn’t know that. To impose restrictions on the basis of such uncertain knowledge, that is quite something. And make no mistake: during such a crisis it is already difficult to look a week ahead, let alone six months.”
5. The result: information is not forthcoming
Due to the persistent lack of clarity, and because everyone is busy with other files, the subject never comes up as a top file in the Catshuis, where the important decisions are made. Information provided by the cabinet never comes out seriously. Merel Hellemons, pulmonologist at Erasmus MC in Rotterdam: “There has been very little communication. I have never seen it seriously taken into account, while in my opinion that would have been sensible.”
Patient organizations are now doing their best to put the subject back on the agenda, but they are not getting much support. At talk show tables and in the newspapers, it is about the infections of today, the IC capacity of tomorrow and the relaxations of next month. Rarely is it about the period after that, which we have now entered, according to some the ‘disaster after the disaster’.
6. Ernst Kuipers: new era?
With the easing of the corona crisis, Minister Ernst Kuipers, who will succeed De Jonge in 2022, has more time to tackle lung covid. But patients remain critical. They still do not see a minister who stands up for them. They experience the fact that Kuipers refuses to register lung covid patients as a lack of recognition. It also bothers them that Kuipers mainly looks abroad for research. Doctors share that annoyance. They have to sit on their hands, while tens of thousands of patients waste their time at home.
The minister contradicts the criticism. Kuipers reiterates that he takes lung covid ‘very seriously’, that a lot of money goes to research and that he took the initiative to share knowledge at the EU level. At the end of this month, the cabinet will present plans for a new center of expertise. “Unfortunately, research takes time, I understand the frustration of patients, who are sometimes put on the wrong track by the images in the outside world. Like: we add 5 million euros and you will have the solution tomorrow.”
According to the minister, registration is not necessary to help patients ‘recognize and acknowledge’. This does not happen in a national database for other disorders either. “We also don’t have a database for rheumatism, dementia or Parkinson’s, but we still recognize those images.” In addition, such a registration process would be extremely time-consuming. Kuipers suggests that researchers or associations could set up a registration themselves.
7. Support from an unexpected angle
This week, patients received support from an unexpected source. Jolande Sap and Jaap van Dissel spoke in the House of Representatives as chairpersons of the main corona advisory bodies. Sap argues that central registration of patients is really necessary, Van Dissel says that lung covid ‘is definitely a serious problem for these people’: “So it is very important to map it out properly. These are serious complaints.”
Parliament is also hammering on the theme. In a written round of questions, the term post-covid is used more than 140 times. Finally, more seems to be happening. Will that still be on time? Van Dissel preaches patience. “The patient who is now sick must be acknowledged, helped to make life comfortable. We don’t know well enough what the mechanisms are, research is ongoing. This is followed by definition and treatment.”
8. Epilogue
How will the Netherlands ever look back on tackling lung covid? Some experts have no doubts: this approach is in line with the benefits affair and Groningen. Rutgers: “It concerns a vulnerable group of people, with very serious suffering, who do not receive the attention they deserve.” Someone who was closely involved in the fight against corona also sees parallels. On an anonymous basis: “Everyone knew that long covid was the collateral damage of the policy, but these people have hardly been looked after.”
Others, such as crisis management professor Menno van Duin, are less adamant: “Just like in Groningen, vulnerable people have to fight hard for their rights, but I’m not going to say that the government saw this coming. It is inherent in crises that things turn out differently than you think. Moreover, other choices would have led to other damage, such as loneliness or learning delays.”
Annemieke de Groot calls on us to continue to look for a solution together. She wants to guard against (too) harsh judgments. “I really resist the idea that nothing has happened in three years. Some things are really handled better than with Q fever. It just turned out to be insufficient.”
And the patients? Pascal Grootveld, who has been confined to his home for two and a half years, just like many of her fellow sufferers, has little faith in the government anymore. “It’s great that Van Dissel is now also saying what we’ve been saying for years, but it’s painfully late. And despite the attention, there is still very little concrete. Some doctors fear that the damage to the body will be irreversible at some point. I’m afraid that will also apply to us.”
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