For patients with a rare form of cancer, it is very important that they go to a hospital that specializes in that form of cancer. But these patients have insufficient access to ‘expert care’. This is evident from the IKNL report ‘Rare cancer: Organization of expertise’. “It is not clear to patients and professionals where expertise can be found.”
In the Netherlands, 130,000 people live with or after a rare form of cancer. Four hundred new patients receive this diagnosis every week; more than 20,000 annually. There are 243 rare cancers, such as anal cancer, bile duct cancer, skin lymphoma, eye cancer, penile cancer, urethra cancer and sebaceous gland cancer. A cancer is rare if there are fewer than 1,000 diagnoses per year.
Lower five-year survival
Patients with rare cancer are diagnosed relatively late. Sometimes up to six months after the first consultation and often after one or more incorrect diagnoses. The five-year survival is also fifteen percent lower than for common cancers and patients experience a lower quality of life.
When specialized teams assess patients with rare cancers, the disease is diagnosed more quickly and often treated more effectively. That is why there are already various initiatives for ‘expert care’. In addition, the Ministry of Health, Welfare and Sport has designated Centers of Expertise for Rare Disorders (ECZA). But the report shows that initiatives are insufficiently aligned and difficult to find for patients and professionals.
Shredded
“Our main conclusion is that the organization of expert care for rare forms of cancer in the Netherlands is, in a word, confusing,” said IKNL board members Thijs Merkx and Valery Lemmens. It can and must be better. “That is in the direct interest of patients with rare cancer.”
The Patient Platform for Rare Cancers (PZK) believes that the treatment is still too fragmented: too many hospitals treat too few patients to guarantee sufficient expertise.
Link
“Care for patients with rare cancer should be provided by specialized centers. Pooling expertise is a precondition for good care. It must also be clear to patients where they can go. Patients are still wandering, unfortunately little has changed in recent years,” says Marga Schrieks of the Patient Platform.
The interest group calls on politicians and the government to take action; it is time for ‘a national approach and more central management’.
According to the Patient Platform, the outlook for patients with rare cancers has barely improved over the past ten years. There is a plea for more money and attention for ‘international cooperation and research into rare cancers’.
Read also: Former actress Tetske van Ossewaarde has rare ovarian cancer: “I thought, this is my death sentence”