In the spring, Professor Carin Uyl-de Groot became aware that the number of cancer diagnoses had dramatically declined compared with last year. Around 5,000 fewer diagnoses. And the problem not only relates to cancer, but to all forms of diagnoses.
Carin Uyl-de Groot is Professor of Health Technology Assessment, which she describes as ‘evaluation of healthcare’ for the sake of convenience. Two years ago, she published an article about the (un)fair price of medicines in the well-known magazine Nature. “What intrigues me is that we cannot actually pay for our health system and that patients do not have equal access. I therefore do a lot of research into expensive medication, its effectiveness and efficacy. I’d say that if the medicines are there and we don’t get them, something’s going wrong.”
She now observes the same unfairness in the management of healthcare during the pandemic. Despite the huge focus on health, things are going wrong. “Patients must be able to go to the doctor. If you call a medical practice now, you first get an answerphone or a long choice of options. GPs are seeing nearly half of the normal number of patients. And those missed diagnoses are mainly in that other half.” The problem according to Uyl-de Groot is not just about access to the GPs. Something must also be going wrong in the second line, partly because of the video calls that have replaced in-person appointments. “You can’t physically examine someone. The specialist must actually meet in-person with the patient. It’s a multilevel problem, but you can make changes without it costing us too much more.”
Across the board
Uyl-de Groot browses through her draft article about missed cancer diagnoses during the pandemic, which is due to be published in the Nederlands Tijdschrift voor Gezondheidswetenschappen. Several diagrams show the extent of the problem. Whether you view the distribution by age group, province or type of disease, you find underdiagnosis across the board.
Isn’t it just that fewer people are getting cancer this year? “No. Every year, the number of diagnoses rises. And you hear doctors already saying that they are seeing more patients needing palliative care because there is now no possibility of recovery.”
1500 to 1700 extra deaths
Supported by a ZonMW grant, Uyl-de Groot embarked on some calculations. Using models from the UK, she calculated that for breast and colon cancer alone, there will be around 1500-1700 extra deaths in the coming five years. “Everyone is so busy with other things, but this continues. Those models were published in the Lancet back in May with statistics about how many diagnoses they missed in the UK during the first wave. So we were obviously aware of the problem, but we all continued as we were without adapting the policy. That’s what I find so strange.”
Uyl-de Groot received responses from those around her and from fellow doctors, but not from policy makers or politicians. She therefore approached journalist Ellen de Visser. Together they ensured that a detailed article was published in the Volkskrant featuring the personal story of a patient who was diagnosed too late with lung cancer. If you present a patient like Barbara, it might become clear and personal. You then start thinking that it could happen to anyone.”
Don’t play it down
Something in the policy must change, says Uyl-de Groot. For GPs, for example, there should be a clear guideline across the country. The government should also launch a multi-media campaign to get people to check their health and not just watch out for COVID symptoms.
Furthermore, this must all be done without playing down the pandemic. “I think that the way we communicate is crucial. That is now evident with the policy regarding facemasks. In 2004, SARS showed that facemasks work if they were used properly. Yet at the start of the coronavirus pandemic, they were saying that they don’t work. You just need to tell people how to use them, then they do work.”
Ill father
Uyl-de Groot has not been spared the challenges of the coronavirus pandemic either. She cancelled a planned sabbatical this year so that she could devote extra attention to the consequences of COVID-19 for the people in her department. And while her work continues, you will also find her at Erasmus MC visiting her ill father three times a week. “It’s quite a challenge to get everything done. Fortunately, we have some room at home and our children are old enough to look after themselves.”
Despite the challenges, she continues to actively promote more fairness in healthcare. As a member of the Health Council, for example, she is one of those deciding on the new coronavirus vaccine. “Perhaps we should take this vaccine as an example for the development of new drugs. Governments are investing billions in vaccine development, yet Pfizer won’t release the patent. Companies think in very commercial terms, but this is about health, and everyone is entitled to that.”
This article was written by Ferayed Hok and published in the Erasmus Magazine on December 8, 2020.
- Professor