06 March 2023 – 01:59
Every week, 400 patients are diagnosed with a rare form of cancer. The chance that they are still alive after 5 years is on average 15% lower than with a common form. The similarity between most of the rare cancers is that the organization of care lags behind compared to the common cancers. The Patient Platform for Rare Cancers calls on politicians and the government to take concrete improvement actions. A checklist has been drawn up to help rare cancer patients on their way in their search for good care.
On Monday 6 March, at the start of the Week of Rare Cancers, the Comprehensive Cancer Center of the Netherlands (IKNL) will publish the report ‘Rare cancer: Organization of expertise’. The report provides insights into the current organization of care for people with a rare cancer. IKNL shows how healthcare is now organized. The Patient Platform for Rare Cancers (PZK) believes that treatment for many rare cancers is still too fragmented: too many hospitals treat too few patients to guarantee sufficient expertise.
Call for PZK: need to improve care for rare cancers
The organization of care has not fundamentally changed for most forms of rare cancer over the past five years. In our reflection on the IKNL report, we and the Netherlands Federation of Cancer Patient Organization (NFK) describe the need for expert care, scaling up, international cooperation and research, transparency for patients and a better procedure for designating centers of expertise. We urge field parties, politicians and the government to quickly and appropriately convert the findings in this report into concrete improvement actions.
Marga Schrieks of the Patient Platform for Rare Cancers: “It is great that IKNL also underlines the need for expertzorg. We have been fighting for this for years, because care for patients with rare cancer must 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 still wander, unfortunately little has changed in recent years. The patient is entitled to this!”
Week of Rare Cancers: What are you doing?
During the Week of Rare Cancers we highlight the disadvantaged position of people with a rare cancer and highlight what is needed to improve the organization of care for rare cancers. We are also launching a checklist for patients to make it easier for them to find their way around healthcare themselves.
The theme of the fourth edition is: What do you do to increase the chance of survival and/or quality of life for people with a rare cancer? PZK shows what is happening in the care for rare cancers and points out to patients the various options they have in their own trajectory. View the weekly program:
Monday: Current status of rare cancer care (and presentation IKNL report)
Tuesday: The importance of correct information and contact with fellow sufferers (Kanker.nl & patient organisations)
Wednesday: Quality of life in rare cancers (IKNL & IPSO)
Thursday: Early diagnosis and extensive (molecular) diagnosis (Hartwig Medical Foundation)
Friday: What do hospitals do for people with a rare cancer?
Saturday: The importance of participating in scientific research (FORCE)
Sunday: Summary of the week
What can the patient do?
Due to the small number of patients, there are fewer or even no standard treatments and care agreements in hospitals for rare cancers. Also, not all hospitals have (much) experience in treating rare cancers. That is why it is important that patients pay extra attention to ensure that they receive good care and that they collect reliable information themselves. To help them on their way, PZK has made a checklist: what should you, as a patient, think about when you are told that you have a rare cancer. For each topic, links have been added to further information and useful tips. The need for such a checklist is also apparent from the experiences of Tetske van Ossewaarde. She lives with granulosaceltumor, a rare cancer diagnosed only 15 times a year. Because of its rarity, Tetske has immersed herself in her illness: “Make sure you become your own lawyer to suggest options and think along with the doctor.”
About Rare Cancer Week
From 6 to 12 March 2023, the Week of Rare Cancers. The Patient Platform for Rare Cancers (PZK) asks, together with NFK, KWF, IKNL, kanker.nlcancer patient organizations and IPSO centers attention for people with a rare cancer.
The hard numbers on rare cancer
Every week, 400 patients are diagnosed with a rare form of cancer. The chance that they are still alive after 5 years is 15% lower than with a non-rare form. The similarity between most of these rare cancers is that the organization of care lags behind compared to the common cancers.
Source: Rare Cancers Patient Platform
Editorial Medicalfacts/ Janine Budding
I studied physiotherapy and Health Care business administration. I am also a registered independent client support worker and informal care broker. I have a lot of experience in various positions in healthcare, the social domain and the medical, pharmaceutical industry, nationally and internationally. And have broad medical knowledge of most healthcare specialties. And of the care laws from which the care is regulated and financed. Every year I attend most of the leading medical conferences in Europe and America to keep my knowledge up-to-date and to keep up with the latest developments and innovations. Currently I am doing a Masters in Applied Psychology.
My posts on this blog do not reflect the strategy, policy or direction of any employer, nor are they work by or for any client or employer.
